Competence Assessment in Dementia

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Competence Assessment in Dementia Edited by Gabriela Stoppe On behalf of the European Dementia Consensus Network

SpringerWienNewYork

Prof. Dr. med. Gabriela Stoppe Universitäre Psychiatrische Kliniken, Basel, Schweiz

This work is subject to copyright. All rights are reserved, whether the whole or part of the material is concerned, specifically those of translation, reprinting, re-use of illustrations, broadcasting, reproduction by photocopying machines or similar means, and storage in data banks. Product Liability: The publisher can give no guarantee for all the information contained in this book. This does also refer to information about drug dosage and application thereof. In every individual case the respective user must check its accuracy by consulting other pharmaceutical literature. The use of registered names, trademarks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. © 2008 Springer-Verlag/Wien Printed in Germany SpringerWienNewYork is part of Springer Science + Business Media springer.at Typesetting: Composition & Design Services, Minsk, Belarus Printing: Strauss GmbH, 69509 Mörlenbach, Germany Printed on acid-free and chlorine-free bleached paper SPIN: 11804031

With 2 Figures

Library of Congress Control Number: 2007935991

ISBN 978-3-211-72368-5 SpringerWienNewYork

PREFACE

Dementia and related disorders affect the sufferers’ ability to perform activities of daily living and to make appropriate decisions about various issues relevant to their life. While there is no disagreement about these facts there is little clarity and even less consensus about the ways in which competence to make decisions should be assessed in daily practice – nor is there agreement about the levels of competence at which it is in the best interest of the people with dementia to have a guardian and receive legal protection against abuse and other mistreatment. In daily clinical practice there is a large heterogeneity in procedures used for the assessment of competency in dementia across Europe, and we are sure that in a considerable number of patients probably is not served best with the methods applied in current practice. This highlights the need for a thorough discussion of this topic in a European perspective. The European Dementia Consensus Group (EDCON) was established by the Madariaga Foundation in Brussels to identify such areas of controversy and disagreement related to dementia and to develop consensus about them among all concerned: a further task of the group is to seek ways to promote the best possible care based on such a consensus. The group is multidisciplinary and serves as a steering mechanism used to achieve these goals. In its work it relies on a group of expert advisors in European countries and on the support of non-governmental organizations with which it has established working relations. Until now the EDCON has worked on the development of a consensus about a variety of areas of possible controversy including the disclosure of the diagnosis of dementia to patients and their carers, the

minimal standards of care for people with dementia1, the improvement of access to diagnosis and treatment2, ethical issues related to research in dementia3, the problems related to severe dementia, stigma and social exclusion of people with dementia, assessment of outcome of treatment of dementia and the assessment of competence of people with dementia. The work to develop consensus on the latter subject lead, inter alia to the production of this volume. In its work the EDCON Steering committee selects areas on which it will concentrate and designates a coordinator for the work on each of those. The coordinator then undertakes to assemble the existing evidence and works with a group of expert advisors to assess and summarize it, usually in the form of a scientific paper or a book. Professor G. Stoppe was thus invited to coordinate the work on the development of the consensus of the competence of persons with dementia. The consensus statement that the group proposed to the Steering committee after its review of the evidence and its discussions is given on page 11 and the working papers produced in the course of the work on this area are contained in this volume. 1

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Burns A on behalf of EDCON (Ed) Standards in dementia care. Taylor & Francis, London and New York 2005 Waldemar G, Phung KTT, Burns A, Georges J, Hansen FR, Iliffe S, Marking C, Olde Rikkert M, Selmes J, Stoppe G, Sartorius N (2007) Access to diagnostic evaluation and treatment for dementia in Europe. Int J Geriatr Psychiatry 22: 47–54 Olde Rikkert M, van der Vorm A, Burns A, Dekkers W, Robert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M, Waldemar G, on behalf of the European Dementia Consensus Network (EDCON): Consensus statement on genetic research in dementia (submitted)

Preface

It is my pleasant duty to thank, on behalf of EDCON, all the experts who have worked with Professor Stoppe and who had produced the papers as-

sembled in this volume. Our special thanks go to Professor Stoppe who has guided the group’s work and edited this volume. Prof. N. Sartorius, MD, PhD Chairman of the EDCON Steering Committee

Members of the EDCON Steering Committee Prof. Alistair Burns, Manchester (UK) Prof. Marcel Olde Rikkert, Nijmegen (NL) Prof. Philippe Robert, Nice (F) Prof. Norman Sartorius, Geneva (CH) (Chair) Dr. Jacques Selmès, Madrid (E) (Secretary) Prof. Gabriela Stoppe, Basel (CH) Prof. Gunhild Waldemar, Copenhagen (DK)

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CONTENTS

Introduction Why is competence assessment important? Development of the EDCON consensus statement Lienhard Maeck and Gabriela Stoppe EDCON-Consensus: Assessment of Competence Chapter 1 Neuropsychological assessment Pasquale Calabrese Chapter 2 Brain structures involved in dementia Matthias Brand and Hans J. Markowitsch Chapter 3 Medical factors interfering with competence in dementia Maria E. Soto and Bruno Vellas Chapter 4 Drugs that affect competence Conor O’Luanaigh and Brian Lawlor Chapter 5 Who decides who decides? Ethical perspectives on capacity and decision-making Deborah Bowman

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11

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Chapter 6 Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe Nicole Kerschen Chapter 7 Testamentary and financial competence issues in dementia Konstantinos N. Fountoulakis and Katerina Despos Chapter 8 Assessment of competency and advance directives Julian C. Hughes Chapter 9 Informed consent in dementia research Anco vd Vorm and Marcel GM Olde Rikkert Chapter 10 Assessment of fitness to drive, possession of professional drivers’ license, possession of firearms, and pilot’s certificate in clients with dementing conditions Kurt Johansson and Catarina Lundberg Chapter 11 Practice of Competence Assessment in Dementia: Austria Johannes Wancata and Josef Marksteiner

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Contents

Chapter 12 Practice of Competence Assessment in Dementia: Denmark 107 Dorthe Vennemose Buss and Gunhild Waldemar Chapter 13 Practice of Competence Assessment in Dementia: Finland Raimo Sulkava

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Chapter 14 Practice of Competence Assessment in Dementia: France 113 Marie Bouyssy, Emilie Legay, and Vincent Camus Chapter 15 Practice of Competence Assessment in Dementia: Germany Volker Lipp Chapter 16 Practice of Competence Assessment in Dementia: Greece Magda Tsolaki and Eleni Tsantali Chapter 17 Practice of Competence Assessment in Dementia: Ireland Mairead Bartley and Desmond O’Neill Chapter 18 Practice of Competence Assessment in Dementia: Italy Rosa Liperoti and Roberto Bernabei Chapter 19 Practice of Competence Assessment in Dementia: The Netherlands Marcel G.M. Olde Rikkert Chapter 20 Practice of Competence Assessment in Dementia: Norway Knut Engedal and Øyvind Kirkevold

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Chapter 21 Practice of Competence Assessment in Dementia: Poland Andrzej Kiejna, Joanna Rymaszewska, and Tomasz Hadrys´

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Chapter 22 Practice of Competence Assessment in Dementia: Portugal Horácio Firmino, Pedro Silva Carvalho, and Joaquim Cerejeira

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Chapter 23 Practice of Competence Assessment in Dementia: Romania Nicoleta Ta˘taru Chapter 24 Practice of Competence Assessment in Dementia: Spain Fernando Marquez and Raimundo Mateos Chapter 25 Practice of Competence Assessment in Dementia: Sweden Karin Sparring Björkstén Chapter 26 Practice of Competence Assessment in Dementia: Switzerland Marc Graf and Eva Krebs-Roubicek Chapter 27 Practice of Competence Assessment in Dementia: Czech Republic Iva Holmerová, Martina Rokosová, Božena Jurašková, Hana Vanˇková, Hana Cˇvancˇarová, Pavla Karmelitová, and Eva Provazníková

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131 Chapter 28 Practice of Competence Assessment in Dementia: UK Sarmishtha Bhattacharyya and Alistair Burns

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137 List of Contributors

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Introduction

WHY IS COMPETENCE ASSESSMENT IMPORTANT? DEVELOPMENT OF THE EDCON CONSENSUS STATEMENT Lienhard Maeck and Gabriela Stoppe

1 Preface The following chapter serves to underline the importance of developing consensus on the competence of the elderly, especially the demented population. Briefly said, the percentage of the elderly in the population is increasing in modern societies due to the increased life expectancy and reduced birth rates. In consequence an age-associated disease as dementia is going to double its prevalence within the next 20 years. Family and household structures change with more single households, more relationships on distance and shorter lifespan-partnerships. Individual rights and autonomy are increasingly and generally acknowledged as having high priority, maybe also because there seems to be more tolerance to and higher variety of attitudes and beliefs. Last but not least, medical progress has allowed to analyse mental processes with a variety of methods and thus opened opportunities for adequate multi-modal assessments and understanding.

2 Increasing numbers of elderly In the year 2006, Europe’s demographic development is characterized by one of the lowest birth rates worldwide and a continuous increase in life expectancy. In 1995, on an average, a European old age pensioner faced about four labour forces. According to a United Nations’ (UN) prognosis, this ratio will change to 1:2 by the year 2050 [UN 2004]. In the predominantly east European countries which joined the European Union (EU) in the year 2004, the result of this paneuro-

pean tendency is particularly obvious: according to a study initiated by the German “Institut der deutschen Wirtschaft” (IW) in 2004, mainly due to a low birth rate, the Estonian population will decrease about 57% by the year 2050, the Hungarian and Czechian about 25%, and Polish still roughly 15% (IW 2004). Because of this transnational demographic change the percentage as well as the absolute number of 60 years old and older Europeans will raise from today’s 21% (151.8 million) to 34% (225.3 million) in the coming 44 years. As life expectancy of citizens 60 years of age in the same time period will also increase from 18 to 22 years (UN 2004), typically age-associated diseases like dementia will become a more and more important social as well as economic factor.

3 The impact of dementia and its diagnosis and treatment Worldwide, prevalence rates of dementia are supposed to double every 20 years to 81.1 million by 2040. As for the situation in Europe, likewise, the number of about 5.3 million demented people in the year 2000 is supposed to clearly surmount 10 million within the next four decades (Ferri et al., 2005). Though treatment options still remain limited and future need for care is generally not to avoid, with the introduction of cholinesterase inhibitors (ChEIs) in the mid-90s, progression of Alzheimer’s disease (DAT) as the most prevalent primary neurodegenerative dementia can be slowed down (Burns et al., 2006). In addition nonpharmacological treatment options as well as caregiver support models have been developed and evaluated

Introduction: L. Maeck and G. Stoppe

(Sitzer et al., 2006; Spector et al., 2003; Quayhagen et al., 2000). Moreover, vascular dementia (VD), the nextcommon cause of dementia, has become a promising target for primary and secondary prevention (Wolf and Gertz, 2004; Hebert et al., 2000). Overall more elderly persons as well as better treatment options will lead to an increasing number of mildly to moderately affected demented patients who, among others, will have to make decisions on important issues.

In addition families have become smaller and many elderly people live distant from their grown-up children (Lang, 2001). Family care, still the most frequent form of ambulatory support for the demented, will become less granted in the future. This challenges societal structures and forms of intra- and intergenerational help are under discussion.

5 Legal frameworks 4 Changing family structures This becomes even more important as family structures are heavily changing throughout Europe. While some decades ago a human being used to have one spouse and one occupation throughout his or her life, modern lifes seem to be less continuous and require more flexibility and “life long learning”. Technological achievements provide more mobility and security on the one hand. On the other hand, however, their use is often complicated and requires much effort for the users to be up to date. A common example might be the technology of mobile phones. The use of the internet has only recently become a matter of interest of the elderly population, too. Elderly persons in general are more “conservative” and the neuropsychology of aging is characterized by a loss of “fluid” components like processing speed, attention and learning and a stability of knowledge and experience (Craik and Bialystok, 2006). However, also the regulation of affects and emotion is changing. Positive affects are more prevalent than negative ones and quality of life is usually higher in older compared to younger age groups (Pinquart and Sorensen, 2001; Staudinger et al., 2003; Diehl et al., 1996). Since life experience and the psychological status as well as cognitive functioning are important for decision making in general, there is no reason to assume an impaired functioning of the elderly person in general. However, dementia and other mental disorders like, e.g. depression threat the self-determination of the individuum. This becomes more important in a society which changes more rapidly than before.

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Another political trend is the tribute to and appreciation of individual rights, especially patient rights. This applies to the former paternalistic medical system, and at the moment, all societies discuss more or less intensively, e.g. matters of advance directives or living wills and the problem of informed consent. After the Council of Europe had agreed on a Convention for the protection of human rights and fundamental freedoms in November 1950, it defined principles and legal standards in the “Convention on human rights and biomedicine” during the 1990’s (see Chap. 9). This Convention is the first legally binding international text designed to preserve the human being against the misuse of biological and medical advances. As important as legal structures are, much importance must also be given to the interaction between the (demented) patient and the community, and the physicians and lawyers especially. The information and counseling of a patient is not only influenced by knowledge, but also by communication skills, attitudes and moral respect for the patient. And on the patient’s side, trust in the physician as well as awareness of the disease, play a major role. And dementia itself might influence the decisions, too. In a small study in fifty outpatients incapable of completing advance directives, these were significantly more likely to opt for life-sustaining intervention than cognitively intact controls (Fazel et al., 2000) Studies could show, that many physicians exhibit negative attitudes (ageism) against their elderly patients (Flick et al., 2005; Uncapher and Arean, 2000). Especially with regard to the management of the demented patients nihilism can often be found to affect

Why is competence assessment important? Development of the EDCON consensus statement

detection rates and management. Thus, early diagnosis of dementia is far from being reached in primary care (Turner et al., 2004; Van Hout et al., 2000; Cody et al., 2002; Waldemar et al., 2007; Stoppe et al., 2007). Applying various methods, studies revealed detection rates of 12–33% in mild and of 34–73% in more advanced dementia (summarised in Stoppe et al., 2007). Also, being sceptical on the impact on outcome, many hesitate to get into a diagnostic work-up. This attitude is often shared by patients, caregivers and the public (Gely-Nargeot et al., 2003; Connell et al., 2004; Waldorff et al., 2003; Iliffe et al., 2003). Early diagnosis however is a prerequisite to allow an individuum to decide what is necessary facing the usually progressive course of dementia.

6 The problem of competence in general But, what means assessment of competence? In literature, there is some consensus to regard competence or competency in a juridical sense by addressing to a persons’ legal qualification to perform an act; the frequently synonymously used term capacity, however, rather describes a medical status as judged by a health care professional. We have agreed to use the term competence in the broadest sense including capacity, performance, ability and competency. Differentiating capable from incapable subjects remains an issue at stake for both, physicians and legal experts. To adequately cope with that challenge, an evidence-based assessment of competence will be of growing importance. However, throughout the literature, measurement of decision-making abilities and decisional competence is highly heterogeneous (Kim et al., 2002). The international medicolegal literature usually refers to an operational model of competence defined by Applebaum and Grisso (1988). According to this, competence is defined as the ability to understand, appreciate, reason and to express a choice. Competence might be judged categorically or dimensionally. The categorical approach has to be rejected in case of dementing conditions. Not only that if diagnosis of dementia would implicate the withdraw-

al of the driving licence this would lead to avoiding diagnosis in many people. Moreover, dementia does not imply incompetence for all purposes per se. The functional approach however, is time-consuming and in theory, everyone should have a capacity-assessment each time they make a decision. In addition, legal standards for competence vary between jurisdictions and even prominent commission reports and scholars vary in their descriptions of constructs. Last but not least, there is uncertainty about the threshold between competent/incompetent. The latter applies especially to psychometric testing. That might be one reason that still experts’ categorical judgements are widely used as gold standards. Empirical studies revealed however mostly low inter-expert agreements with kappa values between 0.6 and 0.8 at best (Etchells et al., 1999; Molloy et al., 1996). As to be expected, interrater agreement can be trained and considerably increased (Marson et al., 1997; 2000). Apart from the following chapters of this book, which serve to give deeper insight into the methodological aspects of competence assessment for various purposes and to the situation in many European countries, the following paragraphs serve to underline the need for operational criteria to determine competence. This will be done with focus on typical core issues which depend on a “qualified” decision from or with respect to a demented person.

7 Focus on testamentary competence The elderly generation is in possession of considerable material assets and cash value determining legacies of corresponding height. In Germany, assets worth about 1.17 billion € have been left during 1990 and 2000; a total of 2.25 billion € will have been transmitted during the following decade (BBE 1999). As testamentary disposals are of immense microand macroeconomic as well of familiar importance, cognitive requirements with respect to the testator deserve attention. Involving higher frontal/executive cerebral functions the term testamentary capacity refers to a persons’ ability to execute a valid will.

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In Europe, competency to contract and make a will are typically regulated in national specific civil codes. There is a general conformance that, first of all, testamentary capacity implies consciousness of making a will, i.e., a basic understanding of a wills’ nature. It is proposed, that it should also assume a knowledge about the extent of property to be left, about the legal heirs, and about how the property should be divided (Shulman et al., 2005; Regan et al., 1997). Is it also necessary to know about the exact value of the assets to be distributed (Arie, 1996)? Psychometric approaches seem suitable to adequately assess complex competencies like testamentary capacity. It has been shown, that declines in semantic knowledge, short-term verbal recall, and simple reasoning ability predict physicians’ judgments on the three most difficult and clinically most relevant legal states (appreciating consequences and providing rational reasons of a treatment choice, understanding the treatment situation and choices) (Earnst et al., 2000); however, it is unclear, whether these capacities are of significant relevance regarding the claimed direct impact on a given will (Vollmann et al., 2004).

8 Focus on informed consent Except in the case of an emergency, in Europe, physicians are generally obliged to obtain an informed consent (patients’ agreement) to any intervention like institutionalisation, diagnostics, treatment, and participation in research. It generally is required to tell the patient anything that would substantially affect his or her decision. Typically, such information includes the nature and purpose, its risks, consequences, and any alternatives, if existing. The information has to be given in a way which is adapted to the abilities of patient. For the acting of the doctor it is decisive what is in the patients’ best interest (Arie, 1996). Usually, three basic components of informed consent are defined: being informed, voluntary, and competent. It is of questionable relevance whether and how long a person might recall the information

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given. Even in non-demented adults studies show that a considerable number of patients does not recall the information even hours later (Rosique et al., 2006). In case a patient cannot give informed consent, mostly a court or judge is legitimated to install a guardianship. Competencies of a guard are usually regulated in the individual national Civil Codes. They may be limited to special areas of interest, i.e., finances, residence, or consent to diagnostic and treatment. In some countries, families may decide for their incapacitated relatives without formal legitimisation by a judge or court. Which model is best for the demented people? A special problem is the informed consent for research purposes. The Declaration of Helsinki for research ethics is applied in almost all countries. Research on persons under legal guardianship implies informed consent of the legal representative in accordance with national law. There are debates as to whether and under which conditions research in demented patients might be done, even when no direct profit for the patient might arise. An example might be to take cerebrospinal fluid on multiple occasions just to analyse the change of biochemical parameters in relation to specific symptoms of dementia. From the results of this research future treatments might arise. This would mean that not this individual patient, however the group of the demented patients might have some benefit. This so-called group-specific benefit as reason for applying research to incapacitated persons has to be discussed. This is a frequent problem in research. According to a study from Italy up to 70% of patients with mild and moderate dementia of Alzheimer’s disease eligible for taking part in a drug trial, were incompetent (Pucci et al., 2001). Authors argue, that patients with DAT not necessarily have to be declared as being incapacitated making a decision whether or not to take part in a clinical study (Karlawish et al., 2002). However, today it depends on the individual researcher and his ethical standards to judge whether a patient is able to consent to a scientific study or not. It is therefore not surprising that a recent transeuropean


survey on the practice of obtaining approval from medical research committees regarding the ICTUS study determined a very heterogeneous assessment of informed consent. It also showed great differences in study evaluation by the corresponding ethical committees demonstrating need for future harmonization (Olde Rikkert et al., 2005). Since research is needed to develop treatments and service delivery, the important protection of patients’ individual rights should not lead to exclusion of demented patients and their caregivers from research per se. But how can we find a solution that balances the interests in the patients best interest?

9 Focus on advance directive Advance directives, also called living wills, anticipate situations when a person becomes incapable to decide on its own. Exclusively within the framework of existing legislation, they comprise distinct instructions about any desired prospective treatment and care. The person concerned should have a basic understanding of a living will’s nature. This should include the realisation of a fundamental problem that, due to the impossibility of accurately predicting future illness, a precise knowledge of coming situations in which the living will might apply, is impossible. Moreover, the concerned person should be free from any abnormal state of mind, which might have a direct impact on the understanding of a living will and its potential consequences. This means that ideally, the person who defines his or her advance directive, is at that moment free of any mental disorder which might affect the directive. It has been shown, that, e.g. depression changes the preferences for life sustaining therapies (Blank et al., 2001). Taking into account the high prevalence of depression in the elderly and the underdetection of the disease there should be a considerable number of persons who express a living will of at least questionable validity (Charney et al., 2003). In addition the attitudes of the family and the society might play a role. In the elderly an altruistic motivation of decisions has been described (Lang, 2000).

Other relevant questions to be answered are those, whether the living will must exist in written form, whether there should be a register (central, national…) and whether the directive should fade out if it is not renewed in time course. It is commonly suggested that directives with regard to future treatment should be reported to the patient’s health care provider, relatives and other close persons. Generally it has to be considered, that any advance directive in a situation the patient has not predicted is unlikely to remain in force when acting against the presumed interest. Especially in demented people, this might be of importance in a positive sense, as this disease could be a less fatal experience both for the patient and their caregivers than generally assumed in public opinion.

10 Focus on driving competence In later life, with respect to the maintenance of mental and physical health, social contacts and quality of life, driving capacity may become a critical factor (Marottoli et al., 1997). However, perhaps as a result of the rapidly increasing number of older drivers in the developed world, many European countries introduced obligatory health checks in the elderly. This might be surprising, as, on the one hand, old-aged drivers play a subordinated role in causing road accidents; rather, in modern traffic, they are at increased risk of being the victim in the traffic, also as pedestrians, bicyclists or train users (Cerelli, 1989). Since many of the elderly reduce driving voluntarily, it is also debatable whether the investments in screening justify the earning of a reduced accident rate, if it occurs at all. As Johannson and Lundberg point out in the respective chapter, many aspects should be taken into account: neuropsychological functions like attentional functions and visual processing, visual acuity, insight into disease and the presence of somatic disorders and drug treatment. While many regulations exist with regard to health checks of the elderly in Europe, there is not much empirical research supporting this. And security aspects

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also apply to pilots licenses for planes and boats. Do countries with regulations for driving checks in the elderly also check for the use and the possession of firearms? This is especially true for a country like Switzerland where many military weapons are in private households. While there are no obligatory checks with regard to this, those exist for driving licence. Nevertheless, European Council Directive 91/439/ EEC constitutes the rationale for national criteria regarding medical fitness, which are supposed to be required for driving (White and O’Neill, 2000). This directive is not age-related and primarily focused on somatic diseases. Moreover, with regard to the process of driving skills’ assessment in the European elderly, a significant transnational heterogeneity can be

assumed. This affects the content of health checks which may consist of a “general”, in particular cases poorly operationalized, check-ups or self-reporting questionnaires as well as neurological and psychiatric examinations. Would it make sense to foresee a regular screening for signs of dementia? Is there a consensus regarding age at entry, and following time intervals for health check-ups? And how heterogeneous are the regulations applied with regard to the obligation of reporting any illness to the authorities, when potentially affecting driving skills?

Table 1. Questionnaire used for the e-mail survey (for details see text) • Testamentary capacity – Is there an obligatory assessment of mental competence when making a testament? – Who assesses testamentary capacity? Is the individual professional trained for dementia? – How is testamentary capacity documented? • Informed consent – Is an informed consent obligatory for Institutionalisation/Diagnosis and treatment/Participation in research – How is informed consent managed in people with dementia? – How is decided, whether a formal attorney (guardianship) is necessary? – Does the procedure differ with regard to informed consent for (please specify) Institutionalisation/Diagnosis and treatment/Participation in research – Is it possible to arrange formal guardianship only for certain areas of competence (e.g., finances, treatment…)? – Can a spouse or child decide for the patient without a formal assignation as guardian concerning the following areas? If yes, please specify: Institutionalisation/Diagnosis and treatment/Participation in research • Advance directives – Are advance directives used? – How and where are they documented? – How long are they valid (is, e.g., renewal necessary?) • Driving licence – Is there a regular health check required for the elderly to keep their driving licence? If yes,… – What does it include (obligation)? – Are there formal requirements available? – At what age do mandatory checks begin and at what intervals are they carried out? – Who performs these health examinations and checks? – Are physicians obliged to inform authorities about the presence of conditions interfering with driving? • Have any formal steps been taken to include questionnaires or other screening tools for dementia in any of the following competency assessments? – Testamentary capacity – Informed consent – Advance directives – Driving licence

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11 The situation in Europe For the situation in Europe, national legal systems demonstrate relevant differences, considering for example the role of the individual and the family. This was the reason for the EDCON group to get a first impression on the situation by performing a survey. Dementia and legal experts from seventeen European countries agreed to fill out a questionnaire, which was sent to them via e-mail (Denmark, Norway, Finland, Germany, Netherlands, Belgium, Great Britain, Ireland, Switzerland, Austria, France, Spain, Italy, Portugal, Tschechia, Poland, Romania). The results were discussed in an expert group at a conference in Basel. This group consisted of two legal experts, one forensic psychiatrist, two old age psychiatrists and one neuropsychologist. The survey and the conference took place in 2004. The results and a review of the literature served as basis for the EDCON consensus. The questionnaire is given in Table 1. Overall the following chapters will show, that competence cannot be easily defined, but clearly is a multidimensional construct with important clinical, legal, ethical, social, and policy aspects. Clarity in competence assessment is founded on strong conceptual foundations, on empirically grounded assessment instruments and clinical practices, on appreciation of the clinical and legal contexts in which the assessments take place, and on ongoing study and critique of these assessments and practices. Competence assessment is an interdisciplinary endeavor that calls for creative collaborative, and cross-disciplinary approaches (Marsden and Moye, 2007).

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Burns A, O’Brien J, on behalf of the BAP Dementia Consensus Group (2006) Clinical practice with anti-dementia drugs: a consensus statement from British Association for Psychopharmacology. J Psychopharmacol 20: 732–55 Charney DS, Reynolds CF, Lewis L, Lebowitz BD, Sunderland T, Alexopoulos GS, Blazer DG, Katz IR, Meyer BS, Arean PA, Borson S, Brown C, Bruce ML, Callahan CM, Charlson ME, Conwell Y, Cuthbert BN, Devanand DP, Gibson MJ, Gottlieb GL, Krishnan KR, Laden SK, Lyketsos CG, Mulsant BH, Niederehe G, Olin JT, Oslin DW, Peason J, Persky T, Pollock BG, Raetzman S, Reynolds M, Salzman C, Schulz R, Schwenk TL, Scolnick E, Unützer J, Weissman J, Young RC (2003) Depression and Bipolar Support Alliance Consensus Statement on the unmet needs in diagnosis and treatment of mood disorders in late life. Arch Gen Psychiatry 60: 664– 72 Cerelli E (1989) Older drivers: The age factor in traffic safety. DOTHS 807 402, NHTSA Technical Report (February) Cody M, Beck C, Shue VM, Pope S (2002) Reported practices of primary care physicians in the diagnosis and management of dementia. Aging Mental Health 6: 72–76 Connell CM, Boise L, Stuckey JC, Holmes SB, Hudson ML (2004) Attitudes towards the diagnosis of disclosure of dementia among family caregivers and primary care physicians. Gerontologist 44: 500–07 Craik FI, Bialystok E (2006) Cognition through the lifespan: mechanisms of change. Trends Cogn Sci 10: 131–38 Diehl M, Coyle N, Labouvie-Vief G (1996) Age and sex differences in strategies of coping and defense across the lifespan. Psychol Aging 11: 127–39 Earnst KS, Marson DC, Harrell LE (2000) Cognitive models of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 48: 919–27 Etchells E, Darzins P, Silberfeld M, Singer PA, McKenny J, Naglie G, Katz M, Guyatt GH, Molloy DW, Strang D (1999) Assessment of patient capacity to consent to treatment. J Gen Intern Med 14: 27–34 Fazel S, Hope T, Jacoby R (2000) Effect of cognitive impairment and premorbid intelligence on treatment preferences for life-sustaining medical therapy. Am J Psychiatry 157: 1009–11 Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, Hall K, Hasegawa K, Hendrie H, Huang Y, Jorm A, Mathers C, Menezes C, Rimmer E, Scazufca M (2005) Alzheimers’ Disease International. Global prevalence of dementia: a Delphi consensus study. Lancet 366: 2112–17 Flick U, Walter U, Fischer C, Neuber A, Schwartz FW (2004) Gesundheit als Leitidee? – Gesundheitsvorstellungen von Ärzten und Pflegekräften. Huber, Bern

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Gely-Nargeot MC, Derouesne C, Selmes J, Groupe OPDAL (2003) European survey on current practice and disclosure of the diagnosis of Alzheimer’s disease. A study based on caregiver’s report. Psychol Neuropsychiatr Vieil 1: 45–55 Hebert R, Lindsay J, Verreault R, Rockwood K, Hill G, Dubois MF (2000) Vascular dementia: incidence and risk factors in the Canadian study of health and aging. Stroke 31: 1487–93 Iliffe S, Manthorpe J, Eden A (2003) Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study. Fam Pract 20: 376–81 Institut der deutschen Wirtschaft Köln (Hrsg) (2004) Perspektive 2050. Ökonomik des demographischen Wandels. Institut der deutschen Wirtschaft, Köln Karlawish JHT, Casarett DJ, James BD (2002) Alzheimer’s disease patients’ and caregivers’ capacity, competency and reasons to enrol in early-phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 50: 2019–24 Kim SYH, Karlawish JHT, Caine ED (2002) Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry 10: 151–65 Lang FR (2001) Regulation of social relationships in later adulthood. J Gerontol B Psychol Sci Soc Sci 56: 321–26 Marottoli R A, Mendes de Leon CF, Glass TA, Williams CS, Cooney LM Jr, Berkman LF, Tinetti ME (1997) Driving cessation and increased depressive symptoms: Prospective evidence from the New Haven EPESE. J Am Geriatr Soc 45: 202–06 Marson DC, Earnst KS, Jamil F, Bartolucci A, Harrell LE (2000) Consistency of physicians’ legal standard and personal judgements of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 48: 911–18 Marson DC, McInturiff B, Hawkins L, Bartolucci A, Harrell LE (1997) Consistency of physicians judgements of capacity to consent in mild Alzheimer’s disease. J Am Geriatr Soc 45: 453–57 Marson DC, Moye J (2007) Empirical studies of capacity in older adults: Finding clarity amidst complexity. J Gerontol Psychol Sci 62B: P18–P19 Molloy DW, Silberfeld M, Darzins P, Guyatt GH, Singer PA, Rush B, Bedard M, Strang D (1996) Measuring capacity to complete an advanced directive. J Am Geriatr Soc 44: 660–64 Olde Rikkert MGM, Lauque S, Frölich L, Vellas B, Dekkers W (2005) The practice of obtaining approval from medical research ethics commitees: a comparison within 12 European countries for a descriptive study on acetylcholinesterase inhibitors in Alzheimer’s dementia. Euro J Neurol 12: 212–17 Pinquart Mm, Sorensen S (2001) Gender differences in selfconcept and psychological well-being in old age: A metaanalysis. J Gerontol B Psychol Sci 56: P195–P213

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Pucci E, Belardinelli N, Borsetti G, Rodriguez D, Signorino M (2001) Information and competency for consent to pharmacologic clinical trials in Alzheimer’s disease: an empirical analysis in patients and family caregivers. Alzheimer Dis Assoc Disord 15: 146–54 Quayhagen MP, Quayhagen M, Corbeil RR, Hendrix RC, Jackson JE, Snyder L, Bower D (2000) Coping with dementia: evaluation of four nonpharmacological interventions. Int Psychogeriatr 12: 249–65 Regan WM, Gordon SM (1997) Assessing testamentary capacity in elderly people. South Med J 90: 13–15 Rosique I, Perez-Carceles MD, Romero-Martin M, Osuna E, Luna A (2006) The use and usefulness of information for patients undergoing anaesthesia. Med Law 25: 715–27 Shulman KI, Cohen CA, Hull I (2005) Psychiatric issues in retrospective challenges of testamentary capacity. Int J Geriatr Psychiatry 20: 63–69 Sitzer DI, Twamley EW, Jeste DV (2006) Cognitive training in Alzheimer›s disease: a meta-analysis of the literature. Acta Psychiatr Scand 114: 75–90 Spector A, Thorgrimsen L, Woods B, Royan L, Davies S, Butterworth M, Orrell M (2003) Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: randomised controlled trial. Br J Psychiatry 183: 248–54 Staudinger UM, Bluck S, Herzberg PY (2003) Looking back and looking ahead: adult age differences in consistency of diachronous ratings of subjective well-being. Psychol Aging 18: 13–24 Stoppe G, Haak S, Knoblauch A, Maeck L (2007) Diagnosis of dementia in primary care: a representative survey of family physicians and neuropsychiatrists in Germany. Dement Geriatr Cogn Disord 23: 207–14 Turner S, Iliffe S, Downs M, Wilcock J, Bryans M, Levin E, Keady J, O’Carroll R (2004) General practitioners’ knowledge, confidence and attitudes in diagnosis and management of dementia. Age Ageing 33: 461–67 Uncapher H, Arean PA (2000) Physicians are less willing to treat suicidal ideation in older patients. J Am Geriatr Soc 48: 188–92 United Nations: World Population Prospects, the 2004 Revision. United Nations, New York 2004 Van Hout H, Vernooij-Dassen M, Bakker K, Blom M, Grol R (2000) General practitioners on dementia: Tasks, practices, and obstacles. Patient Educ Couns 39: 219–25 Vollmann J, Kuhl KP, Tilmann A, Hartung HD, Helmchen H (2004) Mental competence and neuropsychologic impairments in demented patients. Nervenarzt 75: 29–35 Waldemar G, Phung KTT, Burns A, Georges J, Hansen FR, Iliffe S, Marking C, Olde Rikkert M, Selmes J, Stoppe G, Sartorius


N (2007) Access to diagnostic evaluation and treatment for dementia in Europe. Int J Geriatr Psychiatry 22: 47–54 Waldorff FB, Almind G, Makela M, Moller S, Waldemar G (2003) Implementation of a clinical dementia guideline. A controlled effect of a multifaceted strategy. Scand J Prim Health Care 21: 142–47

White S, O’Neill D (2000) Health and relicensing policies for older drivers in the European Union. Gerontology 46: 146– 52 Wolf H, Gertz HJ (2004) Vaskuläre Demenzen – Diagnostik, Prävention und Therapie. Psychiat Prax 31: 330–38

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EDCON-CONSENSUS: ASSESSMENT OF COMPETENCE

Being aware that there are many other terms available like capacity or competence, Defining the term “competence” in the legal as well as the clinical meaning of having the ability to understand, appreciate, reason and decide on specific, important issues of one’s daily life, Aware of the increasing emphasis on the assessment of competence of elderly persons possibly affected by dementia, Cognizant of the fact that the assessment of competence can have significant consequences for the human rights and care of persons affected by dementia, Informed about the differences that exist between legal provisions and requirements as well as between competence assessment procedures in different countries of Europe, Concerned by the fact that the current differences in the manner of assessment of competence as well as of disclosure of diagnosis may expose the elderly person with dementia and society to harmful consequences of an inappropriate assessment of competence, Aware also of the fact that the evidence about the validity of different methods for the assessment of competence is scarce and that the existing methods have to be used with great care to avoid erroneous judgments,

Recognizing that competence may vary over time and in different situations and that the lack of competence for a particular purpose does not imply that the person is lacking competence to perform adequately with respect to other purposes, EDCON recommends that the following consensus statement should be adopted as the basis for the assessment of competence in European countries: (1) The assessment of competence should be used to enhance the welfare of people with dementia and should serve to provide help and shelter to those whose competence is reduced and autonomy to those where competence is maintained. (2) The diagnosis of dementia should not be taken to automatically imply a lack of competence. (3) Competence should be assessed with respect to specific purposes. It should not be assumed that the lack of competence to perform with regard to a particular purpose means that there is a lack of competence to perform with regards to other purposes. (4) Competence should be assessed repeatedly at intervals defined by the purpose of the assessment. (5) The assessment of competence requires special skills and should be performed by persons who can use currently available methods in an optimal manner.


Chapter 1

NEUROPSYCHOLOGICAL ASSESSMENT Pasquale Calabrese

1 Introduction The understanding of aging processes is becoming increasingly relevant since the average age and longevity of the population is increasing. Normal aging is associated with some changes in intellectual functioning. While the so-called cristallized intellectual abilities (e.g., vocabulary, reasoning) are relatively preserved, there is a significant decline in cognitive functions belonging to the “fluid” domains (e.g., perceptual speed, memory load). Nevertheless, effects of plasticity can also be observed in aging. The latter is subserved by environmental stimulation. Along with the aging process there is an increase in prevalence of the dementia syndromes. In many patients dementia is preannounced by some partial intellectual decline, mostly in the memory domain. This syndrome is described as mild cognitive impairment (MCI) and represents in some cases a prodromal phase of dementia, since a high proportion of MCI patients convert to dementia within a year. Unfortunately, most clinicians do not screen for cognitive problems in their practice unless they receive complaints from either the patients or their relatives. Alzheimer’s disease is one of the most prevailing forms of dementia in advanced age. The clinical diagnosis is based on physical examination, laboratory analysis, brain-imaging and mental examination. The mental status is assessed by neuropsychological tests. Assessment of dementia and age-related cognitive decline in clinical practice is a core activity of the specialty of clinical neuropsychology. The practical implication of psychometric testing, with respect to competency, is demonstrated by describing some domain-specific dysfunctions and then presenting

clinical assessment procedures. Neuropsychological tests in patients with clinically diagnosed dementia of various etiology have shown quite variable mental deterioration. While in some forms of dementia there are some cognitive domains, which seem to decline very early in the course of the disease, some other abilities are more robust to neurodegeneration.

2 The role of neuropsychological assessment in clinical practice Together with psychiatrists and/or neurologists, neuropsychologists play an important role in the detection and evaluation of the changes in cognitive functioning that frequently occur in the later decades of life. Clinical neuropsychologists are uniquely equipped by training, expertise, and the use of specialized neuropsychological tests to assess changes in memory and cognitive functioning and to distinguish normal changes from early signs of pathology. Although strenuous efforts are being exerted to identify the physiological causes of dementia, there are still no conclusive biological markers short of autopsy for the most common forms of dementia, including Alzheimer’s disease. Neuropsychological evaluation and cognitive testing remain the most effective differential diagnostic methods in discriminating pathophysiological dementia from age-related cognitive decline, cognitive difficulties that are depression-related, and other related disorders.

Chapter 1: P. Calabrese

3 The concept of dementia Though many contributions from histopathology to neurochemistry and neurogenetics of Alzheimer’s disease (AD) are progressively contributing to a deeper understanding of its underlying causes and specificities it should nevertheless be kept in mind that the clinical impression which leads to the classification of a patient of either suffering from dementia or from another psychiatric condition is based on cognitive-behavioral features which themselves are highly influenced by psychological and also ecological variables. In this context ecological aspects include those environmental factors which an individual is confronted daily with, and which have to be managed successfully to live independently in a society which is getting more and more complex. Aspects of socio-ecological functioning have been recognized as capital components in the definition of wellbeing, health and disease by the World Health Organization (WHO). They now are inherent criteria in defining dementia and have been formalized and adopted by several classification systems (e.g. ICD), by the American Psychiatric Association in the DSM IV and by a joint committee of the National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) and also by the Alzheimer’s Disease and Related Disorders Association (ADRDA) (McKhann et al., 1984). Alzheimer’s disease (AD) is the major cause for dementia in later life (Evans et al., 1989). The most widely accepted diagnostic criteria for probable AD are those offered by the National Institute of Neurological and Communicative Disorders and Stroke and by the Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA; McKhann et al., 1984). These criteria include the presence of dementia established by clinical examination and confirmed by neuropsychological testing. The dementia is described as involving multiple, progressive cognitive deficits in older persons in the absence of disturbances of consciousness, of psychoactive substances, or any other medical, neurological, or psychiatric conditions that might in and of themselves

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account for these progressive deficits. The Diagnostic and Statistical Manual of Mental Disorders, 4th edition, of the American Psychiatric Association (1994) also outlines diagnostic criteria for dementia of the Alzheimer’s type that are generally consistent with the NINCDS-ADRDA criteria. DSM-IV also provides diagnostic criteria for vascular dementia, as well as dementia due to other general medical conditions including HIV disease, head trauma, Parkinson’s disease, Huntington’s disease, Pick’s disease, CreutzfeldtJakob disease, and other general medical conditions and etiologies. New causes and varieties of dementia continue to be elucidated (e.g., dementia with Lewy bodies; McKeith et al., 1996) and diagnostic criteria for the dementing disorders continue to be refined (e.g., International Classification of Diseases-10 and subsequent revisions).

4 The concept of Mild Cognitive Impairment (MCI) Some older individuals have memory problems as well as difficulties in other cognitive domains. These deficits may be identified by neuropsychological testing and they may be greater than those typical of normal aging, but not so severe as to support a diagnosis of dementia. While some of these persons go on to develop frank dementia some other patients do not. Up to the nineties there was not yet a clear consensus regarding nosology. Proposed nomenclatures included mild neurocognitive disorder, late-life forgetfulness, possible dementia, incipient dementia, benign senescent forgetfulness, senescent forgetfulness, and provisional dementia. There have been numerous attempts to define the transitional stage between normal aging and pathology. While terms such as incipient dementia, provisional dementia, and mild cognitive impairment refer to persons who are somewhat more severely impaired and have a relatively greater likelihood of eventually becoming demented (Flicker et al., 1991), terms such as benign senescent forgetfulness or late-life forgetfulness refer to persons with milder cognitive difficulties relative to their age peers

Neuropsychological assessment

who are less likely to go on to develop dementia. At the end of the nineties the term mild cognitive impairment (MCI) was proposed to a nosological entity to characterize individuals with subtle cognitive deficits, which are not sufficient to warrant dementia (Petersen et al., 1997). The original criteria defined by Petersen and coworkers included the psychometric substantiation of subjective memory complaints in absence of other cognitive disorders and repercussions on daily life as well as normal general cognitive functioning and absence of dementia (Petersen et al., 1997). While the concept of MCI has made it possible to identify individuals at high risk for dementia it has become clear that MCI is a heterogeneous clinical entity comprising a)individuals with isolated memory problems (amnestic MCI) which are thought to progress preferentially to Alzheimer’s Disease (AD), b) individuals with slight cognitive problems in multiple domains (multiple-domain MCI) which may progress mainly into AD or vascular dementia and c) subjects with isolated cognitive impairments other than memory (single-domain, non-memory-MCI) which may show progression to dementia types other than AD. Moreover, the heterogeneity refers also to the trajectory of progression as well as to etiological factors. Although more recently, the Petersen criteria have been revised by the European Working Group of the European Consortium on AD (Portet et al., 2006) and a three-step diagnostic procedure (syndrome-diagnosis, identification of subtype, etiological specification) has been proposed, there are still some unresolved issues, e.g. pharmacological treatment of “converters”, preventive strategies etc.

5 MCI and competency With reference to competency, there is some evidence that MCI-patients should be carefully assessed, since their overall legal capacity might be compromised already at a stage where potential converters do still not fulfil criteria of dementia. This has been shown by a study of Griffiths and colleagues (Griffith et al., 2003). The authors used a standardized psychometric ca-

pacity measure (The Financial Capacity Instrument [FCI]) consisting of 18 financial ability tests (tasks), 9 domains (activities), and 2 total scores to assess financial capacity in MCI patients and patients with mild AD along with a battery of neuropsychological tests sensitive to dementia. Relative to controls, the MCI group demonstrated impairments in a variety of cognitive domains. Moreover, MCI participants demonstrated impairments in FCI domains of conceptual knowledge, cash transactions, bank statement management, and bill payment, and in overall financial capacity. Although these impairments were defined as mild and only applied to a subset of patients with MCI they might have a significant impact in higher order activities of daily life such as financial and testamentary capacity.

6 Normal aging Although some healthy aging persons maintain very high cognitive performance levels throughout life, most older people will experience a decline in certain cognitive abilities. This decline is usually not pathological, but rather parallels a number of common decreases in physiological function that occur in conjunction with normal developmental processes. Thus, cognitive decline appears to be a normal consequence of aging in humans (e.g., Craik and Salthouse, 1992). This cross-cultural phenomenon is most pronounced in speed and flexibility variables (socalled fluid intellectual properties) and is found in virtually all mammalian species. The nosological category of Age-Associated Memory Impairment was proposed by a National Institute of Mental Health (NIMH) work group to describe older persons with objective memory declines relative to their younger years, but cognitive functioning that is normal relative to their age peers (Crook et al., 1986). This definition requires explicit operational and psychometric criteria to assist in identifying these persons. The more recent term, Age-Consistent Memory Decline, has been proposed as being a less pejorative label and to emphasize that these are normal developmental

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changes (Crook, 1993; Larrabee, 1996), are not pathophysiological (Smith et al., 1991), and rarely progress to overt dementia (Youngjohn and Crook, 1993). The DSM-IV (1994) has codified the diagnostic classification of Age-Related Cognitive Decline. While this nomenclature has the advantage of not limiting the focus solely to memory, it lacks the operational definitions and explicit psychometric criteria of age-associated memory impairment. For some older persons, however, declines go beyond what may be considered “normal” and are relentlessly progressive. These more malignant forms of cognitive deterioration are caused by a variety of neuropathological conditions and dementing diseases.

7 Cognition and competence To meet ecological challenges efficiently, human beings are equipped with a sophisticated and highly interwoven network of mental functions which may be summarized under the umbrella term of cognition. From the evolutionary point of view, these abilities may be regarded as the product of progressively refined complementary adaptations caused by selection pressure, which is exerted by ecological circumstances on human species. In psychological terms this well organized and orchestrated abilities are operationalized as intelligent behavior, meaning that a cognitive system is able to cope with this whole range of demands successfully. If, on the other hand, the cognitive system, which once has worked successfully, gradually fails to accomplish all these tasks within a certain range of accuracy, as it happens in Alzheimer’s disease, then dementia may be diagnosed. As already mentioned, the boundary between normal aging and early cognitive impairment is not sharply delineated and dementia represents just an extreme on a continuum between cognitive well-being and malfunctioning. Thus, by establishing a diagnosis of dementia, reference must be made to neuropsychological assessment procedures relying on established norms.

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8 History taking and neuropsychology Careful history taking is the most important initial step within the diagnostic process. The time of onset and nature and rate of the course of the difficulties may unmask experienced problems in everyday life and may also provide information important to differential diagnosis. The clinical interview provides an opportunity to assess for the presence of deleterious side effects of medication, substance abuse, previous head injury, or other medical, neurological, or psychiatric history relevant to diagnosis. Obtaining a family history of dementia is also relevant. Furthermore, it is important, when possible, to obtain behavioral descriptions and subjective estimations of cognitive performance from collateral sources such as family members and friends. This information can be obtained either through clinical interview or through memory complaint questionnaires. It is important to be particularly alert to discordance between self and family reports. When formal scales are used, discrepancies between self and family reports can be quantified (Feher et al., 1994; Zelinski et al., 1990). Depressive symptoms in elderly persons can mimic the effects of dementia (Kaszniak and Christenson, 1994). Psychomotor retardation and decreased motivation can result in nondemented persons appearing to have pathophysiologically determined cognitive disturbances in both day-to-day functioning and on formal neuropsychological testing. Depressive mood can also cause nondemented persons to over-report the severity of cognitive disturbance. Consequently, it is important to perform a careful assessment for depression when evaluating for dementia and age-related cognitive decline. Depression can already be assessed during history taking, so that the clinician can obtain information regarding the client’s body language and affective display. Formal mood scales (e.g., Beck et al., 1961; Yesavage et al., 1983) can also play an important role in assessing for depression and have the advantages of quantifying and facilitating the assessment of changes in mood over time. Sociocultural factors might also cause some older persons to underreport or overestimate depressive symptoms. It


might be emphasized that depression and dementia are not mutually exclusive. Depression and dementia and/or age-related cognitive decline frequently coexist in the same person. Moreover, depression can also be a feature of certain subcortical dementing conditions, such as Parkinson’s disease (Cummings and Benson, 1992; Youngjohn et al., 1992).

9 Cognitive testing The use of neuropsychological tests may represent the most important and unique contribution of clinical neuropsychologists to the assessment of dementia and age-related cognitive decline. Neuropsychological tests are standardized procedures which must be adopted in a uniform, reproducible manner to allow inferences with respect to the target behavior on the basis of a comparison between individual or group data with a population of reference. Once used in this spirit, they can be useful as screening procedures, as confirming some hypothesized features and also for staging as well as monitoring a disease course. Since in the clinical context it is common practice to use one and the same collection of cognitive tests to measure onset, severity and progression of AD, clinicians must also be alert to the fact that different neuropsychological tests have different sensitivities which qualify them either as detecting, staging or tracking tools. The study of Locascio and coworkers (Locascio et al., 1995) is a case in point. Their study aimed to identify specific cognitive deficits of AD and to separate such tests that qualify for detecting AD from normal controls and to distinguish these tests from other neuropsychological measures which are of help in either staging or tracking AD. Although, as a general result, AD patients performed significantly poorer in all cognitive domains it was shown that while delayed recall measures showed a sharp deterioration to an early floor other tests like semantic fluency and immediate recognition showed a more linear decline across time. The clinical implications of this study are manyfold. First, there is no linearity of cognitive decline

between different cognitive functions. Second, even within a specific domain (e.g., memory) the decremental trajectories may vary. Third, composite scores, which stem from intermingling subtests with highly discrepant slopes may obscure disease activity. As a consequence, the findings of Locascio et al. point to the difficulty in stratifying subjects with AD for group studies on the basis of specific cognitive tests. Thus, psychometric tests should be standardized, reliable, valid, and have normative data directly referable to the older population. Discriminant, convergent, and/or ecological validity should all be considered in selecting tests. If these methodological pitfalls are not sufficiently considered, then their influence may obscure possible differences which per se might give valuable informations, e.g. concerning the efficacy of pharmacological and/or behavioral treatment (e.g., masking of potentially good responder subgroups in pharmacological treatment studies). There are many screening tests as well as comprehensive approaches that are useful for these evaluations. Valuable sources and descriptions are given in Neuropsychological Assessment (3rd edn.) (Lezak, 1995), and A Compendium of Neuropsychological Tests (Spreen and Strauss, 1991). A useful compendium of scales widely used in old age psychiatry is given by Burns, Lawlor and Craig (1999) and while brief mental status examinations and screening instruments are not adequate for diagnosis in most cases, they should at least be adopted where a comprehensive assessment is not possible due to time and staff limitation. Besides the Mini-Mental-Status-Examination (Folstein et al., 1975) which is widely used as a brief and common clinical reference there are some more recent developments (e.g., DemTect – Kalbe et al., 2004) which avoid ceiling effects in earlier stages. Wherever possible comprehensive neuropsychological evaluations for dementia and age-related cognitive decline should be done, including tests or assessments of a range of multiple cognitive domains, typically memory, attention, perceptual and motor skills, language, visuospatial abilities, problem solving, and executive functions. However, in more advanced stag-

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es of dementia a comprehensive neuropsychological test battery may not be required but instead, more caregiver-related measures (proxy-questionnaires) should be adopted.

10 The estimation of premorbid abilitites When assessing for cognitive declines in older persons it is important to have baseline test data from earlier years against which current performance could be compared. Since this informations are often missing, premorbid abilities have to be estimated by taking into consideration socioeconomic status, educational level, occupational history, and client and family reports which can be converted into standard formulas (e.g., Barona et al., 1984; Blair and Spreen, 1989). However, clinical judgment can be an important part of this process. There are a number of systematic biases in human judgment that may lead to inaccurate clinical estimates of premorbid function (Kareken, 1997). Although various techniques have been used to estimate cognitive abilities in earlier years one should nevertheless be aware, that most measures of current cognitive functioning are agesensitive and thus can be affected by already ongoing dementia (Larrabee et al., 1985; Storandt et al., 1995). Once a person has been tested, these data can serve as a baseline against which to measure future changes in cognitive functions. Magnitudes and rates of cognitive change, as well as response to treatment, can also be determined by follow-up testing. In most cases a half-year follow-up interval is adequate for monitoring changes in cognitive performance, unless the client, family, or other health care professional report a more rapid decline, emergence of new symptoms, or changes in life circumstances. Interim follow-ups including proxy-interviews not involving formal testing may also be useful in many cases. Because declines in average levels of performance with age are observed on some tests, it is important that tests selected for use in the evaluation of dementia and age-related cognitive decline have

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adequate age-adjusted norms. It is also important to note that comparison of an individual’s test performance against even age-adjusted norms can be misleading if the individual’s earlier abilities fell outside of the population curve. Until recently, the relative lack of older adult norms posed a problem for clinicians, but better and larger older adult standardization samples are now available for many commonly used clinical tests. However, normative database for very old persons and for diverse linguistic and ethnic minorities as well as some other special populations (illiterates, low-IQ as well as high-IQ performers) is still scarce.

11 Domain-specific characteristics of cognitive decline In the following, we will present some characteristic features of early cognitive alterations in the domains of attention, memory, language visouconstruction and flexibility as they become evident in neuropsychological tests. A wealth of studies have shown that cognitive domains, as well as their respective subfunctions are not uniformly affected and also vary in their dynamics of decrement (Becker et al., 1988; Locascio et al., 1995; Rebok et al., 1990; Welsh et al., 1992). Thus, domainspecific testing should be a promising approach.

12 Attention Attention is most commonly used to refer to selectivity of processing. Neuropsychological studies with brain injured as well as healthy individuals have shown that attention may be further subdivided into specific domains that differ in their functions as well as in their anatomical basis (Posner and Petersen, 1990). Clinical studies sustain the view that different brain lesions may lead to distinct attentional impairments. Furthermore, more recent studies indicate an early decrement of attentional capacity in dementia (Perry and Hodges, 2000). Neurocognitive models distinguish between the following attentional domains:


(1) (2) (3) (4)

alertness (with tonic and phasic components) selective or focused attention divided attention vigilance or sustained attention.

While sustained attention refers to the ability to focus attention over an extended period of time the ability to concentrate on some single aspects is referred as selective attention. Distributing attentional abilities by focusing on different aspects simultaneously is called divided attention. The concept of Alertness is of fundamental importance, since it enables us to react to external demands promptly and timely. The ability to enhance the attentional capacity within milliseconds is defined as phasic alertness. This ability allows the individual to anticipate reactions towards incoming information. Its functional integrity is expressed via reduced reaction-time latencies in simple stimulusreaction-tasks under warning conditions. It is also mirrored in altered EEG-patterns (eg., so called readiness potentials or “Bereitschaftspotentiale”) which themselves reflect preparatory actions in the expectation of a stimulus. Thus, measuring alertness reactions is not only of help in a detection of a general CNS affecion, but it is also an excellent method for monitoring cholinergic drug-effects which are supposed to exert a strong influence on attentional functions. In everyday conditions, competency, as the clinical meaning of having the ability to plan and follow a meaningful action is warranted by basic attentional capacities, since they form basis of the receptive, integrative and expressive functioning within a highly structured cognitive network. Consequently, within the framework of formal exploration, especially when there is concern about competency, clinicians have to consider the following questions: (1) Is the patient able to to maintain a certain level of arousal (vigilance)? (2) Is the patient able to focus long enough his mental stamina towards some specific aspects of external inputs (concentration)?

(3) Is the patient able to keep pace with the amount and speed of incoming information (mental speed)? In a next step within the information processing stream there is a need to combine this incoming information with preexisting data (memory) and also to translate the input into a meaningful message (language) if this message should enable one to react adequately. Finally the incoming and outgoing information must be manipulated and monitored internally to disentangle some ambiguities or to revise some steps in order to avoid processing errors (cognitive flexibility).

13 Memory While memory traditionally was fractionated along a chronological axis into short-term (STM) and longterm memory (LTM), more actual subdivisions differentiate memory along its qualitative domains. Memory abilities may vary greatly among the different manifestations of dementia. Although there are some controversies among the content-based subdivisions of memory the distinction between explicit and implicit learning and memory domains is generally accepted. Explicit (or declarative) memory can be further subdivided into a semantic (general knowledge of the world stored in a “mental lexicon”) and an episodic (event-related, autobiographical-bound) domain. Whereas standard recall and recognition memory tasks demand explicit and conscious recollection of facts and events, implicit learning may occur without awareness. Declarative learning can be directly measured by explicitly asking the subject for the amount of items he or she is able to remember. Implicit learning and memory efficacy is measured indirectly as a change in the processing rate and/or amount of a stimulus due to prior exposure to that stimulus (“priming”). As a general rule, perceptual and repetition priming and also sensorimotor skill learning abilities are widely unaffected in most cortical Dementias (Gabrieli, 1996; Gabrieli et al., 1993) but can be severely compromised in subcor-

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tical processes (e.g., Parkinson’s Disease Dementia, PDD). It is a common feature of dementia that the immediate memory span is intact at initial steps while the working memory component, which is necessary to retrieve consolidated information during monitoring the incoming data stream to be stored long-term, is defective. This feature reflects early changes in executive capacity and becomes even more pronounced in some variants of frontotemporal dementia (FTD). Moreover, and with reference to the assessment of competence it is of practical importance to consider that while some subentities of FTD may be characterized by semantic failures (i.e., difficulties in naming and identifying the proper significance of a given word) some other forms may have intact memory functions in their early stages but may have problems in monitoring their mnestic capacity (i.e., telling what came first, which facts have already been mentioned etc.) due to a pronounced frontal-executive deficit.

14 Assessment of explicit memory One possibility to examine verbal-auditory and visuospatial short-term memory capacity is given by the digit-span and block-span tasks respectively. While in the digit-span task the examinee is asked to repeat a certain sequence of digits spoken by the examiner in the same order, in the block-span task he or she is asked to point to a certain sequence of blocks shown by the examiner. This is done by the help of a block-board (Corsi’s block-board). In both tasks the patients are confronted with progressively longer strings of items they have to touch sequentially. The inverted version of the same test procedures where the patient has to begin with the last string or block and to continue the string of presentation backwards is suited to tap working memory capacity since the subject has to perform a dual task mentally (keeping in mind the presented string of items while inverting the same string “in the mind’s eye”). It can be shown that even mildly demented patients fail to accomplish this task because it involves more working memory capacity, i.e., the ability to ma-

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nipulate incoming information internally before producing an output. Thus, in clinical practice it may be observed that the same patient who easily repeated 5 or even 6 digits forward will not be able to achieve the same number of items when performing the exercise in a backward condition. Inverted span-measure procedures may help to reveal early working memory deficits and clinicians should carefully look for discrepancies in the performance between forward and backward conditions of span-tests. It is evident that individual with a reduced working-memory load may exert comprehension difficulties which may prevent them to take proper decisions since this process may require to compare concurring alternatives. The verbal learning ability is also most compromised in dementia. While empirical data support the idea that recall as well as recognition are defective in AD some qualitative aspects of a learning slope which can be derived from list-learning-paradigms, like serial position effects, acquisition and forgetting rates, intrusion errors and number of false positives may be of substantial help in detecting pathological cognitive decline as well as in the differentiation between subgroups of patients from presumably different entities.

15 Linguistic functions Patients with AD have preserved orthographic and also syntactic processing abilities (Glosser et al., 1998; Waters et al., 1998). While these aspects of spoken language are long preserved in AD, the pragmatic aspects (which govern conversational rules) and also the semantic language processing abilities are found to be altered early in the course of the disease. The latter seem to be related to regional hypometabolism of the inferior temporal gyrus and inferior parietal lobule of the dominant hemisphere (Hirono et al., 1998). One clinical hallmark of early AD at the language level is the violation of communicative rules concerning clearness, saliency, thoughness and truth (Grice, 1975). This might lead to serious practical difficulties in the context of testimonies and other le-


gal affairs. Therefore, when exploring AD patients in clinical interviews, clinicians should be alert for communicative violations through phonologically and grammatically correct use of words and sentences (Fromm and Holland, 1989). Although these aspects are of practical relevance in showing high validity, unfortunately to date, the relevant scientific database is too small and there are only a few systematic linguistic analyses and formalized clinical practicable scoring systems to assess pragmatic language functions in dementia (e.g., Romero et al., 1995). Other language-related tests also reveal that category-based word-retrieval is progressively compromised in AD (Kessler et al., 1998). This is shown in controlled oral word association tasks as they require verbal organizational abilities, which are subserved by the frontal lobes. AD patients are found to be more compromised in semantic than in letter fluency. It is hypothesized that this finding is due to a partial degradation of the semantic structural-knowledge system while letter fluency is accomplished by the help of phonologic and lexical cues. Nevertheless, letter fluency seems to be highly correlated with disease progression (Kessler et al., 1998). Clinically, word fluency, is tested by using the “word fluency test” which is part of many dementia screenings. This test measures the spontaneous production of words beginning with a given letter (F, A, S) under time constraints. In normal individuals there is only little decline with age. There are extensive norms available for this procedure (Spreen and Strauss, 1991). Since this test shows a steady linear decline across time for patients with AD (Locascio et al., 1995) it is best being used for staging dementia severity.

16 Transcoding abilities Numeric abilities are of great practical importance and play an important role in testamentary and financial decision making. A possibility to screen for this function is offered by the transcoding-paradigm introduced by Tegner and Nybäck in 1990. Subjects are asked to

transcode written numbers presented one at a time into an alphabetic script. Several study groups found this function to be strongly impaired in AD-patients. When confronted with this task, AD-patients tend to intrude numbers into the written word. One possible explanation is that to write in alphabetic script requires the subject to suppress the more automatized behavior of using idiographic script by copying the numbers. This ability per se requires an intact ( frontal guided) shifting strategy enabling the subject to switch between controlled and automatized behavior.

17 Visuoconstructive abilities Deficits in constructional abilities including drawing are often early signs of degenerative dementia and mostly pronounced in Lewy-Body-Dementia (Hirono et al., 2005). Since it has been demonstrated that ADpatients with a poor performance on drawing tasks more often wander and become lost, this ability is important to investigate under practical aspects (Henderson et al., 1989). In a longitudinal study of Kirk and Kertesz (1991) where spontaneous drawing abilities of 38 AD patients were followed up for up to 3 years it could be demonstrated that drawings of AD-patients displayed fewer angles, impaired perspective and spatial relations, simplifications and overall impairment compared to those of control subjects. Interestingly these deficits were relatively independent of language or memory impairment measured over the same period. A characteristic finding in this domain is the so called “closing-in phenomenon”. This expressivevisuoconstructive dysfunction is characterized by the tendency of subjects when asked to reproduce a drawing to copy as near as possible to the model or even into it. In a study conducted by Gainotti and coworkers the authors found that this phenomenon is found significantly more often in AD-patients than in subjects with vascular dementia (Gainotti, 1992).

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18 Conclusion Dementias are clinically characterized by behavioral disturbances as well as progressive deterioration of cognitive abilities especially in the domains of attention, memory, language, flexibility and visuoconstruction. Neuropsychological tests, which specifically tap these functions, may facilitate diagnosis at an early stage of the disease. In order to avoid obscuration of diagnostic clarity clinical tests which should help to assess dementia as well as to monitor disease progression should be proofed critically as whether they qualify for one or the other purpose. The cognitive symptomatology may vary substantially among different forms of dementia leading to clinical syndromes with either predominantly attentional-mnestic, verbal-executive or visuoconstructive-apraxic accentuations of dysfunction. Since these clinical features may exert an important influence on individual competence ranging from societal to legal aspects of everyday activities they have to be taken into consideration in the assessment of older patients with suspected cognitive decline.

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in Alzheimer’s disease. Dement Geriatr Cogn Disord 9: 68– 73 Hirono N, Mori E, Ishii K, Ikejiri Y, Imamura T, Shimomura T, Ikeda M, Johnson H, Morris DK, JC, Galvin JE (2005) Verbal and visuospatial deficits in dementia with Lewy bodies. Neurology 65: 1232–38 Kalbe E, Kessler J, Calabrese P, Smith R, Passmore AP, Brand M, Bullock R (2004) DemTect: a new, sensitive cognitive screening test to support the diagnosis of mild cognitive impairment and early dementia. Int J Geriatr Psychiatry 19: 136–43 Kareken DA (1997) Judgment pitfalls in estimating premorbid intellectual function. Arch Clin Neuropsychol 12: 701–09 Kaszniak AW, Christenson GD (1994) Differential diagnosis of dementia and depression. In: (M. Storandt and G. R. VandenBos, eds.) Neuropsychological assessment of dementia and depression in older adults: a clinician’s guide, pp. 81–118. American Psychological Association, Washington, DC Kessler J, Bley M, Kerkfeld C, Mielke R, Kalbe E (1998) Wortgenerieren bei Alzheimer-Patienten – Strategien und Strukturen (Verbal fluency tasks in patients with Alzheimer’s disease – stategies and structures). Zs Neuropsychol 9: 30–41 Kirk A, Kertesz A (1991) On drawing impairments in Alzheimer’s disease. Arch Neurol 48: 73–7 Larrabee GJ (1996) Age-associated memory impairment: definition and psychometric characteristics. Aging Neuropsychol Cogn 3: 118–31 Larrabee GJ, Largen JW, Levin HS (1985) Sensitivity of age-decline resistant (Hold) WAIS subtests to Alzheimer’s disease. J Clin Exp Neuropsychol 7: 497–504 Lezak M (1995) Neuropsychological assessment, 3rd edn. Oxford, New York Locascio JJ, Growdon JH, Corkin S (1995) Cognitive test performance in detecting, staging and tracking Alzheimer’s disease. Arch Neurol 52: 1087–99 McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM (1984) Clinical diagnosis of Alzheimer’s disease: Report of the NINCDS-ADRDA work group under the auspices of Department of Health and Human Services Task Force on Alzheimer’s disease. Neurology 34: 939–44 Nussbaum PD (Ed.) (1997) Handbook of neuropsychology and aging. Plenum, New York McKeith G, Galasko D, Kosaka K, Perry E, Dickson D, Hansen L, Salmon D, Lowe J, Mirra S, Byrne E, Lennox G, Quinn N, Edwardson J, Ince P, Bergeron C, Burns A, Miller B, Lovestone S, Collerton D, Jansen E, Ballard C, de Vos R, Wilcock G, Jellinger K, Perry R (1996) Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy bodies (DLB): Report of the Consortium on DLB International Workshop. Neurology 47: 1113–24

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Chapter 2

BRAIN STRUCTURES INVOLVED IN DEMENTIA Matthias Brand and Hans J. Markowitsch

1 Introduction Neurodegenerative dementias are linked to severe damage to various brain structures and interconnecting fibres. These structural abnormalities are accompanied by additional functional brain changes. Both structural and functional alterations are found extensively in various brain regions including cortical and sub-cortical areas. However, dementia-type specific changes were described in the last years. For instance, dementia of the Alzheimer type is primarily associated with damage in the hippocampal region while brain pathology in fronto-temporal dementia is centred around the prefrontal cortex and the lateral temporal lobe. In recent years, investigations using structural and functional imaging techniques expanded our knowledge on brain correlates of dementia-type specific behavioural changes. These findings are also relevant for the diagnosis and differential diagnosis of dementias. In this chapter, we will summarise common findings concerning structural and functional brain abnormalities in patients with dementias of different aetiology. We will focus on the most prominent type of dementia, the Alzheimer’s disease (AD). In addition, we will briefly describe the neural correlates of dementia with Lewy bodies (DLB), fronto-temporal lobe degeneration (FTLD) including fronto-temporal dementia, semantic dementia and primary progressive aphasia as well as the most common findings in vascular dementias (VD).

2 Structural and functional brain correlates of dementias 2.1 Primary brain correlates of Alzheimer’s disease Alzheimer’s disease (AD) is often seen as a “hippocampal dementia” (Ball et al., 1985; see also the review by Mosconi, 2005). Indeed, there is convincing evidence that structures of the medial temporal lobes are primarily affected in patients with AD, including the hippocampal formation, the entorhinal and the perirhinal cortices as well as the parahippocampal gyrus (e.g., Kantarci and Jack, 2003; Ezekiel et al., 2004; a meta-analysis of studies that used structural and functional brain imaging techniques in AD can be found in Zakzanis et al., 2003). As a result of the critical function of the hippocampus and surrounding structures of the medial temporal lobe in memory processes (see Markowitsch, 1995; Markowitsch, 2000; Brand and Markowitsch, 2003; Piefke et al., 2003) damage to these structures in AD is considered to be the neural correlate of the cardinal symptom of memory impairments (e.g., Mortimer et al., 2004). Within the structures of the medial temporal lobe mentioned, the typical neuropathological changes associated with AD can be found even in the absence of clinical symptoms (Braak and Braak, 1991). The histopathological signs are neurofibrillary tangles (NFT) and beta-amyloid plaques (AP) accompanied by reductions of synaptic connections and neural loss leading to a general brain volume loss (atrophy). NFTs are believed to interfere with cytoskeleton integrity and probably result in neural dysfunction and neuronal death. NFTs can also be found in healthy

Chapter 2: M. Brand and H.J. Markowitsch

aging brains, however, their density is significantly higher in patients with AD (Braak and Braak, 1996). NFTs are primarily located in limbic and paralimbic regions, such as the hippocampus, the nucleus basalis of Meynert within the basal forebrain, the amygdala and entorhinal cortex, and are linked to memory dysfunctions in both patients with AD (e.g., Mortimer et al., 2004) as well as individuals with mild cognitive impairment (Petersen et al., 2006). In the course of AD, high densities of NFTs are also found in neocortical areas, such as the parietal and the frontal lobes, and are related to severity of dementia (Braak and Braak, 1991; Braak and Braak, 1996). The distribution of APs shows a high inter-individual variability. In addition, the density of APs is less intensively associated with cognitive decline than that of NFTs (Mesulam, 1999). Recent review articles also emphasise additional pathological signs in AD, such as changes of the density and the excitatory level of glutaminergic NMDA-receptors (Wenk, 2006) and a higher level of oxidative stress (Harman, 2006). Some authors also propose that the appearance of NFTs and APs is not closely related to developing dementia and that they are rather the consequence than the causation of the neurodegenerative process in AD. In addition, NFTs and APs can be present relatively independently from each other (Armstrong, 2006). Medial temporal volume loss is found consistently in patients with AD and a disease duration of less than four years (since clinical diagnosis) indicating that these changes occur at an early stage in the course of symptom progression. Beyond these characteristic lesions, patients with AD also suffer from frontal lobe damage primarily affecting the dorsolateral and orbitofrontal section, the basal forebrain (Teipel et al., 2005) and the temporo-frontal junction area (Salamon et al., 2004). The neocortical lesions are considered the primary correlates of cognitive impairment beyond memory disturbances, such as language problems, deficits in problem solving and other executive functions which can severely affect activities of everyday life and also co-vary with symptoms of anosognosia (Kalbe et al., 2005; Marshall et al., 2006; Salmon et al., 2006). Frontal lobe damage

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can also occur at the early stages, but is less prominent compared to the medial temporal lobe abnormalities mentioned (Zakzanis et al., 2003). In addition, there is consistent evidence that the amygdala and the superior temporal gyrus are severely affected at an early stage of AD (e.g., Galton et al., 2001; Basso et al., 2006). In the course of the disease, volume loss can be found in widespread brain regions including various sub-cortical structures beyond the characteristic cortical atrophy. Concerning sub-cortical lesions, parts of the basal ganglia (i.e., putamen, globus pallidus and caudate nucleus) are affected (Zakzanis et al., 2003). However, effects on basal ganglia are less severe than the volume loss of neocortical regions. Tissue loss in parts of the thalamus was also found in patients with Alzheimer’s disease, although this pathology is not very specific as it is also found in other neurodegenerative disorders. The volume loss of the medial temporal lobe, especially damage to the hippocampal formation as mentioned above, is the most reliable measure in differentiating between patients with AD at an early stage and healthy individuals (e.g., Wang et al., 2003). However, a recent study by van de Pol et al. (2005) principally confirmed smaller hippocampal volume in patients with AD compared to control subjects, although the authors reported no differences between patients with AD and patients with fronto-temporal dementia (FTD). Comparable results concerning hippocampal atrophy in patients with FTD were reported previously (Frisoni et al., 1999; Boccardi et al., 2003; but see also the study by Ibach et al., 2004, mentioned in Sect. 2.3). In addition, there is also evidence for hippocampal damage in patients with semantic dementia comparable with that found in AD (Galton et al., 2001). Therefore, hippocampal volume loss is less specific for AD than previously assumed, however, it is still the most prominent and most frequently described pathology which is correlated with memory decline in patients with AD. In addition, a recent study by Apostolova et al. (2006) indicated that those patients with mild cognitive impairment and smaller hippocampal volume have a higher risk to convert to AD than patients with mild cognitive impairment and

Dementia and brain structures

normal hippocampal size. Although their samples of patients were small and the time between the baseline examination and the follow-up was only three years, the authors reported significantly reduced volume of the hippocampal formation, especially the CA1 region and the subiculum, in the six patients who converted from mild cognitive impairment to AD. The results reported by Apostolova et al. (2006) principally replicated earlier findings emphasising the rate of hippocampal atrophy as a key index for the conversion from mild cognitive impairment to AD (e.g., Grundman et al., 2002) and for the classification of healthy elderly individuals, patients with mild cognitive impairment and patients with AD (e.g., Convit et al., 1997). Studies with 18F-2-fluoro-2-deoxy-D-glucose positron emission tomography (FDG-PET) which aimed to reveal global functional alterations (measured by resting state glucose utilisation) of the demented brain in patients with AD found consistently lower metabolic rates throughout the cerebral cortex, especially surrounding the temporo-parietal cortex (cf. Mosconi, 2005). Figure 1 demonstrates an FDG-PET result in a patient with mild AD showing a pronounced hypometabolism in temporal and parietal regions with a dominance within the left hemisphere. FDG-PET can differentiate between patients with AD and normal healthy subjects at an early stage, when examinations with magnetic resonance imaging (MRI) do not detect structural differences in specific brain regions (Herholz, 1995; Herholz et al., 2002; Herholz, 2003). Global dementia severity (e.g., measured with the Mini Mental State Examination [MMSE], Folstein et al., 1975), is also linked to glucose metabolism, primarily to the

metabolic changes in parietal, temporal and frontal brain regions (Salmon et al., 2005). There are also various studies that found the FDG-PET method useful for the differential diagnosis of AD and other types of dementia as well as AD and mild cognitive impairment (see the recent review by Mosconi, 2005). On a neurochemical level, the cholinergic system is considered to be severely affected in AD and it might be one of the key systems involved in the progression of memory decline. Previous studies proposed that cholinergic depletion in structures of the basal forebrain, primarily the basal nucleus of Meynert, were characteristic for AD (Whitehouse et al., 1982; Whitehouse, 1998). However, recent studies using functional imaging techniques showed that cholinergic alterations can also occur in other brain regions critically involved in memory processes, such as the hippocampal formation and the cingulate gyrus (e.g., Herholz et al., 2004; Goekoop et al., 2006). In summary, AD co-varies with various structural and functional brain changes, primarily affecting limbic and paralimbic structures at an early stage of the disease. Here, the hippocampal formation is the main structure involved in dementia of the AD type. However, the hippocampus is also involved in other forms of dementias (see the paragraphs below). In the course of the disease, further structural and functional alterations occur. The abnormalities in the parietal, the temporal and the frontal lobes are the main neocortical correlates of the general cognitive deterioration in patients with AD.

Fig. 1. An AD patient’s FDG-PET showing hypometabolic zones (dark-grey) within the temporo-parietal cortex and frontal lobe, primarily on the left side. The patient suffered from mild dementia (MMSE score = 22). We thank the Max-Planck-Institute for Neurological Research, Cologne, for the assignment of the figure

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2.2 Primary brain correlates of Lewy body dementia Dementia with Lewy bodies (DLB) is considered the second most common entity of neurodegenerative dementias involving severe cognitive decline intense enough to compromise activities of everyday life (cf. McKeith et al., 1996; McKeith, 2004). However, in patients with DLB cognitive functioning is more fluctuating than in patients with AD, and DLB is associated with visual hallucinations and motor symptoms (Geser et al., 2005). The impairments in mobility and selfcare components of activities of daily living, presumably linked to extrapyramidal dysfunctions, are also stronger in DLB compared with AD (McKeith et al., 2006). However, the differential diagnosis of AD and DLB is difficult, because of the broad overlap of clinical symptoms in these dementias. Studies with structural imaging techniques (computer tomography [CT] and MRI) aimed to reveal differential neural correlates of DLB and AD but without evidentiary results concerning regions that are involved only in one of the two diseases (cf. Small, 2004). Considering global cerebral atrophy, several studies found no significant differences between patients with AD and DLB – at best, slightly lower volume reductions in patients with DLB (e.g., O’Brian et al., 2001). However, there is solid evidence for differential involvement of the medial temporal lobe in AD and DLB. For instance, Barber et al. (2000) found less severe medial temporal lobe atrophy (including atrophy of the hippocampal formation and the amygdala) in patients with DLB compared to those suffering from AD, when matched regarding global dementia severity. However, both groups had smaller medial temporal lobes than healthy elderly subjects (see also the comparable results reported by Burton et al., 2004; Tam et al., 2005). Some authors hypothesised that the visual hallucinations typically found in patients with DLB but not in AD, may correlate with regional atrophy of the occipital lobes. However, in the study by Middelkoop et al. (2001), no specific differences were found between these two groups and normal individuals, and

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occipital volume was not related to the presence of hallucinations in these subjects. By contrast, Harding et al. (2002) found a correlation between the density of Lewy bodies within the temporal lobe and visual hallucinations in patients with DLB. In their post mortem study, they included a total of 63 brains with Lewy bodies and documented clinical signs of DLB (including descriptions of hallucinations, dementia severity and cognitive fluctuation as well as clinical response to levodopa therapy etc.). The authors reported that the brains of cases with visual hallucinations showed higher densities of Lewy bodies in the amygdala and the parahippocampal gyrus but not in the occipital lobes. The distribution of Lewy bodies in the temporal lobe was, however, unrelated to cognitive fluctuation and severity of dementia. On the other hand, studies with functional imaging techniques (primarily PET) demonstrated hypometabolism (or hypoperfusion in studies using single photon emission computed tomography [SPECT], respectively) of the occipital lobe in patients with DLB compared to healthy individuals and – at least in some studies – compared to patients with AD (e.g., Ishii et al., 1998; Lobotesis et al., 2001; Okamura et al., 2001). The hypometabolism of the occipital lobe might be a critical correlate of hallucinations, as Imamura et al. (1999) found an occipital hypometabolism in patients with DLB compared to patients with AD. The hypometabolism was more pronounced in patients with than in patients without hallucinations (see also Higuchi et al., 2000). The primary sensorimotor cortex is consistently described as being unaffected, while the parietal and temporal cortex as well as the prefrontal section of the frontal lobe show also metabolic reductions. In addition to the changes of glucose utilisation described above, some recent studies also revealed specific alterations in dopamine functioning in patients with DLB potentially distinguishable from that found in patients with AD (Hu et al., 2000; review in Herholz, 2003). There is also evidence for a cholinergic involvement in the symptomatology of DLB (Herholz et al., 2000), but this seems to be less specific than the dopamine abnormalities described above.


2.3 Primary brain correlates of dementia with fronto-temporal lobe degeneration The term “fronto-temporal lobe degeneration” (FTLD) appoints to a relatively heterogeneous category of syndromes linked to atrophy of frontal and temporal regions. One typical form of dementia linked to frontal abnormalities was formerly known as Pick’s disease. Nowadays, three syndromes are subsumed by the term FTLD: fronto-temporal dementia (FTD), semantic dementia, and primary progressive aphasia (Neary et al., 1998). Beyond the commonality of primary frontal abnormalities in these syndromes, they differ regarding their neural correlates in detail. Recently, Short et al. (2005) investigated potential differential patterns of atrophy in patients with FTLD and AD with respect to their clinical symptoms. They found that patients with FTLD and problems in personal conduct (FTD patients) had a focus of atrophy in the prefrontal cortex (bilaterally). In contrast, patients classified as suffering from semantic dementia showed atrophy centred towards the left temporal and both frontal lobes. This study emphasises that the clinical presentation of patients suffering from specific types of FTLD co-vary with differential patterns of structural brain changes. The involvement of the frontal lobes in symptoms of FTD was recently confirmed by the study of McMurtray et al. (2006). The authors examined behavioural measures and perfusion rates using SPECT in a sample of 74 patients with probable FTD. The patients showed a more pronounced right- relative to left-sided hypoperfusion which was correlated with apathy, loss of insight, and further behavioural symptoms. The less distinctive temporal hypoperfusion was linked to hypomania-like tendencies. Although this study has a number of limitations (e.g., the rather vague measure of functional abnormalities not allowing specific conclusions about the relevance of small cortical or subcortical regions), it emphasises the association between frontal dysfunctions in patients with FTD and their behavioural changes. The involvement of the prefrontal cortex, in particular the orbitofrontal and the ventromedial prefrontal cortex, and ad-

ditionally the anterior cingulate gyrus in emotional and behavioural deficits in patients with FTD was also demonstrated by Peters et al. (2006). However, there are also some studies that highlight the similarities of the syndromes subsumed as FTLD. For instance, Ibach et al. (2004) investigated metabolic changes in patients with FTLD (including patients with FTD, semantic dementia and primary progressive aphasia) using FDG-PET in comparison to glucose utilisation in patients with early AD. Five regions were revealed showing significant differences in glucose utilisation between FTLD and AD patients. In four of them, namely the left insula, the left inferior frontal gyrus, as well as the left and right medial frontal gyrus, patients with FTLD had a lower metabolism than the patients with AD. Only one region – the right middle temporal gyrus – was more active in patients with FTLD than in AD patients. Unfortunately, the sample size of patients with FTLD was too small to differentiate validly between the three subtypes of FTLD. Nevertheless, the results from the between-groups analyses demonstrate that the syndromes subsumed as FTLD share some major neural correlates that can be contrasted from those found in patients with AD. However, there is also evidence for a differential pattern of hypometabolism of frontal and temporal regions in FTD relative to semantic dementia. For instance, Diehl et al. (2004) examined cerebral metabolic patterns of 25 patients with FTD and nine with semantic dementia and contrasted the results with the pattern of healthy participants. They found a frontal hypometabolism sparing the primary motor area in patients with FTD relative to control subjects while the patients with semantic dementia showed primarily left-sided temporal reduction of glucose utilisation compared with healthy individuals. However, a direct comparison of the metabolic patterns of the FTD patients and those with semantic dementia was not performed. Therefore, one cannot draw explicit conclusions about shared neural patterns in FTD and semantic dementia. Concerning different patterns of neural atrophy in FTD, semantic dementia and progressive aphasia, only a few studies compared these three

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Table 1. Summary of characteristic FDG-PET findings in dementias (modified from Table 1 of Herholz, 2003). Dementia

Brain regions with decreased glucose utilisation (reduced FDG uptake)

Alzheimer’s disease

hippocampal formation and surrounding structures of the medial temporal lobe temporo-parietal association cortices posterior cingulate gyrus and precuneus frontolateral regions (at least partially)

dementia with Lewy bodies

primary and secondary visual cortex temporo-parietal association cortices posterior cingulate gyrus and precuneus prefrontal cortex

fronto-temporal dementia

predominantly medial frontal lobe, also frontolateral and temporal regions

semantic dementia

temporo-parietal regions prefrontal cortex

primary progressive aphasia

temporal lobe

subcortical ischemic vascular dementia

basal ganglia (nucleus caudatus), thalamus, variably also cerebellum, sensorimotor region, occipital lobe

conditions directly. Therefore, results reported must be seen as preliminary. However, while there is valid evidence for an involvement of the frontal and – at least partially – the lateral part of the temporal lobes in all three subtypes of FTLD, hippocampal atrophy is regarded as non-existent in primary progressive aphasia and less severe in FTD relative to semantic dementia (van de Pol et al., 2005). In summary, the primary brain structures involved in patients with FTLD are firstly frontal regions (partially excluding the motor cortex) and secondly the temporal lobes. For the behavioural problems mainly occurring in patients with FTD, the frontal abnormalities are the most dominant neural correlate. For memory and language impairments seen in patients with semantic dementia and primary progressive aphasia, the (left) temporal lobe seems to be critical. Table 1 summarises prominent functional changes in dementias of different origin, as revealed by FDG-PET.

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2.4 Primary brain correlates of vascular dementia Vascular dementias imply various conditions of dementia resulting from cerebrovascular disease. In accordance with the heterogeneous aetiologies of vascular dementia, such as stroke, subcortical ischemia, multiple micro-infarcts, and small vessel disease, the potential brain lesions and functional changes vary extensively. Within this chapter, we can only briefly summarise some of the most important current findings. A recent review can be found in Kalaria et al. (2004). The most prevalent condition of vascular dementias is the subcortical ischemic vascular disease (SIVD) for which hypertension and diabetes are the most relevant risk-factors. Patients with SIVD suffer from executive dysfunctions, as one of the most prominent neuropsychological impairments, beyond memory and other cognitive deficits. On structural MRI, a reduction of frontal white matter and atrophy of parts of the basal ganglia (i.e., the caudate nucleus) can be observed (Barber et al., 2002). Kerrouche et al. (2006) compared functional brain abnormalities in patients with SIVD and AD using FDG-PET. They reported an overlap of hypometabolic zones in the two


patient groups affecting the posterior parietal cortex, precuneus, retrosplenial cortex, lateral temporal lobe, prefrontal regions, and the anterior section of the hippocampal formation. However, in SIVD, metabolic rates in basal ganglia, thalamus, cerebellum, sensorimotor area, occipital lobe and further neocortical regions were lower than in AD. In contrast, AD was primarily associated with more pronounced hypometabolism relative to SIVD in structures located in the medial temporal lobe, in particular the anterior hippocampus, the entorhinal, perirhinal, and temporopolar cortices. The authors conclude that the different patterns of hypometabolism in AD and SIVD reflect the characteristic pathologies of the diseases comprising a disconnection of the prefrontal cortex from the basal ganglia and thalamus in SIVD in contrast to the medial temporal abnormality as the main pathology in AD.

3 Summary In the most common forms of dementia, widespread brain regions are affected by structural and functional pathologies. A common neural correlate of various dementia conditions is an atrophy of the hippocampal formation and surrounding structures of the medial temporal lobe accompanied by a decrease of their functional integrity. These pathologies are considered the neural correlate for memory declines as one of the cardinal symptoms of various dementias. Medial temporal lesions and functional decline are the main pathology of AD but can also occur in other dementias, such as semantic dementia and FTD. Furthermore, in several dementias structural and functional changes of frontal regions also occur – or are the main pathology, e.g., in FTD and LBD – compromising executive functioning and causing behavioural abnormalities. The functional imaging techniques are sensitive to even minimal differences in brain functioning between clinical groups and are therefore an important tool in the diagnosis and differential diagnosis of dementia.

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Chapter 3

MEDICAL FACTORS INTERFERING WITH COMPETENCE IN DEMENTIA Maria E. Soto and Bruno Vellas

1 Introduction Alzheimer’s disease (AD) is an increasingly common condition in older people with a median survival duration from initial diagnosis of 4.2 years for men and 5.7 for women (Larson et al., 2004) and it is responsible for 75% of all dementias. AD is characterised clinically by cognitive impairment, dominated by memory complaints, which may be associated with a syndrome of aphasia, apraxia and agnosia, and disorders of executive function and judgement. This global impairment leads to a progressively affected competence in patient’s everyday life, initially altering the more complex activities, such as working (intellectual or physical skills), social activities or leisure activities and finally the simple basic activities such as eating, bathing or walking. Furthermore, the natural course of the disease is also associated with a number of specific complications such as behavioural and psychological symptoms (BPSD), weight loss, loss of functional autonomy, enhanced risk of falls and injuries which accelerate the process of dependence and the loss of quality of life. Any of these complications can constitute a major burden both to the patient and to the family (Nourhashemi et al., 1997). Moreover, concomitant medical factors such as hearing and vision impairment, infections or cerebrovascular events could appear along the course of the disease worsening its prognosis. All this requires greater resources’ utilisation, both medical and nonmedical, representing a major public health problem. At the present, the management of AD should not be solely reduced to a specific pharmacological treatment. This one should be contemplated as part of a care plan which includes a regular follow-up with a

Comprehensive Geriatric Assessment, CGA (Rubenstein, 1984) carried out in all patients at the time of the diagnosis and after, every six months during the follow-up. The aim of the CGA in a regular follow-up is to detect complications in order to treat them or even prevent them. One of the essential aims of medical follow-up of Alzheimer’s patients and related disorders is to preserve a satisfactory physical independence and in consequence a better quality of life.

2 Physical impairment Decline in physical autonomy is a major component of symptoms in dementia. By definition, functional impairment in dementia must be related to the cognitive decline. There are a number of other factors such as parkinsonism and co morbid disorders that by themselves may also contribute significantly to physical disability. Furthermore, AD and other related disorders are one of the main causes of dependency among the older population (Aguero-Torres et al., 1998). Activities of daily living (ADLs) are the activities that are needed for self-care and independent living. They include the basic activities of daily living (basic ADLs) and the instrumental activities of daily living (IADLs). Maintenance of performing the ADLs, basic and instrumental, independently, known as functional autonomy, is an essential concept in geriatric medicine. Among the older population, loss of this function is a common manifestation of disease. In fact, the loss of competence in different activities such as the ability of shopping, managing money or travelling might be the reflection of an executive and

Chapter 3: M.E. Soto and B. Vellas

memory dysfunction, and be the first signs of cognitive decline. Recent disability of sewing or preparing meals could be the result of praxis disorders. In addition, loss of functional competence has prognostic connotations in treatment response, morbidity and mortality and it is associated with an increase in hospitalisation, institutionalisation, and the greater use of health services and loss of economic self-sufficiency (Fried et al., 1998). This is especially important in older adults with dementia. Loss of functional autonomy leads to a progressive dependency that evolves into a loss of quality of life, of both patient and the family, and, loss of dignity.

2.1 Measurement of functional autonomy Physical autonomy is a parameter easily to measure by simple scales. Interviews are usually preferred to performance-based tests. Functional scales have been established in the geriatric literature and listed as instruments used to assess physical function. Some of these scales have been used in clinical trials and there are others that are usually used in clinical practice worldwide such as the Katz basic ADL scale (Katz et al., 1963). The items of the Katz scale are listed in Table 1, and are answered as “yes” or “no” independently to perform. All of the Katz items are basic-ADLs related and it is used to evaluate elderly persons’ dependence in hospital, living in retirement homes, or being cared for in their home. The instrumental activities of daily living are usually measured in clinical practice by the Lawton IADL scale (Lawton, 1969) which items are listed in Table 2. It is readily apparent that IADLs are lost earlier in dementia, whereas basic ADLs are lost in more advanced stages of the disease. Basic- ADL’s functional abilities decline also in a predictable temporal order according to the complexity of the ADL: bathing, dressing, grooming, toileting, walking, and eating. The aim of using these tools to evaluate physical disability is not only to corroborate the dementia diagnosis at the first visit. In fact they should be used in every follow-up visit in order to (1) establish

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Table 1. Items of the Katz basic ADL scale • • • • • •

Bathing Dressing Toileting Transferring Continence Feeding

ADL: activities of daily living Table 2. Items of the Lawton IADL scale • • • • • • • •

Shopping Preparing meals Travelling Doing housework Doing laundry Using telephone Taking medications Managing money

IADL: instrumental activities of daily living

an objective in physical therapeutic (stimulation of basic-ADLs and/or IADLs letting the patient perform those activities in which he is still capable to, trying to avoid failure situations), (2) to set up medical and non-medical support at home which will be determined by the qualitative alteration of basic-ADL and IADL scales and (3) to evaluate the severity and the prognosis of the disease. Continued participation in all ADLs is important for the self-esteem of the individual with dementia. IADLs should be simplified because the individual with dementia may still be able to participate in some steps but not in the entire activity. Supportive services may allow an individual with dementia to continue living in his/her own home. However, a strategy too “over protected” or restrictive could result in behavioural and psychological symptoms (BPSD) such as depression, agitation or aggressiveness or in loss of physical ability. But safety and stress induced by these activities have to be considered. Thus, the dilemma of risk-benefits and safety-patient’s right and autonomy is always present and needs to be periodically assessed. Decreased ability to ambulate is usually seen at the severe stages. Severe mobility problems arrive in

Medical factors interfering with competence in dementia

all patients at the very end stage of the disease and patients eventually become permanently bedridden. Such a state is always accompanied by its own complications: pressure sores, infections, undernutrition, and specific BPSD such as screaming. This later stage is characterised by high morbidity, loss of quality of life, and suffering, all of which also result in high medical costs. Thus, it seems to be essential to maintain ambulatory ability for as long as possible. Ability to walk can be promoted by a regular walking program and by assistive devices such as Marry Walker (Trudeau et al., 2003).

3 Balance and gait disorders and falls In patients with Alzheimer’s disease, posture rapidly becomes impaired as a consequence of aging (arthritis, impaired vision, muscle wasting, etc.) but this may also be directly related to dementia or to medication. Disturbances of equilibrium can lead to numerous falls and fractures, or to abusive use of restraints. Accidents are then even more frequent. Balance disorders and falls have major psychological consequences leading to anxiety and a feeling of insecurity. They can result in decreased physical activity affecting competence in many areas as mentioned previously, and in addition, in social skills with loss of social contact, resulting in patient’s isolation Patients with dementia experience greater impairment of gait and balance and present an increased frequency in falls in comparison to elderly with normal cognition (Franssen et al., 1999). The estimation of annual incidence of falls in patients with dementia varies between 70% and 85%. Patients with dementia who experience falls are also at increased risk for sustaining serious injury. The annual incidence of fracture is approximately 7% in this patient group, which is 1.5–3.0 times the rate in cognitively normal fallers (Campbell et al., 1990). In addition, patients with dementia have a poorer prognosis once a fall has occurred. They are less likely to make a good functional recovery after significant injury, are five times more likely to be institutionalised, and have a

higher mortality after hip fracture at one year than non demented patients (Baker et al., 1978).

3.1 Causes of falls in AD patients Falls in AD patients may have a multifactorial nature. Many studies have identified AD as an independent risk factor for falls (Jantti et al., 1995). Determining the mechanisms by which AD increase the risk of falls in elderly, however, has proved more difficult. The major specific factors that have been implicated in falls in patients with dementia are: postural instability, medication, neurocardiovascular instability and environmental factors. Concerning postural instability, older people display greater instability and an abnormal gait pattern; visual acuity, propioception, vestibular function, and reaction time contribute to these abnormalities. Available evidence does suggest that the more marked gait and balance abnormalities in subjects with AD are attributable to disorders with the central processing of information that is required to maintain postural instability (Chong et al., 1999). Psychotropic medication (especially antipsychotics, benzodiazepines, tricyclic antidepressants, anxiolytics, and hypnotics) have been associated with a doubling of fall risk in patients with dementia by affecting balance, reaction time, and other sensorimotor functions or by causing orthostatic hypotension as a side effect. Extrapyramidal side effects possibly increase the risk of falls (Robbins et al., 1989). Most of the association between psychotropic medication and falls in AD patients could be explained by increased prescription of these drugs for management of agitation and wandering. Neurocardiovascular instability refers to impaired cardiovascular regulation that is detected clinically as orthostatic hypotension, vasovagal syncope or carotid sinus hypersensitivity. Autonomic dysfunction has been particularly demonstrated in patients with AD, which suggests a theoretical reason for an increased prevalence of orthostatic hypotension (Prettyman, 1998).

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The role of the environment in AD patients with falls is controversial, with some studies reporting an association between falls and environmental hazards in both the community and institutional care (Rubenstein et al., 1994) and others finding no association (Tinetti et al., 1988). The limited evidence leaves the contribution of the environment to falls in patients with AD also not clear.

3.2 Balance disorders and falls management In order to evaluate walking and alteration in gait and balance the Tinetti test could be used. Several studies have shown that preventing falls in older people who do not have dementia is possible. A multifactorial approach that targets gait and balance, medications, environmental risk factors, orthostatic hypotension and physiotherapy are successful in preventing falls (Wolf et al., 1996). Despite a significant risk of falls and the attendant adverse consequences in patients with AD, little research has been directed specifically at the prevention of falls in this patient group. Physiotherapy in subjects with dementia may have a role in fall prevention. Thus, regular physical exercises could be an important part of the systematic management of patients with AD.

4 Weight loss When he first described the disease in 1906, Alois Alzheimer emphasised the occurrence of weight loss in his patient. However, this weight loss has been mistakenly considered as occurring at the late stages of the disease. We now know that it can occur as soon as the first symptoms of the disease appear. The sooner the management strategy is set up, the more effective it will be. Otherwise, we may rapidly find ourselves confronted with undernourished, anorexic subjects, where there is very little room for manoeuvre between doing nothing (often seen as abandonment of treatment) or setting up enteral nutrition (which is then seen as artificial prolongation

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of life), whereas early on, especially in subjects who live alone at home, a visit from a home help will often be sufficient to assist these patients in doing their shopping and preparing their meals. It therefore appears to be essential to assess the nutritional status of each Alzheimer’s patient, particularly if he or she lives alone or has only little family support. The pathophysiological mechanisms of weight loss are complex and have only partially been elucidate. The alteration of nutritional status may be secondary to the inability to perform the activities of daily living or to disturbances of eating behaviour. In the severe stages of the disease, behavioural disturbances and food disorders, e.g., refusal to eat and wandering, are some of the most difficult complications of the disease for health practitioners to treat. However, numerous studies have shown that weight loss is observed in the course of the disease even when the subjects still have a satisfactory energy intake. Certain authors suggest that the atrophy of the internal temporal cortex or the effect of the e4 allele of the apolipoprotein E may play a role in weight regulation (Grundman et al., 1996; Vanhanen et al., 2001).

4.1 Consequences of weight loss Clinical practice shows that weight loss is accompanied by a variety of complications (decreased immunity, infections, muscle atrophy, falls and fractures), which affect the state of health and increases the risk of institutionalisation and mortality. Involuntary loss of muscle mass with aging, termed sarcopenia, is a widespread condition in AD patients, associated with a reduction in muscle strength and function which gradually leads to impairment in the activities of daily living, progressive dependence and pressure sores. Malnutrition itself would not affect directly any competence, but its complications such as sarcopenia and physical impairment would be responsible of affecting many competences from advanced activities of daily living (driving, sports, working) and IADL, in a first time, and basic-ADL in an ultimate step (see Tables 1 and 2).

Medical factors interfering with competence in dementia

4.2 Assessment and management of weight loss The nutritional status of the elderly person can be quickly and easily evaluated with the Mini Nutrition Assessment (MNA). The MNA is the most validated tool to assess nutritional status in older population. It is also useful in Alzheimer’s patients. The MNA is able to differentiate individuals with good nutritional status (score > 23.5), with poor nutritional status (< 17) or at risk of malnutrition (between 17 and 23.5) (Vellas et al., 1999). It is very important to assess weight regularly, every six months, in AD patients, as well as assessing their nutritional status with the MNA at least once a year. If the patient has some relevant life event, his/her nutritional status should be reassessed once again. If the MNA score is less than 23.5, it is necessary to look carefully at each MNA item to determine where the patient loses points to be able to correct the factors responsible for the altered nutritional status. If the MNA is less than 17, the patient is more likely already to present protein-caloric undernutrition and thus, a more intense strategy should be set up. Caregiver education and/or with oral supplementation have demonstrated to increase weight, MNA score, and muscle mass in Alzheimer’s patients (Lauque et al., 2004). It is essential to improve nutritional intake as soon as possible, in the earliest stage of an altered nutritional status, since once the protein-caloric undernutrition is established it is very difficult to fight against it and its severe complications. On the other hand, complications related to tube-feeding are clearly more important than the benefit in the very severely demented patients (Mitchell et al., 1997)

5 Other physical symptoms Alzheimer’s disease is one of the causes of epilepsy and cerebrovascular events in the elderly subject. Numerous patients develop extrapyramidal symptoms. Resting tremor is rarer than in idiopathic Parkinson’s disease or in drug-induced striatal syndromes. On

the other hand, rigidity and bradykinesia or a “parkinsonian” gait are more frequent. At a late stage of dementia, painful muscle and joint contractures may develop, leading to a permanently bedridden state. The value of passive mobilisation of the joints to prevent those contractures must be stressed. Even though, visual and hearing impairment are not direct complications of dementia, they are important medical factors to assess and to correct, when this is possible, since sensorial deficiency may aggravate the disease prognostic and accelerate its complications such as falls and physical decline.

6 Conclusions With the aging of the population, Alzheimer’s disease and related disorders has become a major public health problem. Management of the disease should not be only limited to a specific pharmacological treatment. A global approach is needed to set up through out a Comprehensive Geriatric Assessment (CGA) which will also take into account other facets of the disease, along with the cognitive one, such as loss of independence, weight loss, falls or balance disorders. Cognitive dysfunction (memory loss, syndrome of aphasia, apraxia and agnosia, and disorders of executive function and judgement) are firstly responsible for affecting competence both in intellectual skills (e.g., the ability to fulfil one’s financial obligations, to play chess or do crosswords, to work, to plan a trip, to use a computer…) and in mainly physical skills (e.g., the ability to do some sports, to do housework or laundry, to get dressed or use the toilet…). In addition, dementia complications such as physical impairment, weight loss, falls and balance disorders, and parkinsonism may also affect competence. The majority of these medical factors affect competence by the resulting impaired mobility mechanism. All competences affected interfere with social, family and working lives. CGA should be carried out in all patients at the time of diagnosis and then every six months. The

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concern of the clinician at the present time must be to identify patients as early as possible in order to rapidly set up a medical and non-medical intervention strategy, with the essential aim of preserving as long as possible satisfactory independence and, thus, better quality of life for the patient and his/her family.

References Aguero-Torres H, Fratiglioni L, Guo Z, Viitanem M, von Strauss E, Winblad B (1998) Dementia is the major cause of functional dependence in the elderly: 3-year follow-up data from a population-based study. Am J Public Health 88: 1452– 56 Baker BR, Duckworth T, Wiles E (1978) Mental state and other prognostic factors in femoral fractures of the elderly. J R Coll Gen Pract 28: 557–59 Campbell AJ, Borrie MJ, Spears GF, Jackson SL, Brown JS, Fitzgerald JL l (1990) Circumstances and consequences of falls experienced by a community population 70 years and over during a prospective study. Age and Aging 19: 136–41 Chong RKY, Horak FB, Frank J, Kaye J (1999) Sensory organization for balance: specific deficits in Alzheimer’s but not in Parkinson’s disease. J Gerontol 54A: M122–8 Franssen EH, Souren LEM, Torossian CL, Reisberg B (1999) Equilibrium and limb coordination in mild cognitive impairment and mild Alzheimer’s disease. J Am Geriatr Soc 47: 463–69 Fried LP, Kronmal RA, Newman AB, Bild DE, Mittelmark MB, Polak JF, Robbins JA, Gardin JM (1998) for the Cardiovascular Health Study Collaborative Research Group. Risk factors for five-years mortality in older adults. JAMA 279: 585–93 Grundman M, Corey-Bloom J, Jernigan T, Archibald S, Thal LJ (1996) Low body weight in Alzheimer’s disease is associated with mesial temporal cortex atrophy. Neurology 46: 1585–91 Jantti PO, Pyykko I, Liappala P (1995) Prognosis of falls among elderly nursing home residents. Aging Clin Exp Res 7: 23– 27 Katz S, Ford AB, Moskowitz RW (1963) The index of ADL: A standardized measure of biological and psychosocial function. JAMA 185: 914–19

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Larson EB, Shadlen MF, Wang L, McCormick WC, Bowen JD, Teri L, Kukul WA (2004) Survival after diagnosis of Alzheimer’s disease. Ann Intern Med 140(7): 501–09 Lauque S, Arnaud-Battandier F, Gillette S, Plaze JM, Andrieu S, Cantet C, Vellas B (2004) Improvement of weight and fat-free mass with oral supplementation in patients with Alzheimer’s disease at risk of malnutrition: a prospective randomized study. J Am Geriatr Soc 52(10): 1702–07 Lawton MP, Brody EM (1969) Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 9: 179–86 Mitchell SL, Kiely DK, Lipstitz LA (1997) The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med 10 157(3): 327–32 Nourhashemi F, Ousset PJ, Micas M (1997) Medical management and non-cognitive aspects of Alzheimer’s disease. Research and Practice in Alzheimer’s Disease 1: 233–48 Prettyman R (1998) Autonomic dysfunction in Alzheimer’s disease. CNS 1: 20–22 Robbins AS, Rubenstein LZ, Josephson KR, Schulman BL, Osterweil D, Fine G (1989) Predictors of falls among elderly people. Arch Int Med 149: 1628–33 Rubenstein LZ, Josephson KR, Wieland GD, English PA, Sayre JA, Kane RL (1984) Effectiveness of a geriatric evaluation unit. A randomised clinical trial. N Engl J Med 311: 1664– 70 Rubenstein LZ, Josephson KR, Robbins AS (1994) Falls in the nursing home. Ann Int Med 121: 442–51 Tinnetti ME, Speechley M, Ginter SF (1988) Risk factors for falls among elderly persons living in the community. N Engl J Med 319: 429–34 Trudeau SA, Biddle S, Volicer L (2003) Enhance ambulation and quality of life in advanced Alzheimer’s disease. J Am Geriatr Soc 51(3): 429–31 Vanhanen M, Kivipelto M, Koivisto K, Kuusisto J, Mykkanen L, Helkala EL, Haninnen T, Kerninen K, Kesaniemi YA, Laakson MP, Soininen H, Laakso M (2001) ApoE-epsilon4 is associated with weight loss in women with Alzheimer’s disease: a population-based study. Neurology 56: 655– 59 Vellas B, Guigoz Y, Garry PJ, Nourhashemi F, Bennahum D, Lauque S, Albarede JL (1999) The Mini Nutritional Assessment (MNA) and its use in grading the nutritional state of elderly patients. Nutrition 15: 116–22

Chapter 4

DRUGS THAT AFFECT COMPETENCE Conor O’Luanaigh and Brian Lawlor

1 Introduction The elderly (over 65s) constitute 11.4 percent of the Irish population yet receive 47% of all prescribed medicines on the GMS (General Medical Services); it is estimated that 32 items per year are prescribed per elderly person (GMS Prescribing Data, 2000). Similar figures are seen across Europe. This is thought to be due to the presence of multiple pathologies, the increasing range of available medicines, inappropriate prescribing, lack of medication review and an increased emphasis on preventative treatments in older people. Polypharmacy is the norm not the exception. A significant factor is repeat prescribing particularly where older patients are not reviewed regularly. Institutionalized patients tend to be on an even larger number of drugs (Denham and Denham, 1998). Self-medication with over the counter (OTC) medicines or continued treatment for a previous condition that has resolved is also common and can increase the risk of adverse events (Batty et al., 1997). Frequently many of these medications (both prescribed and OTC) are psychotropics or drugs that can have an effect on the central nervous system and can adversely affect functioning and decision making capacity. Drugs are one of the common risk factors for cognitive impairment and may be considered the most easily reversible trigger. While delirium is a multifactorial process it is estimated that medications alone may account for 12–39% of all cases. The risk of inducing cognitive impairment is particularly high in the frail elderly and those with a pre-existing dementia. Polypharmacy itself is an independent risk factor for causing drug induced confusion/delirium

(Martin et al., 2000). In addition to polypharmacy, altered pharmacokinetics and pharmacodynamics seen with aging, and associated co-morbid diseases have an additive or synergistic role with drugs in causing acute confusion/delirium or worsening cognitive impairment. This chapter will review the types and classes of drugs that can affect cognition and thus as a result alter the person’s competence or mental capacity to make decisions and function independently.

2 Competence/capacity There is no single definition of competence that is universally accepted. Competence is not only a legal norm and medical determination, it is also a societal construct designed either to empower or to restrict the rights of persons for particular purposes. It is not an all or one phenomenon and it can be lost and subsequently regained as can be the case when an individual develops a delirium and loses capacity but regains it on resolution of the delirium. The US President’s Commission (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research, 1982) recommended that persons be considered competent if • • •

they are capable of communicating pertinent information, they possess a set of values and goals, they have the ability to reason about choices.

The failure to identify decision options (where they exist) and the inability to understand the consequences

Chapter 4: C. O’Luanaigh and B. Lawlor

of those options have been found to be strong indicators of incapacity (Silberfield, 1994). However in understanding and assessing competency, it can be helpful also to further define it through

Fig. 1. Drugs that affect competence

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the different cognitive functions that determine competence. This can allow us therefore to see how different drug groups can affect areas of cognition and thus competence (see Fig. 1). The ability to understand and

Drugs that affect competence

Table 1 Drugs that adversely effect cognition

Putative mechanism

• Tricyclic antidepressants, – amitriptyline, imipramine

Anticholinergic action affects attention and memory.

• Antiparkinsonian agents, – procyclidine, benztropine, etc.

as above

• 1st generation antihistamines, – chlorpheniramine, diphenyhydramine etc.

as above

• Antispasmodics – hyoscine, oxybutynin

as above

• Antinauseants such as scopolamine

as above

• Antiarrhythmics such as disopyramide

as above

• Benzodiazepines

CNS depressant affects arousal, attention, reaction time and episodic memory

• Opiates, -morphine, codeine

CNS depressant, affects arousal inhibition of neuronal Na+ K+ATPas. Codeine has anticholinergic action.

• Quinolone antibiotics

NMDA agonists, GABA-A antagonist

• Lithium, digoxin

Drug toxicity due to reduced renal clearance. Lithium affects attentional processing

• Alcohol

CNS depressant- intoxication causing sedation and attentional difficulties. Chronic use can cause an amnestic syndrome affecting episodic memory as well as impairing executive function and judgement.

• Corticosteroids

Enhancement of NMDA receptor activity, can affect declarative memory

• Diuretics

Dehydration with electrolyte disturbances possibly impairing attention.

• Antipsychotics

Frontal-striatal dopamine blockade affecting attention and executive function

be aware of situations and choices is related to executive functioning and memory. The ability to appreciate future implications of decisions or choices relates to executive functioning. Disordered attentional processing and receptive and expressive dysphasia preclude simple choice. Therefore when assessing for competence it is vital to assess the cognitive domains of attention, memory, language and frontal/executive function. Different drugs can affect these various domains and thus impair competence, for example anticholinergics can affect both memory and attention, while antipsychotics can affect frontal/executive function.

3 Medications associated with adverse effects on cognition Many groups of drugs can have effects on memory and cause cognitive impairment. Table 1 shows some of the commoner types and the mechanisms of action. As well as prescribed drugs, over the counter, complementary/alternative, or illicit products can all have an effect on cognition which can impair competence. The most common drugs that can affect cognition include anticholinergic medications, benzodiazepines and narcotics. Other medications in toxic doses can also cause cognitive impairment.

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In this section, we review the more common classes of drugs that can adversely affect different areas of cognition. However it is important to make the following generalization before describing each class of drugs in detail: Differences between effects of different drugs may be caused by several variables such as dose, route of administration and bioavailability of the drug. For example a high dose versus a low dose of alcohol may have different effects on cognition (Zuccala et al., 2001).

3.1 Anticholinergic drugs The studies of Deutsch (1971) have documented a clear role for cholinergic transmission in memory and attention. Clinical studies with the central muscarinic antagonist, scopolamine, provide evidence for the involvement of the cholinergic system in memory and learning (Drachman and Leavitt, 1974). These have shown that an antagonist like scopolamine can transiently impair performance on a variety of memory tasks, including episodic memory and retrieval and access to semantic memory. Scopolamine affects the learning of new information; immediate recall on digit span is not affected but the storage of new memories is disrupted as shown by testing on “supraspan” sequences (Drachman and Leavitt, 1974). Most studies suggest that scopolamine can interfere with the acquisition and storage of new information (Ghoneim and Mewaldt, 1975; Peterson, 1977; Ghoneim and Mewaldt, 1977; Safer and Allen, 1971). It also appears that anticholinergic agents can disrupt the retrieval process from knowledge memory (Drachman and Leavitt 1974; Wolkowitz et al., 1985). These deficits can be partially reversed by the administration of physostigmine, a cholinesterase inhibitor, suggesting the effects of scopolamine on memory are specific to the cholinergic system. Anticholinergic activity is also associated with the occurrence and severity of delirium, and recent studies by Flacker et al. (1998), have shown an association between higher serum anticholinergic activity and a greater severity in delirium. Quite apart

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from specific anticholinergic medications such as procyclidine or trihexyphenidyl many other medications have anticholinergic properties that can cause impaired cognition. Tricyclic antidepressants have a significant anticholinergic effect and are well known causes of delirium. However quite apart from delirium, tricyclics such as amitriptyline can have an effect on cognition so as to affect competence to drive. Studies by Ramaekers (2003) and Veldhuijzen (2006) have shown that amitriptyline and imipramine can cause driving impairment for up to one to two weeks after initiation of treatment at which time driving performance returned to normal. Many of the older antihistamines all have potent anticholinergic effects and can cause cognitive impairment, as can painkillers such as pethidine which is converted to an anticholinergic metabolite which can cross the blood brain barrier and affect cognition.

3.2 Benzodiazepines The cognitive effects of acute benzodiazepine administration have been well documented in humans (Lister, 1985). The best-documented cognitive effect of benzodiazepines has been anterograde amnesia (Wolkowitz et al., 1987). The time of onset and duration of this effect varies according to the benzodiazepine used, but the effect can last more than 6 hours. Although they disrupt the encoding and consolidating phase of learning, benzodiazepines have not been found to affect immediate recall and access to previously acquired information. Sedative effects also accompany the amnestic effects of these drugs. These sedative effects can obviously impact on the perceptual processes of the patient and interfere with the ability of the patient to pay attention to a stimulus, thus directly affecting the person’s competence. The pattern of memory impairment produced by benzodiazepines is different from that produced by anticholinergic agents. In contrast to the anticholinergic agents, benzodiazepines do not interfere with previously learned information (Peterson and


Ghoneim, 1980). Benzodiazepines have more selective disruptive effect on episodic memory, so the encoding of new memories is especially impaired. This type of memory impairment most closely resembles that of the alcoholic amnestic syndrome. Busto et al. (2001) found that 53% of seniors had used a sedative hypnotic in the past year. Seventeen percent used over the counter sedatives while 83% were using prescription medications. These findings show that benzodiazepine use is quite widespread amongst the elderly and thus can be a common cause of impaired cognition. Confusion and cognitive impairment secondary to benzodiazepines is most commonly seen with medium to long acting benzodiazepines such as clonazepam and diazepam. One must also be mindful that abrupt withdrawal of such drugs can also trigger a delirium that would impair competence

3.3 Alcohol Community based studies in older people have estimated the prevalence of alcohol misuse or dependence as 2–4%, (Adams and Cox, 1995) with much higher rates of 17% (men) and 7% (women) when less stringent criteria such as excessive alcohol consumption are used (UK National Digital Archive of Datasets, 1994). For hospital based studies, the same difficulties abound as the definitions for alcohol use disorders are not clearly specified in many studies. In general, however, the prevalence for elderly inpatients is higher than for elderly people in the community, with estimates of 14% for patients in emergency departments, 18% for medical inpatients, and 23–44% for psychiatric inpatients (Goldstein et al., 1996). Among elderly people, sociodemographic factors associated with alcohol use disorders include being male (Saunders et al., 1991; Iliffe et al., 1991) socially isolated (Bristow and Clare, 1992) single, (Bristow and Clare, 1992; Ganry et al., 2000) and separated or divorced (Ekerdt et al., 1989). Many studies have documented cognitive impairment in response to the consumption of alcoholcontaining beverages (Parsons et al., 1987). Many of these studies suggest that alcohol when given acutely,

primarily affects the acquisition of new information rather than the retrieval of previously learned material (Rosen and Lee, 1976; Birnbaum and Parker, 1977; Hashtroudi et al., 1983; Williams and Rundell, 1984). If information is presented to the subjects while they are in an intoxicated state, their ability to recall a series of events is markedly impaired, regardless of whether retrieval takes place when subjects are sober or intoxicated. Subjects may show alcohol-induced impairments in acquisition of new information for several reasons. Intoxicated subjects may not perceive the incoming stimuli as well as sober subjects. Furthermore, intoxicated subjects may not attend to the stimuli, or may not process and encode information efficiently. Alcohol may also produce disruption in attention. Since learning impairment have been associated with decreases in arousal and alcohol possesses CNS depressant properties, it is possible that the effect of ethanol on cognition could be mediated in part by its sedative effects. As well as the deleterious effects of alcohol intoxication on cognition and capacity, acute alcohol withdrawal can result in a withdrawal state, which obviously has a huge impact on patient’s capacity. Quite apart from the acute effects of alcohol (intoxication and sudden withdrawal), chronic abuse of alcohol can lead to an amnestic syndrome known as Korsakoff ’s syndrome. The main area of memory affected is the ability to learn new information. Usually, intelligence and memory for past events is relatively unaffected, so that an individual may remember what occurred 20 years previously, but is unable to remember what occurred 20 minutes ago. This memory defect is referred to as anterograde amnesia. In essence these patients cannot consolidate or remember recent events and thus are prone to confabulation.

3.4 Antipsychotics Antipsychotic drugs can be of modest benefit in the treatment of certain behavioural problems in dementia although their use can be limited due to increased risk for cerebrovascular events and increased mor-

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tality rates (Schneider et al., 2006). In patients with schizophrenia, treatment with atypical antipsychotics has shown benefits in cognition in particular in the areas of attention and executive function (Meltzer and McGurk, 1999). However use of antipsychotics in patients with dementia is thought to impair cognition in these patients. Certain antipsychotics such as chlorpromazine have a significant anticholinergic effect and as mentioned already this can have an effect on attention and memory. Other antipsychotics such as haloperidol, (which has little or no anticholinergic effect) has been shown by Devenand et al to also cause a decline in cognitive functioning in patients with Alzheimer’s disease (Devenand et al., 1989). Cross sectional studies have also shown that patients with dementia who take antipsychotics have worse cognitive function than those who do not (Brown et al., 1993). More recently a 2 year longitudinal prospective study by McShane et al. (McShane et al., 1997) which looked at how typical antipsychotics affect cognition in dementia, showed that the mean decline in cognitive score in those who took antipsychotics was twice that of patients who did not. The antipsychotic medications that were used in this study were, haloperidol, chlorpromazine, thioridazine and promazine. In the most recent study which looked at atypical antipsychotics and cognition, Ballard et al carried out a randomized double blind placebo controlled trial in which they compared the atypical antipsychotic – quetiapine with rivastigmine and a placebo (Ballard et al., 2005). They found significant greater cognitive decline in the group taking quetiapine compared to placebo. In a recent meta-analysis looking at the efficacy and adverse effects of atypical antipsychotics for dementia (Schneider et al., 2006), it was found that cognitive scores worsened for all drugs included in the review (olanzapine, quetiapine, risperidone and aripiprazole). The exact areas of cognition that are impaired as a result of antipsychotics are not fully established but thought to be related to impaired attention and possibly increased sedation in the case of quetiapine. Therefore prudent use of antipsychotics in patients with dementia is advised paying par-

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ticular attention to avoid use of antipsychotics with a high anticholinergic effect.

4 Medications with potential beneficial effects on cognition Having looked at the various drugs that can adversely affect cognition we are now going to look at drugs that may have beneficial effects on cognition and thus improve or help maintain capacity.

4.1 New generation antidepressants As mentioned earlier certain older tricyclic antidepressants can have a significant effect on memory due to their potent anticholinergic effects. This has led to increased prescribing of SSRI’s in the elderly. However what of the potential beneficial effects of SSRI’s on cognition and thus competence? Previous studies have shown that the serotonergic system is affected in Alzheimer’s disease (Azmitia, 1978). Not only is brain serotonin content and uptake reduced, but serotonergic cell density in the raphe nuclei is also reduced (Arai et al., 1984; Carlsson et al., 1980; Sparks et al., 1986; Mann and Yates, 1983; Yamamoto and Hirano, 1985). However no studies to date have demonstrated a clear direct beneficial effect on cognition with use of SSRI’s in patients with Alzheimer’s disease. Of note however there have been some comparison studies of sertraline and nortriptyline in the treatment of major depression in the elderly (Finkel et al., 1999; Bondareff et al., 2000). These have shown some cognitive benefits in the groups taking sertraline as opposed to the group taking nortriptyline, independent of the antidepressant effects of the individual drugs. The exact mechanisms as to why this might be the case has yet to be discovered and more research is required to elucidate this. A more recent study looked at reboxetine and its effects on cognitive functioning in depressed patients as compared to paroxetine and placebo. Reboxetine is a selective


noradrenaline reuptake inhibitor with proven efficacy in depression. In this double blind placebo and active treatment controlled study, it was found that the group taking reboxetine had significantly improved cognitive scores in the domain of attention compared to paroxetine and placebo (Ferguson et al., 2003).

4.2 Cholinesterase inhibitors Since the introduction of the first cholinesterase inhibitor in 1997, most clinicians and probably most patients would consider the cholinergic drugs, donepezil, galantamine and rivastigmine, to be the first line pharmacotherapy for mild to moderate Alzheimer’s disease. The drugs have slightly different pharmacological properties, but they all work by inhibiting the breakdown of acetylcholine, by blocking the enzyme acetylcholinesterase. Many studies have been carried out on these drugs and they have consistently been shown to be effective and well tolerated (Gauthier et al., 2002; Boada-Rovira et al., 2004). More recently a Cochrane systematic review by Birks et al. (2006) has been carried out in which they reviewed all unconfounded, blinded, randomized trials in which treatment of a cholinesterase inhibitor was compared with placebo. In this review he found that treatment for periods of 6 months and one year with one of the cholinesterase inhibitors at the recommended dose produced improvements in cognitive function, on average – 2.7 points (97% CI –3.0 to –2.3) in the midrange of the ADAS-Cog scale. No significant differences in efficacy were found between the different cholinesterase inhibitors. In a nutshell this review along with all the studies carried out previously, consistently show that these drugs can have a mild but significant beneficial effect on cognition in people with Alzheimer’s disease. This is all the more important in a clinical setting where maintaining or improving cognition even if just for a relatively short period can help maintain the person’s ability to make decisions about their wellbeing and other issues.

4.3 Dopamine agonists Human postmortem and animal experimental studies have all suggested a decline of the cerebral dopaminergic neuronal system with age (de Keyser et al., 1990a,b; Misra et al., 1980). In more recent years studies have looked at the effect of age on dopamine receptors in normal human brain measured by positron emission tomography (PET scans), and these have also confirmed a decrease in D2 dopamine receptor binding as a consequence of normal ageing in parallel with the decline of the presynaptic nigrostriatal dopaminergic neuronal system (Antonini et al., 1993). Further studies have been carried out looking at the possible association between decline in brain dopamine activity with age and cognitive impairment. One such study by Volkow et al. (1998) concluded that age-related decreases in brain dopamine activity contributes to impaired performance on tasks that involve frontal brain regions as well as being associated with a decline in motor performance (Volkow et al., 1998). It suggested too that interventions that enhance dopamine activity may improve performance and quality of life in elderly. Following on from these studies trials have looked at the efficacy of dopamine agonists in relation to improved cognition. The dopamine agonist piribedil has been tested against placebo in healthy elderly volunteers in one randomized double blind trial (Peretti et al., 2004). The group receiving piribedil showed a beneficial effect on the acquisition of a problem-solving routine, and as such it was concluded that piribedil is likely to enhance cognitive-skill learning in healthy older adults. In another interesting study by Dindagur and Sivaramakrishnan (2001), they investigated whether piribedil improves cognitive function in patients with mild cognitive impairment. Again this study found that the group taking piribedil had significant increases in MMSE scores. In patients who have cognitive decline as a result of Parkinson’s disease, some short-term improvement in many cognitive tasks is obtained with use of dopamine agonists (Kulisevsky et al., 2000).

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Although, it appears too from another study looking at dopamine agonists in patients with Parkinson’s disease that the agonists influence cognition according to the receptors which they act upon (Brusa et al., 2005). Specifically the D2/D3 agonist pramiprexole appeared to significantly worsen verbal fluency, short-term memory and attentional-executive functions in comparison to l-dopa and pergolide both of which stimulate D1 and D2 receptors. In summary, age related dopamine decline plays a role in cognitive impairment in the elderly, however how significant this is in patients with Alzheimer’s dementia is unclear. Further studies testing tolerability and efficacy in patients with Alzheimer’s, as an adjunctive treatment as are warranted. However in patients with Parkinson’s disease with cognitive impairment and possibly also Parkinson’s dementia one could consider dopamine agonist treatment as an adjunctive treatment for cognition to rivastigmine, which is already approved for use in Parkinson’s disease dementia in the EU.

that can potentially beneficially affect cognition and as a consequence help to maintain competence and function.

Key points • •

• •

•

•

5 Conclusions • Assessing for competence or capacity is an important role of the physician in the management of patients with dementia. Capacity involves a number of cognitive domains, all of which have to be assessed to determine competence. The frail elderly and people with a pre-existing dementia are especially vulnerable to drug induced cognitive impairment which will adversely affect their competence and abilities. In this chapter we have looked at some of the more common drug classes that can have an effect on cognition and the different mechanisms that underpin their effects. Altered pharmacodynamics and pharmacokinetics as well as polypharmacy all increase the likelihood that cognitive impairments secondary to drugs can occur. As can be seen from box 1, a wide variety of drugs can affect cognition and therefore it is imperative for doctors to have a low threshold for suspecting drug-induced cognitive impairments. However it is equally important to be aware of drugs

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•

Polypharmacy plays a significant role in impairing cognition and function in older people. Cognitive determinants of competence include memory, attention, executive function and language. Different drug classes can alter cognition and competence in different ways. Anticholinergic drugs impair episodic memory as well as impairing retrieval and access to semantic memory. Benzodiazepines impair attentional processes through their sedative effects, but also impair encoding of new memories. They do not impair previously learned information. Always consider alcohol as a potential cause of cognitive impairment either through its acute or chronic effects. Exercise caution with regards to the use of antipsychotics in patients with dementia as these can worsen cognition. Cholinesterase inhibitors can stabilize cognition, function and maintain competence in Alzheimer’s disease and Parkinson’s disease dementia.

References Adams WL, Cox NS (1995) Epidemiology of problem drinking among elderly people. Int J Addict 30: 1693–716 Antonini A, Leenders KL, Reist H et al. (1993) Effect of age on D2 dopamine receptors in normal human brain measured by PET and 11C-raclopride. Arch Neurol 50(5): 474–80 Arai H, Kosaka K, Iizuka R (1984) Changes of biogenic amines and their metabolites in postmortem brains from patients with Alzheimer-type dementia. J Neurochem 43: 388–93 Azmitia EC (1978) Chemical pathways in the brain. In: (Iverson L, Snyder SH, eds) Handbook of psychopharmacology. Plenum Press, New York


Ballard C, Margallo-Lana M et al. (2005) Quetiapine and rivastigmine and cognitive decline in Alzheimer’s disease: randomised double blind placebo controlled trial. BMJ 330: 874 Batty GM, Obone CA et al. (1997) The use of over-the-counter medication by elderly medical in-patients. Postgrad Med J 73: 720–22 Birks J (2006) Cholinesterase inhibitors for Alzheimer’s disease. Cochrane Database Syst Rev 25(1): CD005593 Birnbaum IM, Parker ES (1977) Alcohol and human memory, Lawrence Erlbaum Assoc, Hillsdale, NJ Boada-Rovira M, Brodaty H, Cras P et al. (2004) Efficacy and safety of donepezil in patients with Alzheimer’s disease: results of a global multinational, clinical experience study. Drugs Aging 21(1): 43–53 Bondareff W, Alpert M, Friedhoff AJ et al. (2000) Comparison of sertraline and nortriptyline in the treatment of major depressive disorder in later life. Am J Psychiatry 157(5): 729–36 Bristow MF, Clare AW (1992) Prevalence and characteristics of at risk drinkers among elderly acute medical inpatients. Br J Addict 87: 291–94 Brown JW, Chobor A, Zinn F (1993) Dementia testing in the elderly. J Nerv Ment Dis 181: 695–98 Brusa L, Tiraboschi P, Koch G et al. (2005) Pergolide effect on cognitive functions in early–mild Parkinson’s disease. J Neural Transm 112(2): 231–37 Busto UE, Sproule BA, Knight K et al. (2001) Use of prescription and non-prescription hypnotics in a Canadian elderly population. Can J Clin Pharmacol 82: 13–21 Carlsson A, Adolfsson R, Aquilonius SM et al. (1980) Biogenic amines in human brain in normal aging, senile dementia, and chronic alcoholism. Adv Biochem Phsych Pharmacol 23: 295–304 de Keyser J, de Backer JP et al. (1990a) The effect of aging on the D1 receptors in human frontal cortex. Brain Res 528(2): 308–10 de Keyser J, Ebinger G, Vaugelin G (1990b) Age-related changes in the human nigrostriatal dopaminergic system. Ann Neurol 27(2): 157–61 Denham MJ, Barnett NL (1998) Drug therapy and the older person. Drug Safety 19: 243–50 Deutsch JA (1971) The cholinergic synapse and the site of memory. Science 174: 783–94 Devenand DP, Sackheim HA et al. (1989) A pilot study of haloperidol treatment of psychosis and behavioural disturbance in Alzheimer’s disease. Arch Neurol 46(8): 854–57 Dindagur N, Sivaramakrishnan J (2001) Randomized study of dopamine receptor agonist piribedil in the treatment of mild cognitive impairment. Am J Psychiatry 158: 1517– 19

Drachman DA Leavitt J (1974) Human memory and the cholinergic system. Arch Neurol 30: 113–21 Ekerdt DJ, deLabry LO, Glynn RJ, Davis R (1989) Change in drinking behaviours with retirement: findings from the normative ageing study. J Stud Alcohol 50: 347–53 Ferguson JM, Wesnes KA, Schwartz GE (2003) Reboxetine versus paroxetine versus placebo: effects on cognitive functioning in depressed patients. Int Clin Psychopharmacol 18(1): 9–14 Finkel SI, Richter EM, Clary CM (1999) Comparative efficacy and safety of sertraline versus nortriptyline in major depression in patients 70 and older. Int Psychogeriatr 11(1): 85–89 Flacker JM, Cummings V, Mach JR Jr et al. (1998) The association of serum anticholinergic activity with delirium in elderly medical patients. Am J Geriatr Psychiatry 6(1): 31– 41 Furui T, Tanaka I, Wata K (1990) Alterations in Na+ K+ ATPase activity and beta-endorphin content in acute ischemic brain with and without naloxone treatment. J Neurosurg 72: 458–62 Ganry O, Joly J, Queval MP, Dubreuil A (2000) Prevalence of alcohol problems among elderly patients in a university hospital. Addiction 95: 107–13 Gauthier S, Feldman H et al. (2002) Functional, cognitive and behavioural effects of donepezil in patients with moderate Alzheimer’s disease. Curr Med Res Opin 18(6): 347–54 Ghoneim MM, Mewaldt SP (1975) Effects of diazepam and scopolamine on storage, retrieval, and organizational processes in memory. Psychopharmacology 44: 257–62 Ghoneim MM, Mewaldt SP (1977) Studies on human memory: The interactions of diazepam, scopolamine, and physostigmine. Psychopharmacology 52: 1–6 GMS Prescribing Data, Department of Health (2000) Goldstein MZ, Pataki A, Webb MT (1996) Alcoholism among elderly persons. Psychiatr Serv 47: 941–3 Hashtroudi S, Parker ES, DeLisi LE, Wyatt RJ (1983) On Elaboration and alochol. J Verb Learn Verb Behav 22: 164–73 Iliffe S, Haines A, Booroff A, Goldenberg E, Morgan P, Gallivan S (1991) Alcohol consumption by elderly people: a general practice survey. Age Ageing 20: 120–23 Kulisevsky J, Garcia-Sanchez C, Berthier Ml et al. (2000) Chronic effects of dopaminergic replacement on cognitive function in Parkinson’s disease: a 2-year follow up study of previously untreated patients. Mov Disord 15(4): 613– 26 Lister RB (1985) The amnesic action of benzodiazepines in man. Neurosci Biobehav Rev 9: 87–94 Mann DMA, Yates PO (1983) Serotonin nerve cells in Alzheimer’s disease. J Neurol Neurosurg Psychiatry 46: 96

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Martin NJ, Stones MJ et al. (2000) Development of delirium: a prospective cohort study in a community hospital. Int Psychogeriatr 12: 117–27 McShane R, Keene J, Gedling K et al. (1997) Do neuroleptic drugs hasten cognitive decline in dementia? Prospective study with necropsy follow up. BMJ 314: 266 Meltzer HY, McGurk SR (1999) The effects of clozapine, risperidone and olanzapine on cognitive function in schizophrenia. Schizophr Bull 25(2): 233–55 Misra CH, Shelet HS et al. (1980) Effect of age on adrenergic and dopaminergic receptor binding in rat brain. Life Sci 27(6): 521–26 Parsons OA, Butters N, Nathan P (1987) Neuropsychology of alcoholism: Implications for diagnosis and treatment. Guildford Press, New York Peretti CS, Gierski F, Harrois S (2004) Cognitive skill learning in healthy older adults after 2 months of double-blind treatment with piribedil. Psychopharmacology (Berl) 176(2): 175–81 Peterson RC (1977) Scopolamine induced learning failures in man. Psychopharmacology 52: 283–89 Peterson RC, Ghoneim MM (1980) Diazepam and human memory: Influence on acquisition, retrieval, and state dependent learning. Proc Neuro-Psycopharmacol 4: 81– 89 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research (1982) U.S. Government Printing Office Ramaekers JG (2003) Antidepressants and driver impairment: empirical evidence from a Standard On-the-Road Test. J Clin Psychiatry 64(1): 20–29 Rosen LJ, Lee CL (1976) Acute and chronic effects of alcoholuse on organizational processes in memory. J Abnorm Psychol 85: 309–17 Safer DJ, Allen RP (1971) The central effects of scopolamine in man. Biol Psychiatry 3: 347–55

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Saunders PA, Copeland JR, Dewey ME et al. (1991) Heavy drinking as a risk factor for depression and dementia in elderly men. Findings from the Liverpool Longitudinal Community Study. Br J Psychiatry 159: 213–16 Schneider LS, Dagerman K, Insel PS (2006) Efficacy and adverse effects of atypical antipsychotics for dementia: metaanalysis of randomized, placebo-controlled trials. Am J Geriatr Psychiatry 14: 191–210 Sparks DL, Markesbury WR, Slevin JT (1986) Alzheimer’s disease: monoamines and spiperone binding reduced in nucleus basalis. Ann Neurol 19: 602–04 UK National Digital Archive of Datasets (1994) General household survey, UK. http://ndad.ulcc.ac.uk/CRDA/28/DS/1/ detail.html (accessed 9 September 2003). Veldhuijzen DS, van Wijck AJ, Vester J et al. (2006) Acute and subchronic effects of amitriptyline 25 mg on actual driving in chronic neuropathic pain patients. J Psychopharmacol 20(6): 782–8 Volkow ND, Gur RC, Wang GJ et al. (1998) Association between decline in brain dopamine activity with age and cognitive and motor impairment in healthy individuals. Am J Psychiatry 155(3): 344–49 Williams Hl, Rundell OH (1984) Effect of alcohol on recall and recognition as functions of processing levels. J Stud Alcohol 45: 10–15 Wolkowitz OM, Tinklenberg JR et al. (1985) A psychopharmacological perspective of cognitive functions: II. Specific pharmacological agents. Neuropsychobiology 14: 133–56 Wolkowitz Om, Weingartner H et al. (1987) Diazepam induced amnesia. Am J Psychiatry 144: 25–29 Yamamoto T, Hirano A (1985) Nucleus raphe dorsalis in Alzheimer’s disease: Neurofibrillary tangles and loss of large neurons. Ann Neurol 17: 573–77 Zuccala G, Onder G, Pedone E et al. (2001) Dose-related impact of alcohol consumption on cognitive function in advanced age: results of a multicenter survey. Alcohol Clin Exp Res 25: 1743–48

Chapter 5

WHO DECIDES WHO DECIDES? ETHICAL PERSPECTIVES ON CAPACITY AND DECISION-MAKING Deborah Bowman

“Illness is not something a person has; it’s another way of being” Jonathan Miller “The Body in Question”

1 Introduction Capacity1 is at the heart of ethical decision making in healthcare. For those who subscribe to a principled approach to moral reasoning (Gillon, 1985; Gillon and Lloyd, 1993; Beauchamp and Childress, 1994), autonomy is often said to be pre-eminent amongst the four principles of medical ethics2, or at least “first amongst equals” (Gillon, 2003). For those who prefer methods of ethical analysis other than the influential “four principles” approach, there remains a fundamental assumption that self-determination is afforded moral value and priority (Campbell, 2003; Harris, 2003; Cowley, 2005). To deny a capacitous person the freedom to make decisions about his or her own treatment and healthcare is fundamentally unethical 1

2

I use the term “capacity” as it has become the commonest term in the UK for describing a person’s ability to make decisions about their care and has been incorporated into legislation, namely the Mental Capacity Act 2005. Readers may also be familiar with the synonymous term “competence”. Furthermore, I am concerned with the capacity to make healthcare decisions. In the UK, capacity is also variously assessed for diverse non-medical purposes including financial decisions, probate and contractual law, electoral rights and personal relationships. The four principles are autonomy, beneficence, non-maleficence and justice. The “four principles” approach is a model of ethical analysis that has been remarkably influential, if not universally embraced amongst ethicists.

whether one attributes the moral precept for such a conclusion to autonomy or virtuous practice or respect for others. Conversely, where a person lacks the capacity to make decisions, healthcare professionals have a responsibility to protect his or her interests3. It is remarkably easy to acknowledge the sense of the preceding statements; however, they belie the moral complexity of assessing capacity implying a satisfying but artificial binary certainty in which ethical practice constitutes an informed choice by the professional between affording his patient full entitlement to make his or her own decisions or acts without reference to the patient’s preferences because he or she has not met the demands of the “test” of capacity. Such moral simplicity is seductive, perhaps particularly to the busy and overworked clinician, but it is a simplicity that is illusory because it disregards three important aspects of what it means to assess capacity ethically. First, capacity is not an “all or nothing” construct but a fluctuating concept. In practice, patients may 3

Although, of course, embedded in the almost casual assertion about protection of interests are multiple and complex value and moral judgements, e.g. are “interests” biomedical, social, psychological? What qualifies a professional trained in a particular discipline to speculate about a stranger’s social preferences and therefore “interests”? If biomedical and broader interests collide, who should decide what best constitutes protection of interests?

Chapter 5: D. Bowman

be somewhere along a continuum of capacity and this may vary enormously depending on external factors. Ethical practice therefore demands attention to those influential variables that may diminish, alter or enhance a patient’s capacity. If, and I assume most readers agree, there is moral value in self-determination, it is ethical to maximise the chances that patients have the opportunity to express their preferences. Indeed, it is argued that it is not merely “nice” to aspire to be alert to variables that affect a patient’s capacity, but it is a duty for healthcare professionals to be so alert. Ways in which healthcare professionals might influence a patient’s capacity are discussed post. Second, if capacity is not something that patients either do or do not have then it is likely that many patients whom professionals meet in their work will be in a grey hinterland where they may sometimes or even only occasionally be capacitous to decide about some things. The healthcare professional must then engage with the moral challenge of those patients who hover uncertainly in an ethico-legal hinterland in which capacity may be fleetingly, perhaps even tantalisingly, present or may be just out of grasp. For professionals who work with people who have dementia this group of people may form the majority of their case load, so to focus solely on assessing capacity as the moral endeavour at hand, may well be to focus on the wrong moral problem. The more apposite moral challenge is to practise ethically in respect of those who may only be sometimes, rarely or never capacitous. Finally, it is too readily assumed that autonomy, or perhaps more accurately a particularly narrow interpretation of autonomy (Clement, 1998; Agich, 2003), is the natural ethical antecedent of capacity thereby necessarily elevating the assessment of capacity to disproportionate status. If, however, one considers the moral foundations of decision-making more imaginatively and is alert to other ethical models such as virtue ethics (Macintyre, 1985; Toon, 2002; Gardiner, 2003) in which respect is embedded (Campbell, 2003), feminist and communitarian ethics in which professional ethics are reinterpreted to focus on equality and individuality (Larabee, 1993; Tong, 1997; Clement, 1998) or the ethics of care (Nod-

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dings, 2003) the possibilities of interacting ethically with the person of impaired or reduced cognition are much greater, and it is argued, more relevant than a quasi–fetishistic preoccupation with attaining capacitous status. This chapter then focuses on three under-explored but potentially valuable dimensions to facilitating ethical decision-making with patients in whom a dementing process has begun, namely (i) the power of professionals to influence capacity and the concomitant responsibility to enhance rather than diminish capacity; (ii) the value of scrutinising the ethical basis of capacity and decision-making to extend the analysis beyond the restricting boundaries of conventional interpretations of autonomy; and (iii) the alternatives to capacity as the sole means of facilitating self-determination.

2 An ethical gift: the power and responsibility of the professional in facilitating capacity Although one of the central tenets of this chapter is that to concentrate exclusively on “capacity” is to focus on the wrong moral challenge when aspiring to ethical practice, it is unsurprising that the assessment of capacity is such an important clinical skill. The first ethical question therefore might be to consider what the “virtuous” healthcare professional(s) and team(s) would have to ensure to maximise ethical practice (Toon, 2002; 2007). What is the mixture of phronesis or “practical wisdom” and qualities to which the professional should aspire in assessing capacity? Capacity is a legal construct4 that determines whether a person is afforded rights, choices and freedoms by healthcare professionals. Therefore, the

4

Although capacity will rarely, if ever, be assessed without clinical input, it remains a legal rather than a medical concept, i.e., in the UK its definition is drawn from the common law per J. Thorpe in Re: C (Adult: Refusal of Treatment) The Mental Capacity Act 2005 has largely adopted the common law test for assessing capacity save for the confusing “belief ” criterion.

Who decides who decides? Ethical perspectives on capacity and decision-making

process of assessing5 whether or not someone is capacitous equates to the bestowal or denial of legal privileges. As such, the professional engaged in assessing a person’s capacity should reflect on what it might mean to be “virtuous” in this context. Indeed, to borrow from two writers who have offered the somewhat old-fashioned term “conscience” as an alternative to the sometimes limiting language of medical ethics (Hughes and Baldwin, 2006), what might the “conscience” of healthcare professionals charged with helping patients with dementia make decisions demand? Respect for persons, honesty, beneficence and equity are likely to be uncontroversial precepts by which to practise but what does that mean in relation to assessing capacity? First, no professional should engage in an assessment of a patient’s capacity without understanding the relevant legal framework in his or her jurisdiction (British Medical Association and The Law Society, 1995). Indeed, so ambiguous is the language of assessing capacity, that some have sought to distinguish between separate legal terminology and “bioethical” terminology as a means of differentiating lawful practice from ethical practice (Schneider and Bramstedt, 2006). Therefore a basic but fundamental stage in “virtuous practice” is to ensure that all members of the team are talking about the same task when discussing or engaging in assessments of capacity. If, as is likely to be the case when working with people of impaired cognition, lucidity is variable and expressions of preference confusing, it is essential to maximise the chances of everyone in the team contributing to an optimal assessment of capacity. Given the importance of the task and the consequences of a determination of capacity for a person’s self-determination, it should be a common goal for all staff to facilitate rather than impede capacity. For if assessment of capacity is not a single, irrevocable and static judgement, each member of the team may 5

Although it is important to note that in the UK, adults are presumed to be capacitous and an assessment should only be conducted where there is legitimate doubt about a patient’s decision-making capacity.

bring a piece to the self-determination jigsaw. What does this mean in practice? First, professionals must be wary of relying too much on previous assessments of capacity and regular review should be embedded in the system. There should be overt acknowledgement that the way in which a professional asks questions or gives information can enhance or diminish a patient’s capacity. The location, timing, physical and emotional variables can all inform the assessment of capacity and should be addressed so far as possible to minimise the potential effects of, for example, unfamiliar surroundings, pain, anxiety and tiredness. Capacity is not simply a free floating legal state: it assumes meaning and purpose in relation to specific decisions. As such, the assessment of capacity must be carried out with reference to the particular decision to be made e.g. with reference to the specific intervention or treatment proposed. The professional carrying out the assessment should establish to what end a capacitous decision is being sought. Similarly, professional(s) asking for assessments of capacity should clarify exactly what is being asked of the patient and why. Medicine is naturally concerned with diagnoses and categorisation, yet in the assessment of capacity6 pre-existing diagnoses may inhibit ethical practice. The assessment of capacity should be unrelated to any pre-existing diagnoses, including those of cognitive impairment or disorder (EDCON, 2006). The fact that a person has been diagnosed with a particular disorder does not inevitably mean that an assessment of capacity should be made. The assessment of capacity is concerned with a person’s ability to decide and not with diagnostic labels. Patients may be uncooperative when a professional seeks to conduct an assessment of capacity, but refusal to cooperate does not mean that the patient can be assumed to be incapacitous. Therefore professionals may need to be imaginative and patient in attempts to engage patients in capacity assessments. 6

It is not only in the assessment of capacity that a pre-existing diagnosis of dementia that may be inhibited, but the treatment offered to patients (Gallagher and Clark, 2002).

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For example, close attention to influencing factors such as the way in which explanations are given, a professional’s manner and demeanour and the surrounding environment can all enhance a patient’s potential for capacity. The virtuous professional (Toon, 2006) therefore will seek to maximise a patient’s ability to understand information by explaining it in clear and simple language and being as reassuring as possible. Options that can be explored to maximise a patient’s understanding include treating an underlying condition that is inhibiting decision-making, writing down information, drawing diagrams, using educational models, videos and audiotapes, using translators, letting the patient choose a friend or relative to be present7, finding a private place for the consultation, remaining alert to confidentiality (Hughes et al., 2002) and, where appropriate, considering the use of a validated, structured tool such as the MacArthur Competence Assessment Tool for Treatment8 (Grisso et al., 1997; Grisso and Appelbaum, 1998) which research has recently shown to have validity in assessing the capacity of older patients in the UK (Eastman and Starling, 2006). Finally, healthcare professionals may have an important role in maximising capacity by considering the place of advanced statements. Whilst advance statements have variable legal status in differing jurisdictions, there are common challenges attendant upon expressing preferences in anticipation of future loss of capacity, ranging from philosophical questions about whether connectedness is intrinsic to the meaningful discharge of prospective autonomy (Ful7

8

Clearly, a professional should have due regard to the principles of confidentiality and not assume that a patient is content for friends or relatives to be present. The “MacCAT-T” is a tool devised by two American psychiatrists: Thomas Grisso and Paul S. Appelbaum. The tool comprises a structured interview following a consistent format in which questions are phrased in a defined way and predetermined cues used to elicit information whilst applying a quantitative rating. The interview covers the patient’s: (i) appreciation of his or her disorder; (ii) understanding of treatment and risks/benefits; (iii) knowledge of alternative treatments; (iv) reasoning; and (v) ability to express a choice.

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ford et al., 2003; Parmentier et al., 2007) to practical challenges of applicability (Gallagher and Clark, 2002; Hughes and Baldwin, 2006). Once again, the virtuous healthcare team will discuss the role of advanced decision-making and substituted judgement to make explicit how connectedness is perceived by patient, carers and professionals. What values were important to the person when they were capacitous? How do those values, or what Dworkin calls “critical interests” (Dworkin, 1993) relate to the pleasures of the incapacitated person? Is there connectedness between previous interests and current interests? As with the “assessment of capacity” itself, the development or implementation of advanced statements is not in itself a “moral” act, but can become so once professionals reflect on the ethical basis for preferences expressed in anticipation of declining capacity.

3 Autonomy: an unhealthy ethical preoccupation? Whilst determinations of capacity open the door to legal rights and privileges, the ethical premise on which assessments of capacity occur warrants attention. The assessment of capacity is commonly said to be the legal embodiment of the moral principle of autonomy. But is “autonomy” really indicative of moral principle? And if “autonomy” does have inherent moral value, what is it and why is it so? The arguments that accompany ethical discussions relating to facilitating patient autonomy focus on principles of self-determination. Yet, embedded in the notion of self-determination, which is not inherently morally valuable, are moral assumptions about personhood, the nature of human relationships and the aims of healthcare. Respect for autonomy too often depends on a shared definition of personhood characterised by the ability to remember, comprehend often complex information that might be poorly communicated by over-worked professionals and express preference. Those who advocate “respect for autonomy” as their sole moral guide too readily assume constancy of identity, experience and continu-


ity of narrative that may be inapplicable to the person with cognitive impairment yet who is able to convey preference (Kitwood, 1997; Hughes, 2001). Too often invocations of autonomy construct human relationships in a separatist way – individuals making personal choices in a social vacuum that neither considers nor accounts for the complex, embedded context in which most human interaction occurs, particularly when illness renders one vulnerable (Verkerk, 2001; Price and Bowman, 2007). Indeed, even in the case of the so-called competent patient, heuristic influences on decisions renders the notion of the rational decision taken on the basis of information questionable (Schwab, 2006). In the context of people with dementia, autonomy, or at least the version of it that dominates Western bioethics discourse, may not the most persuasive or frankly useful moral principle to inform practice depending as it does on these assumptions that do not account for the experiences of many people with dementia and their carers9 who are struggling not with life-changing, one-off events requiring a definitive decision, but with the daily demands of preserving dignity, maximising independence and adjusting to change (Ekman and Norberg, 1988; Hughes et al., 2002; Pucci et al., 2003; Gatmans and Milisen, 2006).

4 Alternatively autonomous: other ethical models for decision-making Autonomy then may be a useful moral principle when considering the question of capacity in people with dementia only if one adopts a relational rather than functional model of personhood and locates decision making in the wider empirical social context (Sartorius, 2002; Eastman and Starling, 2006; Oppenheimer, 2006; Price and Bowman, 2007). What alternative ethical theories and models might be useful? Relational ethics of care (Noddings, 2003; Sadler, 2005) prioritise interaction between people, thereby 9

And the dilemmas of carers may be quite different from those of professionals (Hughes et al., 2002)

allowing the professional to be alert to, and develop, the beneficent aims of virtue ethics (Price and Bowman, 2007). The professional-patient relationship is redrawn and all who care about the well-being of an individual embark upon a shared enterprise of facilitating choice and the expression of preference. The power imbalance embedded in the “assessment of capacity” model in which a professional determines whether a person is or is not to be able to make decisions is replaced with compassion and respect. Such an approach may assist healthcare professionals who are untowardly distracted by seeking the “lost” person whilst addressing relatives’ concerns which may not always appear desirable or even ethical (Pucci et al., 2003). The antipathy to the humane, psychological and caring aspects of healthcare that, controversially, some (male) commentators have described as a “masculine” approach (Marinker, 1998, p. 70) is rendered unethical. “Relational autonomy” renders the assessment of capacity one of several moral factors to be considered in a wider “ethic of care” in which the interests of people with dementia are considered with parity of attention to context, carers and a changing situation in which roles and priorities shift (Verkerk, 2001). In a thought-provoking analysis, Post (2006) uses the term “respectare” to plead for a collective revisiting of how people with impaired capacity are treated. Post argues for moral recognition of what he calls people’s “essential humanity” whatever cognitive decline may have occurred as a consequence of a dementing process suggesting that to do otherwise is to accede to the “moral blindness” of “hypercognitive snobbery” (Post, 2006, p. 223). Such a starting position avoids the perhaps logical, but disarming, conclusions of philosophical perspectives that depend on functional models of personhood and expressions of preference as individualised episodes of unmitigated autonomy. An ethos of communitarian inclusion instead replaces the binary and definitive construct of healthcare professional assessing capacity and permitting or denying illusory “self-determination” depending whether a person meets the “test” of capacity applicable in his or her jurisdiction.

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Moreover, a communitarian, respectful and inclusive moral world is not merely beneficial for those in whom cognitive function is impaired and for whom “capacity” becomes a frustratingly elusive target. Nor does such a perspective merely enhance the likelihood of “virtuous” healthcare professionals who recognise the limits of relying exclusively on superficial invocations of autonomy as their ethical guide. A moral community in which diversity of function is noted, shapes care but does not irrevocably determine choices allows for recognition of the over-stated divide between pathology and normality that so often imbues healthcare discourse. The positivist tendency artificially to delineate between disease and health thereby representing medical knowledge as constant, certain and unchallengeable has been challenged since Kuhn (1962) first exposed how chemists and physicists reinterpret and differently understand the same scientific “fact” (Bowman, 2007). Noting that biomedical knowledge and therefore practice are socially constructed and shaped by prevailing cultural norms is not revelatory, so why include it at all in a chapter on ethics and capacity? The answer, for this author, lies in the sense of “otherness” that the certainty of the positivist discourse of biomedicine allows for that might shape how healthcare professionals respond to people with dementia and their carers. The sort of communitarian moral framework in which respect, care and person-centred, contextual decision-making depend less on an ability to meet the formal rules of “capacity” and more on the imagination, patience and sensitivity of the professionals posited by Kitwood (1997) and Post (2006) exposes the continuum of “memory status” across people of all sorts, with and without, formal diagnoses of “dementia”. No longer is “dementia” a state of “otherness” but represents one point on a distribution curve of variable cognitive function and impairment (Harding and Palfrey, 1997). It is a dynamic but not determinative state and most importantly of all, it is a familiar not an alien state. Thus an inclusive, open understanding of cognition, impairment, social relationships and care enhance not only the experiences of patients and their families, but the moral charac-

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ter of those professionals who work with patients and families. Put simply, being open to ways of knowing about disease makes it more likely a professional will be open to multiple ways of facilitating ethical decision-making rather than depending on the rule based “assessment of capacity” prototype which mirrors narrow biomedical approaches to nosological categorisation.

5 Conclusion: compassionately engaging with capacity The title of this chapter sums up the challenge for those working with people who have dementia: the general trend to constructing the moral question as a matter of who decides about a person’s care seductively but dangerously elides multiple moral assumptions that warrant close attention. First, the assumption is that someone will prevail in the quest to make decisions, be it the patient, the clinical team or, as substituted judgement becomes commoner, a proxy. There is implied potential for adversary between the parties who seek to be the voice that prevails. Further the assumption that the question should be ‘who decides’ rests, of course, on another assumption, namely that there is an effective mechanism by which to allocate the decision-making role fairly – and that mechanism is generally taken to be the assessment of capacity. To some extent, the unquestioned emphasis on capacity assessment is understandable for the assessment of capacity is essential to ethical medical practice – but only because it has been constructed thus, partly by law, partly by the conventions of medicine and partly by the language of medical ethics. The tendency to embrace guidelines and tools for assessing capacity, however excellently drafted, grounded in legal principle or well-validated, and to treat such guidance as a clinical recipe book is flawed because it obscures the ethical roots of what, it is argued, professionals must reflect on and discuss in order to facilitate decision-making with their patients irrespective of diagnosis, cognitive status or proposed treatment.


There is no inherent moral magic in the words “capacity” or “autonomy”. Yet in the sometimes overwhelmingly demanding environment of healthcare, it is perhaps understandable if professionals prefer the apparent simplicity of attributing “capacity status” whilst invoking phrases such as “respecting autonomy” or “acting in best interests due to lack of autonomy” to support these immensely difficult decisions. But, to be seduced, however understandably, by the apparent answers of a thorough capacity assessment is ultimately to diminishing to patients, carers and even what it means to be a professional (Durkheim, 1957; Cruess et al., 1999; Hoff, 2000; Arnold and Stern, 2006). Without overt and considered attention to the reasons why moral value is afforded to one version of care over another version of care, the healthcare professional who conducts assessments of capacity is engaging in the ethical equivalent of prescribing without understanding anything about the mechanism of action or side effects of the drug. To continue the pharmacological metaphor, assessing capacity has an important place in the care of people with dementia, but it is potent, has been cleverly marketed invoking the language of ethics and law but may have significant side effects if it is not well understood. The potency of the assessment of capacity lies in its all-encompassing representation and presumptions. The task too readily becomes to identify which party will make decisions with too little regard for how and why those decisions are taken. It may be too readily assumed that merely by performing a skilful assessment of a person’s capacity, one has acted ethically. Moreover, so to do is to raise functionality to the ultimate determinative status which may be questionable to many professionals working with patients with cognitive impairment. The side-effects of such an approach to assessing capacity are that the power-imbalance between patient and professional may be reinforced not remedied, decisions can be taken without reference to the context of connectedness, interests and preoccupations of the patient one is serving, values that could be considered inherent in healthcare are lost and one’s practice becomes reductionist, artificial and legalistic.

Thus, the challenge for all healthcare professionals is to revisit their moral roots or perhaps even discover them for the first time! Ethical development, like any area of professional development, is a process in which values, principles, evidence, anecdote and empirical reality are exposed, shared, challenged and reconsidered (Bowman, 2005). In other words, it is not a process that is easily fitted into a busy working day which possibly explains why the assessment of capacity may become the ethico-legal panacea without due attention to its ethical underpinning. However, it is only by making time and space to reflect on what it means to be human, to make choices, to care and perhaps ultimately to be a healthcare professional serving others will practitioners maximise the chances that the constant flow of challenging decisions they facilitate and take daily are justifiable both externally and perhaps more importantly internally. Indeed, moving beyond a mantra-like invocation of the word “autonomy” to consider some of the questions and challenges raised in this chapter with colleagues may even bring sufficient ethical peace to ensure a good night’s sleep!

References Agich GJ (ed) (2003) Dependence and autonomy in old age: an ethical framework for long term care. Cambridge University Press, Cambridge Arnold L, Stern DT (2006) What is medical professionalism? In: (Stern DT, ed) Measuring medical professionalism. Oxford University Press, New York Beauchamp TL, Childress JF (1994) Principles of biomedical ethics. Oxford University Press, New York Bowman D (2005) The challenges of an ethical education in Europe. Die Psychiatrie 2(3): 158–64 Bowman D (2007) Fallible, unlucky or incompetent? Ethicolegal perspectives on clinical competence. In: (Bowman D and Spicer J, eds) Primary care ethics. Radcliffe Medical Press Bowman D, Spicer J (eds) (2007) Primary care ethics. Radcliffe Medical Press British Medical Association and The Law Society (1995) Assessment of mental capacity: guidance for doctors and lawyers. BMJ Books, London

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Campbell A (2003) The virtues (and vices) of the four principles. J Med Ethics 29: 292–96 Clement G (1998) Care, autonomy and justice: feminism and the ethic of care. Westview Press, Boulder, CO Cowley C (2005) The dangers of medical ethics. J Med Ethics 31: 739–42 Cruess R, Cruess S, Johnston SE (1999) Renewing professionalism: an opportunity for medicine. Acad Med 282(9): 881–82 Durkheim E (1957) Professional ethics and civic morals. Routledge, London Dworkin R (1993) Life’s dominion: an argument about abortion, euthanasia and individual freedom. Alfred Knopff, New York Eastman N, Starling B (2006) Mental disorder ethics: theory and empirical investigation. J Med Ethics 32: 94–99 Ekman SL, Norberg A (1988) The autonomy of demented patients: interviews with caregivers. J Med Ethics 14: 184– 87 European Dementia Consensus Network (EDCON) (2006) 4th Consensus Statement: Assessment of Competence in Dementia; http://www.madariaga.coleurop.be (accessed September 2006) Fulford B, Morris K, Sadler J, Stanghellini G (2003) Nature and narrative: an introduction to the new philosophy of psychiatry. Oxford University Press, Oxford Gallagher P, Clark K (2002) The ethics of surgery in the elderly demented patient with bowel obstruction. J Med Ethics 28: 105–08 Gardiner P (2003) A virtue ethics approach to moral dilemmas in medicine. J Med Ethics 29: 297–302 Gatmans C, Milisen K (2006) Use of physical restraint in nursing homes: clinical-ethical considerations. J Med Ethics 32: 148–52 Gillon R (1985) Philosophical medical ethics. Wiley, Chichester Gillon R (2003) Ethics needs principles – four can encompass the rest – and respect for autonomy should be “first amongst equals”. J Med Ethics 29: 307–12 Gillon R, Lloyd A (eds) (1993) The principles of healthcare ethics. Wiley, Chichester Grisso T, Appelbaum PS (1998) Assessing competence to consent to treatment: a guide for physicians and other healthcare professionals. Oxford University Press, New York Grisso T, Appelbaum PS, Hill-Fotouhi C (1997) The MacCAT-T: a clinical tool to assess patients’ capacities to make treatment decisions. Psychiatric Services 48: 1415–19 Harding N, Palfrey C (1997) The social construction of dementia: confused professionals? Jessica Kingsley Publishers, Philadelphia, PA

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Harris J (2003) In praise of unprincipled ethics. J Med Ethics 29: 303–06 Hoff T (2000) Medical professionalism in society. New Eng J Med 342(17): 1289 Hughes JC (2001) Views of the person with dementia. J Med Ethics 27: 86–91 Hughes JC, Hope T, Reader S, Rice D (2002) Dementia and ethics: the views of informal carers. J R Soc Med 95: 242–46 Hughes JC, Baldwin C (2006) Ethical issues in dementia care: making difficult decisions. Jessica Kingsley Publishers, London Kitwood T (1997) Dementia reconsidered. The person comes first. Open University Press, Buckingham Larabee MJ (Ed) (1993) An ethic of care: feminist and interdisciplinary perspectives. Routledge, London Macintyre A (1985) After virtue – a study in moral theory, 2nd edn. Duckworth & Co, London Marinker M (1998) “What is wrong” and “How we know it”: changing concepts of illness in general practice. In: (Louden I, Horder J, and Webster C, eds) General practice under the National Health Service 1948–1997. Oxford University Press, Oxford Noddings N (2003) Caring: a feminine approach to ethics and moral education, 2nd edn. University of California Press, Berkeley, CA Oppenheimer C (2006) I am, thou art: personal identity in dementia. In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind, meaning and the person. Oxford University Press, Oxford Parmentier H, Spicer J, King A (2007) Ethical considerations in the primary care of the elderly demented patient. In: (Bowman D and Spicer J, eds) Primary care ethics. Radcliffe Medical Press Post SG (2006) Respectare: moral respect for the lives of the deeply forgetful. In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind, meaning and the person. Oxford University Press, Oxford Price J, Bowman D (2007) Complexity, guidelines and ethics. In: (Bowman D and Spicer J, eds) Primary care ethics. Radcliffe Medical Press Pucci E, Belardinelli N, Borsetti G, Guiliani G (2003) Relatives’ attitudes towards informing patients about the diagnosis of Alzheimer’s disease. J Med Ethics 29: 51–54 Sadler JZ (2005) Values and psychiatric diagnosis. Oxford University Press, Oxford Sartorius N (2002) Fighting for mental health: a personal view. Cambridge University Press, Cambridge Schneider PL, Bramstedt KA (2006) When psychiatry and bioethics disagree about patient decision making capacity (DMC). J Med Ethics 32: 90–93


Tong R (1997) Feminist approaches to bioethics. Westview Press, Boulder Toon P (2002) The sovereignty of virtue. Br J Gen Pract 52: 694–95

Toon P (2007) Setting boundaries – a virtue approach to the clinician-patient relationship. In: (Bowman D and Spicer J, eds) Primary care ethics. Radcliffe Medical Press Verkerk M (2001) The care perspective and autonomy. Med Health Care Philos 4: 289–94

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Chapter 6

ARE LEGAL SYSTEMS IN EUROPE FIT FOR THE DEMENTIA CHALLENGE? APPROACH OF THE COUNCIL OF EUROPE Nicole Kerschen1

1 Introduction Are legal systems in Europe fit for the dementia challenge? The answer to this question is given by the Council of Europe2, which aim is to protect the individual’s dignity and fundamental rights in general, and more specifically with regard to the application of biology and medicine. Principles and legal standards were drawn up in the “Convention on human rights and biomedicine”3. This Convention is the first legally binding international text designed to preserve the human being against the misuse of biological and medical advances. It was adopted by the Committee of Ministers of the Council of Europe on 19 November 19964 and opened for signature in Oviedo on 4 April 1997. It is founded on the same approach, the same ethical principles and the same legal concepts than the Convention for the protection of human rights and fundamental freedoms of 4 November 1950 from the Council of Europe5.

1

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Nicole Kerschen ([email protected]) coordinated LAWNET I, a study on the rights of people with Alzheimer’s disease, for Alzheimer Europe: www.alzheimereurope.org/?lm1=17EE9410D104. 46 European states belong as member states to the Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: www.coe.int/T/E/legal_affairs/legal_cooperation/bioethics/ Belgium and Germany abstained from voting on the adoption of the Convention. Other international instruments are mentioned in the preamble of the Convention, like the Universal Declaration of human rights of the United Nations (10 December 1948).

Between April 1997 and November 2006, thirtyfour states6 signed the Convention, but only part of them ratified it. Application needs ratification. Ratification means that national law conforms to the Convention. Conformity may be achieved either by applying directly the Convention’s provisions in domestic law or by enacting the necessary legislation to give effect to them. The European Convention on human rights and biomedicine applies in the following European countries: Bulgaria (2003), Croatia (2004), Cyprus (2002), Czech Republic (2001), Denmark (1999), Estonia (2002), Georgia (2001), Greece (1999), Hungary (2002), Iceland (2005), Lithuania (2003), Moldova (2003), Norway (2007), Portugal (2001), Romania (2001), San Marino (1999), Slovakia (1999), Slovenia (1999), Spain (2000) and Turkey (2004)7. It must be noted that France, Germany and Great-Britain do not belong to this list. They played an important role in the leadership of the Steering Committee on Bioethics (CDBI), which drafted the text. France signed the Convention, but did not ratify it afterwards. Germany and Great Britain did not even sign it. The main principle of the Convention is presented in Part 2; it is applied, in Part 3, to consent in case 6

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Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Georgia, Greece, Hungary, Iceland, Italy, Latvia, Lithuania, Luxembourg, Moldova, Netherlands, Norway, Poland, Portugal, Romania, San Marino, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Macedonia, Turkey, Ukraine (as member states of the Council of Europe) and Montenegro (as a non-member state of the Council of Europe). The year of the entry in force is put in brackets.

Chapter 6: N. Kerschen

of intervention in the health field; in Part 4, its application in the special field of research is analysed8. In each part, the answers to the following questions are highlighted: How do principles apply to persons with dementia? How are these people protected, if they are unable to consent?9

2 Main principle of the Convention: primacy of the human being The purpose of the Convention is that all countries “shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect to their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine”. Article 1 restricts the scope of the Convention to human biology and medicine, thereby excluding animal and plant biology insofar as they do not concern human biology or medicine. But the Convention covers all medical and biological applications concerning human beings, including preventive, diagnostic10, therapeutic and research applications. The Convention recognises, in Article 2, the primacy of the human being. It is said that “the interests and welfare of the human being shall prevail over the sole interest of society or science”. What does it mean? Interests at stake are not equal. In principle, priority is attached to the interests of the individual opposed to those of the science or society. But the adjective “solely” means that the interests of science or society 8

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We decided to exclude consent in case of transplantation purposes. For the purposes of this chapter, we used the Explanatory Report to the Convention on human rights and biomedicine from the directorate of legal affairs of the Council of Europe. Strasbourg, May 1997. Nicole Kerschen, L’individu, maître de ses choix en matière biomédicale (approche européenne): L’exemple du diagnostic précoce dans la maladie d’Alzheimer. 3e Assises des Consultations de la Mémoire; Paris, 1–2 février 2002 et Conférences internes de la Clinique de Psychiatrie gériatrique des Hôpitaux Universitaires de Genève (Prof. Giannakopoulos); Genève, 9 mai 2003. Ronéo 9 pages et annexe.

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must come directly after the interests of the individual. The aim of the Convention is to shield the individual from any threat resulting from the improper use of scientific developments. All articles must be interpreted in the light of the principle of primacy of human being. This is the originality of the approach of the Council of Europe. It must be said here, that Article 27 gives the states the possibility to grant a wider measure of protection than is stipulated in the Convention. What does “a wider measure of protection” mean? The text lays down common standards with which the states must comply, while allowing them to provide greater protection of the human being and of human rights with regard to applications of biology and medicine. What if a conflict arises between various rights established by the Convention? For example, between a scientist’s right of freedom of research and the rights of a person submitting to the research? The expression “a wider measure of protection” must be interpreted in the light of the purpose of the Convention, as defined in Article 1, namely the protection of the human being with regard to the application of biology and medicine. As a consequence, any additional protection can only mean greater protection for the person submitting to research.

3 Consent in case of an intervention in the health field The Convention provides, in Chapter II on consent, rules for five different cases: – – – – –

consent of a person able to consent (Article 5) protection of a person unable to give consent (Article 6) special situation of a person with mental disorder (Article 7) emergency issues (Article 8) the case of previously expressed wishes (Article 9).

General rules are first highlighted. Secondly, the application of the main principle in special situations

Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe

is analysed. Finally, the case of previous expressed wishes is presented.

3.1 General rules Consent of a person able to give consent Article 5 presents a very simple principle: no one may be forced to undergo an intervention in the health field without his or her consent. The term “intervention” must be understood in a broad sense: it covers all medical acts, in particular interventions performed for the purpose of preventive care, diagnosis, treatment and rehabilitation or in a research context. All interventions must be performed in accordance with the law, supplemented and developed by professional rules. Human beings must be freely able to give or refuse their consent. This approach is based on patient’s autonomy in relationship with healthcare providers. It restrains the paternalistic approach, in which the patient’s wish might be ignored. Consent must be free and informed. The patient’s consent is considered to be free and informed if it is given on the basis of objective information from the responsible healthcare professional as to the purpose and the nature of the intervention, as well as on the potential consequences and risks of it, or of its alternatives (Article 5 §2). But the elements enumerated in this article are not an exhaustive list. Informed consent may apply, according to the circumstances, additional elements, as for example the risks related to the individual characteristics of each patient, such as age or existence of other pathologies. Moreover, information must be sufficiently clear and suitably worded for the person, who is to undergo the intervention. The individual must be put in a position that he or she could weigh up the necessity or usefulness of the aim and methods of the intervention against the risks, the discomfort or the pain it will cause. Consent may take various forms. It may be expressed (verbal or written) or implied. In some cases,

as invasive diagnosis, acts or treatment, express consent may be required. Moreover, expressed specific consent must be obtained from a person participating in research (see Part 4). Finally, freedom of consent implies that consent may be withdrawn, at any time, by the person. The decision of the person may be respected once he or she has been fully informed about the consequences. But professional standards and obligations, as well as rules of conduct that apply in such cases, may oblige doctors to continue the intervention so as to avoid seriously endangering the patient’s health. Protection of a person not able to consent The principle laid down in Article 6 is the following: an intervention may only be carried out on a person, who does not have the capacity to consent, for his or her direct benefit. Deviation from this principle is possible in case of medical research (see Part 3). A difference is made between individuals unable to give full and valid consent to an intervention due to their age (minors) and individuals unable to consent due to their mental incapacity (adults). We focus on the second instance. Firstly, the incapacity to consent referred to in Article 6 must be understood in the context of a given intervention. However, account has been taken of the diversity of legal systems in Europe. In some countries, the patient’s capacity to consent must be verified for each intervention; in other countries, a person may be declared legally incapacitated which implies incapacity of consenting to one or more types of act. As the purpose of the Convention is not to introduce a single legal system for the whole of Europe, but protect people who are not able to give their consent, reference has been made in the text to domestic law, which will determine, in each country, whether or not a person is capable for consenting to an intervention. In order to protect the fundamental rights of human beings and to avoid the application of discriminatory criteria, Article 6 §3 lists the reasons why an adult may be deprived of his or her capacity of autonomy under domestic law: a mental disability, a

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disease or similar reasons. It must be noted that age has not been listed as a reason. The term “similar reasons” refers to situations such as accidents or states of coma, where the patient is unable to formulate his or her wishes or to communicate them. If adults have been declared incapable, but for a moment do not suffer from a reduced mental capacity, they must themselves consent. Secondly, when an adult is not capable of consenting to it, the intervention may only be carried out with the authorisation of his or her legal representative, or any person, authority or body provided for by the law (Article 6 §3). It must be noted that family members or relatives may only intervene if they are legal representatives. But participation of adults not able to consent in decisions must not be totally ruled out. Therefore, Article 6 §4 foresees the obligation to involve the adult in the authorisation procedure whenever possible. Thirdly, the representative, authority or body, whose authorisation is required for the intervention, must be given adequate information about the consequences and risks involved. The same conditions apply, as in Article 5, for a person able to give consent. Finally, the authorisation may be withdrawn by the representative, authority or body, at any time, provided that this is done in the best interest of the person not able to consent. The condition of “best interest” is very important. While a person capable of giving consent to an intervention has the right to withdraw that consent freely, even if it appears to be contrary to his or her interest, an authorisation given by a representative, authority or body must be retractable only if this is in the interest of the person unable to consent. This condition is in line with the objective of protecting the person. Domestic law should also provide adequate recourse procedures.

3.2 Special situations Protection of persons with mental disorder Article 7 deals with a special question, which may be important in case of dementia. This question is about

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the treatment of patients suffering from mental disorders: “a person who has a mental disorder of a serious nature may be subjected, without his or her consent, to an intervention”. Article 7 constitutes an exception to the general rule of consent for persons able to consent (Article 5). It applies only to persons, who are capable to consent, but whose ability to decide on a proposed treatment is severely impaired by their mental disorder. If a person with mental disorder is not capable for consenting, authorisation for treatment must be given under the conditions of Article 6. But Article 7 also guarantees the protection of these persons by submitting treatment for their mental disorders without their consent to specific conditions. It must be noted that it does not apply in case of specific emergency situations mentioned in Article 8. Four conditions must be fulfilled. The first condition is that the person must be suffering from a mental disorder of a serious nature, which means that an impairment of the person’s mental faculties must be proven. The second condition is that the intervention must be aimed at treating specifically the mental disorder of the person, which means that for all other interventions the practitioner must seek the consent of the patient. If a person capable of consent refuses an intervention not aimed at treating her or his mental disorder, the opposition must be respected in the same way as the opposition from other patients capable of consent. The third condition is that the absence of treatment must seriously harm his or her health. Such a risk exists when a person is a danger for himself or herself, for example in case of attempt committing suicide. Article 7 is not concerned, when patients are a risk for other persons’ rights or freedoms, for example in event of violent behaviour. Article 7 protects, on one hand, the patient’s health and, on the other hand, the patient’s autonomy. Intervention without consent is only allowed if there is a serious risk for the person’s health. The fourth condition is that prospective conditions prescribed by national law must be observed.


These conditions include supervisory, control and appeal procedures. Emergency situations In these situations, doctors may face a conflict of duties between their obligation to provide care and their obligation to seek the patient’s consent. Article 8 allows them, in such situations, to carry out immediately any necessary medical intervention for the benefit of the health of the individual concerned, without waiting until the consent of the patient or the authorisation of the legal representative, authority or body, where appropriate, can be given. As Article 8 departs from the general rules (Articles 5 and 6), its application is submitted to special conditions. Firstly, the possibility is restricted to emergencies that prevent the practitioner from obtaining the appropriate consent. It applies, on the one hand, to persons capable for consent, and on the other hand, to persons unable to consent. In the last case, a doctor may be unable to contact a legal representative, authority or body, who would have to authorise an urgent intervention. Secondly, the possibility is restricted to medically necessary interventions which cannot be delayed. Therefore, interventions for which a delay is acceptable are excluded. Lastly, the intervention must be carried out for the immediate benefit of the individual concerned.

Previously expressed wishes must be taken into account. This does not mean that they should be necessarily followed. Wishes expressed a long time before the intervention and science progress may be grounds for not following the patient’s opinion.

4 Application in the special field of research The Convention provides, in Chapter V on scientific research, rules for persons undergoing research (Articles 15 to 17). In this field, an additional protocol was drawn up with the purpose to develop further the principles contained in the Convention. It must be noted that it could not depart from the provisions of the Convention. Moreover, it could not lay down rules affording human beings less protection than that resulting from the principles of the Convention. The Additional Protocol to the Convention on human rights and biomedicine concerning biomedical research was adopted by the Committee of Ministers of the Council of Europe on 30 June 2004 and opened for signature in Strasbourg on 25 January 2005. To enter in force it needs five ratifications. In November 2006, twenty-one states have signed it11, but only three have ratified it – Bulgaria, Slovakia and Slovenia – which means that it is not yet in force. France, Germany and Great Britain did not sign it. Before explaining the applicable rules, we must define the term “biomedical research” and highlight some of the fundamental principles12.

3.3 Case of previously expressed wishes Article 9 lays down the following principle: The previously expressed wishes, relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes, shall be taken into account. This Article covers all situations where individuals, capable of understanding, have foreseen that they might be unable to give their valid consent and have previously expressed their consent (assent or refusal). It applies in case of emergency, but also in case of progressive diseases like Alzheimer’s disease.

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Bosnia and Herzegovina, Bulgaria, Denmark, Georgia, Greece, Hungary, Iceland, Italy, Lithuania, Luxembourg, Moldova, Norway, Portugal, Romania, Serbia, Slovakia, Slovenia, Sweden, Turkey, Ukraine (as member states of the Council of Europe) and Montenegro (as a non-member state of the Council of Europe). For the purpose of this chapter, we used the Explanatory Report to the Additional Report to the Convention on human rights and biomedicine concerning biomedical research of the Directorate General I, Legal Affairs. Strasbourg, 25 January 2005.

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Definition of biomedical research

Fundamental principles

The Additional Protocol defines its scope as “the full range of research activities in the health field involving interventions on human beings”. How can we distinguish medical research from medical practice, especially innovative medical practice? In medical practice, the sole intention is to benefit the individual patient, not to gain knowledge of general benefit. In biomedical research, the primary intention is to advance knowledge so that patients in general may benefit, while an individual research participant may or may not benefit directly. What do “research activities” include? The protocol covers research into molecular, cellular and other mechanisms in health, disorders and disease, carried out by doctors, biologists and other professionals such as psychologists. It includes diagnostic, therapeutic, preventive and epidemiological studies as far as they involve interventions on the human being. Moreover, all aspects of the research project from the beginning to the end, even selection and recruitment of the participants are included. What does “intervention on human beings” mean? The protocol states that, for its purpose, the term of “intervention” covers, on the one hand, physical interventions, and on the other hand, other interventions when they involve a risk for the psychological health of the person concerned. The last include questionnaires, interviews and observational research taking place in the context of a biomedical research protocol, when some questions are of an intimate nature capable of resulting in psychological harm (sexual history, psychiatric disorders, rare genetic diseases, family medical histories…). What kind of research is excluded? First, the protocol does not address research on the bodies or body parts of deceased persons. Therefore, research on the brain of Alzheimer’s patients after their death is excluded. Second, the scope of the protocol does not extend to studies whose purpose is not to gain new scientific knowledge, but to collect or to process information for purely statistical purposes such as for audits or monitoring of the healthcare system.

The preamble of the protocol affirms the commitment of the countries, which are parties to it, to take necessary measures to safeguard human dignity and the fundamental rights and freedoms of human beings with regard to biomedical research. The principle of primacy of the human being applies here, which means that in the event of a conflict between the human being participating in research and the interest of science or society, priority must be given to the former. The protocol recognises the freedom for scientists to carry out biomedical research. Freedom of biomedical research is justified not only by humanity’s right to knowledge, but also by the considerable progress its results may bring in terms of health and well-being of patients. But such freedom is not absolute. It is limited by the fundamental rights of individuals expressed by the provisions of the Convention and the Additional Protocol.

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4.1 Protection of persons undergoing research All persons undergoing research are given protection. The Convention, in Article 16, states that “research on a person may only be undertaken if all the following conditions are met”. Five conditions must be fulfilled for all research on human beings. Consent is one of these conditions. The first condition is that there must be no alternative of comparable effectiveness to research on humans. What does this mean? It means that research will not be allowed if comparable results can be obtained by other means, or that invasive methods will not be authorised if less invasive or non-invasive methods can be used with comparable effect. The second condition is that the risks that may be incurred by the person are not disproportionate to the potential benefits of the research. The third condition is that the research project needs to be approved by a competent body after an independent examination of its scientific merit, includ-


ing assessment of the importance of the aim of the research and multidisciplinary review of its ethical acceptability. The fourth condition is about the information of the person undergoing research. She or he has to be informed in advance of her or his rights and the safeguards prescribed by domestic law for his or her protection. The protocol has developed the protection of the person undergoing research in the field of information. A person asked to participate in a research project shall be given adequate information in a comprehensive form. The protocol does not require that the information should be given by a specific person. This should be determined by the nature of the research, the needs of the potential participant, the national practice or the national law. The information must be sufficiently clear and comprehensible for the person undergoing research. It should be provided in a way to make it understandable taking into account the level of knowledge, education and psychological state of the potential participant. It shall also be documented, which means that it must be recorded (written, video, audio recordings). The person shall be given enough time to review the information. Information shall cover the purpose, the overall plan and the possible risks and benefits of the research project. Information on the risks involved in research must cover any risk related to the individual characteristics of each participant, such as age or the presence of other disorders. It should also include the opinion of the ethics committee. The protocol enumerates eight different items that have to be addressed through information. In addition, the protocol states that the person must be informed of her or his right to refuse consent or to withdraw consent at any time without being subject to any form of discrimination, in particular regarding the right to medical care. The fifth condition is on consent. According to the general rule of Article 5, human beings must consent to each intervention in the health field. This applies to research activities. The necessary consent must have been given expressly, specifically and documented. In

the sphere of biomedical research, implicit consent is insufficient. There must be a written consent. “Specific consent” means that consent has to be given to one particular intervention carried out in the framework of research. Such consent may be freely withdrawn by the person at any phase of the research. The protocol adds that the refusal of consent or the withdrawal of consent to participation in research shall not lead to any form of discrimination against the person concerned, in particular regarding the right to medical care. The participant should not be required to give a reason for withdrawal. The protocol foresees the situation, where the capacity of the person undergoing research is in doubt, while the person has not been declared legally incapable of giving consent by a legal body. It requires arrangements to be put in place to verify whether a potential research participant has the capacity to give informed consent. These arrangements could be developed and implemented through professional standards. It must be noted, that, in these cases, the scientist is responsible for verifying the capacity of the participants from whom he obtains consent. Information on arrangements for such verification in the context of a specific research project should be submitted to the ethics committee reviewing the project.

4.2 Protection of persons unable to consent to research First of all, general rule of Article 6 applies in the field of biomedical research. Moreover, people unable to consent are given a special protection. The Convention establishes a principle and an exception. Principle The results of a biomedical research carried out on a person unable to consent must have the potential to produce real and direct benefit to the person’s health (Article 17 § 1). This applies in the field of research the principle laid down in Article 6 for all interventions in the health field, which means that an

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intervention may only be carried out on a person, who does not have the capacity to consent, for his or her direct benefit. But the application of this principle is not enough. Research on a person without the capacity to consent may be undertaken only if all the conditions applicable to persons able to consent are fulfilled (no alternative to research on humans, no risk/benefit disproportion, prior approval of the research project, adequate information) plus three specific conditions. The first specific condition is that research of comparable effectiveness cannot be carried out on individuals capable of giving consent. There should be no alternative individual with full capacity, which means that recourse to research on persons unable to consent must be scientifically the sole possibility. This is the case for research aimed at improving the understanding of diseases like Alzheimer’s disease affecting these people specifically. Such research can only be carried out on adults with dementia. The second specific condition is that an authorisation of his or her legal representative, authority or body, provided for by the law, has been given specifically and in writing. The legal representative, authority or body must be informed under the same conditions that apply to persons able to consent. Moreover, the information shall be submitted to the person concerned, unless he or she is not in a state to receive the information. It should also be provided to a caregiver or a family member, when appropriate. An adult not able to consent shall as much as possible be involved in the authorisation procedure. The protocol adds that the person’s previously expressed wishes or objections must be taken into account. Advanced directives are not mentioned, but they may be recognised as a possible way of clarifying a person’s wishes. The authorisation given by a legal representative, authority or body may be freely withdrawn at any time. The third specific condition is that the person concerned does not object. This rule prohibits the carrying out of the research against the wish of the person. It reflects a concern for the autonomy and the

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dignity of the person, in the field of research, in all circumstances, even if the person is legally incapable to give consent. He or she may object by verbal or non verbal means. If the person is unable to express himself or herself, the opinion of the caregiver should be taken into account in interpreting his or her wishes. Exception A research, which has not the potential to produce results of direct benefit to the health of the person concerned, may be authorised exceptionally and under the prospective conditions prescribed by domestic law (Article 17 §2). This exception is justified by the fact that all research on mentally disabled persons or persons suffering from dementia would otherwise be impossible. It is the aim of such research to benefit persons in those groups through a better understanding of the factors which will help to maintain and improve health and wellbeing or through a better understanding of disease processes. The Convention and the Protocol enable persons in these categories to enjoy the benefits of science while guaranteeing the individual protection of the person undergoing research. Research without direct benefit will be authorised only if all the conditions applicable to persons unable to consent are fulfilled, except the “no risk/ benefit disproportion” of cause (no alternative to research on humans, prior approval of the research project, adequate information, no alternative of research on individuals incapable of giving consent, authorisation by a legal representative, no objection by the person) plus two additional conditions. The first additional condition is that the research has the aim of contributing, through significant improvement in the scientific understanding of the individual’s condition, disease or disorder, to the ultimate attainment of results capable of conferring benefit to the person concerned or to other persons in the same age or afflicted with the same disease or disorder or having the same condition. The second additional condition is that the research entails only minimal risk and minimal burden for the individual concerned. While Article 16 restricts


research in general by establishing a criterion risk/ benefit proportionality, Article 17 §2 lays down a more stringent requirement for research without direct benefit to persons incapable of giving consent. The protocol adds that any consideration of additional potential benefits of the research shall not be used to justify an increased level of risk or burden. The protocol defines what is meant by “minimal risk” and by “minimal burden”. A research bears a minimal risk if, having regard to the nature and scale of the intervention, it is to be expected that it will result, at the most, in a very slight and temporary negative impact on the health of the person concerned. Likewise, a research bears a minimal burden if it is to be expected that the discomfort will be, at the most, temporary and very slight for the person concerned. For certain participants, certain research procedures might entail risk or burden which cannot be considered minimal. That means that assessment has to be carried out on individual basis. Moreover, in assessing the burden for an individual, a person enjoying the special confidence of the person concerned shall assess the burden where appropriate. This person may be a family member, a caregiver, a partner or a close friend. If all these conditions, including specific and additional conditions, are fulfilled, research without direct benefit may be undertaken on patients with Alzheimer’s disease and other types of dementia, who are no more capable to give consent.

take place. This applies in two different situations. On the one hand it applies when a person is not in a state to give consent which means when he or she is factually unable to consent. On the other hand, it applies when it is impossible, due to the urgency of the situation, for the researcher to obtain, in a sufficiently timely manner, authorisation from a representative, authority or body, which would, in the absence of an emergency situation, be called upon to give authorisation. Domestic law has to include four specific conditions. The first specific condition is that research of comparable effectiveness cannot be carried out on persons in non-emergency situations. The second specific condition is that the research project may only be undertaken if it has been approved specifically for emergency situations by the competent body. The third specific condition is that any relevant previously expressed objections of the person known to the researcher shall be respected. “Known to the researcher” means that the potential participant has a card on his person registering such an objection or that someone accompanying the person gives information to the researcher. The fourth specific condition is that, where the research has not the potential to produce results of direct benefit to the health of the person concerned: –

4.3 Specific situation: research on persons in emergency clinical situations The protocol addresses research that can only be undertaken in emergency situations and which is intended to improve emergency response or care. What is meant by “emergency clinical situations”? A recognised emergency situation is one that is unforeseen and which requires prompt action. The protocol states that it is for the law of the countries to determine whether, and under which protective additional conditions, this research can

–

it must have the aim of contributing, through significant improvement in the scientific understanding of the individual’s condition, disease or disorder, to the ultimate attainment of results capable of conferring benefit to the person concerned or to other persons in the same age or afflicted with the same disease or disorder or having the same condition it must entail only minimal risk and minimal burden.

Finally, persons participating in an emergency research project or their representative, authority or body shall be provided, as soon as possible, with rel-

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evant information concerning their participation. Moreover, consent or authorisation for continued participation shall be requested as soon as reasonably possible. This occurs if the research participant recovers full understanding while still undergoing research.

5 Conclusion In conclusion, we come back to the title of the chapter: Are legal systems in Europe fit for the dementia challenge? Our answer is “yes” and “no”.

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The Convention on human rights and biomedicine and the Additional Protocol on biomedical research provide for a legal framework relevant to the dementia challenge. But their application depends on the willingness of the member states. An option might be the signature by the European Union. Moreover, the rules of the Convention and the Additional Protocol have to be implemented. The Council of Europe conducts a cooperation program with the member states from oriental and central Europe, called DEBRA project. This project includes multi- and bi-lateral seminars and visits and also the production of information material on the best practices throughout Europe.

Chapter 7

TESTAMENTARY AND FINANCIAL COMPETENCE ISSUES IN DEMENTIA Konstantinos N. Fountoulakis and Katerina Despos

1 Introduction It is well documented and known that old age is usually accompanied by a decline in neurocognitive function. However, many times the elderly suffer from dementia of various types. This is of course much different from normal aging and this pathological condition robs the patient of his/her memories, intellect, and abilities to recognize persons, to maintain basic functions, or even comprehensible speech. Still, all patients have of course the right to participate in decisions, especially about their health, treatment and care. Especially the elderly, have the need and the right to participate in financial and testimonial decisions. However in order for a person to be able to participate in complex decisions like them, he/she should be able to consider the benefits, burdens and consequences that will arise. Patients suffering from dementia may and often have the capacity to make some, but not all, decisions. Thus, it is necessary to determine where the limits of their capacities are, having in mind always that it is better to try to discover the patient’s true wishes and preferences rather than to immediately take to a family member for decision making. It is possible that challenges to wills on the basis of lack of testamentary capacity are likely to increase in the future. This will be the result of a combination of high prevalence of mental disorders in the elderly and the complexity of modern societies and families. The courts and all experts in the field of geriatric medicine, psychiatry and psychology will feel the burden. Professionals from these fields will be asked to assess the testamentary capacity of individuals whose wills are being challenged. But most cases

will probably be complicated. Most wills will be challenged retrospectively, in most of them there will be a radical change from a previous will, an undue influence will be alleged, and dementia may be suspected (Shulman et al., 2005). Of course the above scenario describes a very complex and difficult picture. Those professionals who perform evaluations of competency of demented patients must be specifically trained and experienced in performing clinical psychiatric interviews and administering, scoring, and interpreting psychological and neuropsychological tests. Training and experience in gerontology, neuropsychology, rehabilitation psychology, neuropathology, psychopharmacology, and psychopathology in older adults may also be necessary in order for the examiner to be able to interpret the data. Knowledge of the legislation is another factor of prime importance for the experienced mental health professional.

2 Dementia and competency Classification systems of disability make a distinction between the definition of a disease, which concerns the intrinsic pathology of a disorder, and the definition of disability, which refers to the effect the disease has on the patient’s ability to perform everyday functions (World Health Organisation, 2001). Recent studies suggest that about 20% of patients with dementia may be competent to complete advance directives in comparison to 78% of the elderly healthy volunteers (Fazel et al., 1999b). Although the statistics suggest that most demented people are unable to perform such complex tasks, they also

Chapter 7: K.N. Fountoulakis and K. Despos

suggest that about one fifth of them, especially those with an early-stage dementia may be competent to complete even advance directives. Their premorbid IQ may be an essential prognostic factor of competency. It is important to note that the mere presence of any severe mental illness does not automatically render elderly people incompetent (Regan and Gordon, 1997). What might be of particular importance is the determination of the dementia subtype, as the neuropathology and the brain areas affected by each subtype differ and subsequently differ the pattern of disordered functions. This is an important conceptual framework to have in mind when considering decision-making capacity in individual cases. Even more, the mental health professional must have in mind that competence is specific, not global, that is, an individual is or is not competent with respect to a specific decision or setting (Fazel et al., 1999a). Also, impaired awareness of deficits does not necessarily occur for all areas of functioning simultaneously. Alzheimer’s disease patients may have varying levels of awareness for deficits in several domains of functioning such as attention, recent and remote memory, everyday functioning and self-care (Starkstein et al., 1996). It is reported they may be more aware of their self-care and social and emotional deficits than of their cognitive deficits. Awareness of deficits is more problematic when the deficit involves areas that require more complex and higher order processing and integration as is the case with testamentary and financial decisions (Vasterling et al., 1997). Unfortunately, the widespread belief even among doctors is that demented patients are by definition incapable of complex decisions. A US survey showed that 72% of them believed that a diagnosis of dementia automatically renders a person incompetent (Markson et al., 1994). These beliefs have profound consequences, one of which is the fact that most records do not include sufficient and valid data to retrospectively assess competence (Toffoli and Herrmann, 1993).

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3 Definition and prerequisites for testamentary and financial competence The most important elements many professionals are unaware of, is that capacity is not an all-or-nothing “on-off ” switch. It depends both on the specific issue, the circumstances and the assistance that can be given to the patient by his/her family and professionals. In this frame, a patient may be able to make some but not all decisions. Of course, the more serious the risks or the consequences of a decision, the clearer the patient’s capacity needs to be. This decision-making capacity presumes several functions of the patient are relatively intact. These include reality testing, neurocognitive function and personal values and goals. One of the most difficult issues a professional may face is the fact that a patient’s “bad” decision from the perspective of the healthcare professionals or family caregivers is not necessarily a prime indicator of lack of capacity or incompetence, and the genuine free will of the patient should be respected. No one should “protect” the patient from “false” decisions, in case he/she is competent in making them. While some areas to be assessed are easily examined (e.g., neurocognitive function), other areas like the retention of values or judgment and reasoning are problematic. One area that has not been studied extensively is awareness of financial skills. The ability to assess awareness in this domain would be of particular value because there are many and significant risks involved in making poor financial decisions and there is a great demand by family members and caregivers, legal representatives for financial incapacity assessments (Silberfeld, 1995). Various measures (Goel et al., 1997; Loewenstein et al., 1989) are available that assess the ability to identify and count currency, complete cash transactions, write cheques, balance a cheque-book, and understand a bank statement. However, these measures only assess the ability to complete financial tasks and do not examine the subject’s understanding of the situation and the risks, benefits and alternatives associated with the decision (Cramer et al., 2004).

Testamentary and financial competence issues in dementia

4 Methods to test testamentary and financial competence in dementia Unfortunately there is no gold standard by which to determine competence to make a complex decision. Of course the use of a neurocognitive screen, such as the CAMDEX-R is highly recommended but is generally not predictive of decisional capacity. Especially when depression is present, patients may appear even more disable, but this is not by definition irreversible. On the contrary the presence of delusions or hallucinations may render the patient completely incapable of decision making, although sometimes this depends on the content and the context of the appearance of psychotic symptoms. The assessment of competence in the elderly is an assessment of general and specific functional ability and not merely the establishing of a diagnosis. Sometimes, the circumstances and clinical features of the case will make intensive and extensive study necessary to form a well-considered opinion. An opinion with respect to competence must reflect consideration of functioning in the present and in the recent past, as well as, the future implications implicit in the diagnosis. The clinical state of competence is of course subject to change (MacKay, 1989). A list of areas that should be tested and evaluated in order for the expert to arrive at a conclusion is shown in Table 1. The list includes all important suggestions found in the literature (Arie, 1996; Bassett, 1999; Bennett and Hallen, 2005; Cramer et al., 2004; Fazel et al., 1999a; Heinik et al., 1999; Lieff et al., 1984; Regan and Gordon, 1997; Sahadevan et al., 2003). An important complementary approach to assess the patient’s awareness of deficits is to compare patient’s self-reporting to the reports of a close fami-

ly member or friend (Fleming et al., 1996). Of course the underlying assumption is that individuals lacking awareness of deficits have unreliable and distorted self-perceptions and the accounts of the objective raters are accurate. The problem, however, is that one should also take into account the interest these people have in the patient’s estate.

5 Conclusion Although during the recent few decades mental health professionals and the public increasingly face more problems concerning the competency of the elderly with greater frequency, especially when they suffer from dementia, much research remains to be done in this field. Also it seems that both professionals and families of patients are insufficiently informed about competency issues. It has been reported that the children of demented patients are poorly informed as to the legal status of their parents’ financial position in spite of the fact that all feel they need assistance. Most of them would welcome the help of professionals (al-Adwani and Nabi, 1998). Unfortunately the same picture is reported for health professionals, many of which remain unaware of the provisions of the legislation and are unclear about what information will be required (Bennett and Hallen, 2005). All health professionals should know that when a person is in hospital, nursing center or similar facility, especially when this happens because of a mental disorder, should never sign any document without the knowledge and permission of the doctor in charge. This should be an absolute rule but still it is not included in most ward information booklets given to patients and relatives.

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Table 1. List of areas to be examined and basic guidelines when assessing the financial and testamentary competency of a demented patient (Arie, 1996; Bassett, 1999; Bennett and Hallen, 2005; Cramer et al., 2004; Fazel et al., 1999a; Heinik et al., 1999; Lieff et al., 1984; Regan and Gordon, 1997; Sahadevan et al., 2003) Basic psychiatric interview Delusions (especially when directly influence decisions) Hallucinations (especially when giving commands) Basic neurocognitive evaluation (with the use of tests) Orientation Memory (especially the patient must remember family members and other significant persons, must be able to keep track of financial transactions and decisions) Language (expression/comprehension of speech and written language) General knowledge (especially concerning financial issues, depending on status) Calculating ability Judgment and reasoning (especially changes from premorbid ability) Evaluation of the context Retention of personal values and goals Consistency of decisions, stable choices Understand the nature of the act being undertaken The extent of the property involved The legal heirs and all who might reasonably have a claim The choices available What are the specific consequences of the decision (e.g., how the property is distributed) Assessment of premorbid functioning Family, friends and business associates should be asked about the patient’s past and present level of function (the clinician should have in mind potential conflicts of interest) Process guidelines All relevant information should be presented in short and simple sentences. After each “input” of information, the patient is asked to tell the meaning. Assist the patient in considering what he/she thinks will be the consequences of his/her decisions. The assessment process may take much time and usually can not be rushed. The demented patient’s authentic wishes should be respected and not over-ruled in the interests of what family or staff feel is best for him/her Neuropsychological/Psychometric testing CAMDEX-R (for global cognitive evaluation) Trail Making Test (for general mental functioning) Measure for assessing Awareness of Financial Skills (MAFS) The Testament Definition Scale (TDS)

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Testamentary and financial competence issues in dementia

References al-Adwani A, Nabi W (1998) Financial management in patients with dementia; their adult children’s knowledge and views. Int J Geriatr Psychiatry 13: 462–65 Arie T (1996) Some legal aspects of mental capacity. BMJ 313: 156–58 Bassett SS (1999) Attention: neuropsychological predictor of competency in Alzheimer’s disease. J Geriatr Psychiatry Neurol 12: 200–05 Bennett H, Hallen P (2005) Guardianship and financial management legislation: what doctors in aged care need to know. Intern Med J 35: 482–87 Cramer K, Tuokko HA, Mateer CA et al. (2004) Measuring awareness of financial skills: reliability and validity of a new measure. Aging Ment Health 8: 161–71 Fazel S, Hope T, Jacoby R (1999a) Assessment of competence to complete advance directives: validation of a patient centred approach. BMJ 318: 493–97 Fazel S, Hope T, Jacoby R (1999b) Dementia, intelligence, and the competence to complete advance directives. Lancet 354: 48 Fleming JM, Strong J, Ashton R (1996) Self-awareness of deficits in adults with traumatic brain injury: how best to measure? Brain Inj 10: 1–15 Goel V, Grafman J, Tajik J et al. (1997) A study of the performance of patients with frontal lobe lesions in a financial planning task. Brain 120 (Pt 10): 1805–22 Heinik J, Werner P, Lin R (1999) How do cognitively impaired elderly patients define “testament”: reliability and validity of the testament definition scale. Isr J Psychiatry Relat Sci 36: 23–28

Lieff S, Maindonald K, Shulman K (1984) Issues in determining financial competence in the elderly. Can Med Assoc J 130: 1293–96 Loewenstein DA, Amigo E, Duara R et al. (1989) A new scale for the assessment of functional status in Alzheimer’s disease and related disorders. J Gerontol 44: 114–21 MacKay MJ (1989) Financial and personal competence in the elderly. The position of the Canadian Psychiatric Association. Can J Psychiatry 34: 829–36 Markson LJ, Kern DC, Annas GJ et al. (1994) Physician assessment of patient competence. J Am Geriatr Soc 42: 1074–80 Regan WM, Gordon SM (1997) Assessing testamentary capacity in elderly people. South Med J 90: 13–15 Sahadevan S, Chin JJ, Yap MN et al. (2003) Assessing decisionmaking capacity in dementia patients: a semi-structured approach. Ann Acad Med Singapore 32: 749–55 Shulman KI, Cohen CA, Hull I (2005) Psychiatric issues in retrospective challenges of testamentary capacity. Int J Geriatr Psychiatry 20: 63–69 Silberfeld M (1995) Sacrificing patient autonomy? Health Law Can 16: 14–16 Starkstein SE, Sabe L, Chemerinski E et al. (1996) Two domains of anosognosia in Alzheimer’s disease. J Neurol Neurosurg Psychiatry 61: 485–90 Toffoli ND, Herrmann N (1993) Determination of financial competence in consultation-liaison psychiatry. Can J Psychiatry 38: 595–98 Vasterling JJ, Seltzer B, Watrous WE (1997) Longitudinal assessment of deficit unawareness in Alzheimer’s disease. Neuropsychiatry Neuropsychol Behav Neurol 10: 197–02 World Health Organisation (2001) International classification of functioning, disability, and health. Geneva: World Health Organisation

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Chapter 8

ASSESSMENT OF COMPETENCY AND ADVANCE DIRECTIVES Julian C. Hughes

1 Introduction A discussion dealing with competency assessment and advance directives might best begin by adressing the concept of competence. The assessment of competence would then lead us to consider the definition and the criteria that have to be met in order to say someone is competent. In this case we are considering the idea of competence to complete an advance directive; so having stipulated the criteria, we should then consider what would constitute an appropriate test of this competence in accordance with these criteria. However, we should start, not just by thinking about advance directives, but also by thinking about their ultimate objectives: what is the end or aim of an advance directive? Afterwards, we shall hopefully have gained a perspective that enables us to say more about competence with respect to advance directives. I shall argue that we need the broadest possible view, which will amount to a perspective of the person. In which case, the assessment of competence will seem less like a test of the legal notion of decision-making capacity and more like an evaluative interpretation involving the person’s normative narrative.

2 The end of an advance decision The aim or point of an advance decision might seem quite straightforward. If I am concerned now that I should not be kept alive if, in the future, I were to have a massive stroke, I can stipulate this in an advance directive, or (more formally) an advance refusal of treatment. The aim, therefore, concerns the future.

This decision process, however, immediately raises complications. For, if the aim is to control the future, it is to be controlled by the present. Another way of putting the aim, therefore, is to say that the advance directive is all about how my present wishes should be enacted in the future. However, this line of reasoning would imply that the aim has at least as much to do with the present as it does with the future. This might not pose any sort of difficulty: my clear present wishes might turn out to be fully applicable to the circumstances that arise in the future and so my advance directive is enacted. However, even trying to put things in as practical and straightforward a manner as this does not satisfy what we were hoping to achieve. I need to add that my clear present wish is fully applicable to the future circumstances and that the present wish remains my clear wish in the future. There is nothing wrong with this, of course, as it may well represent the truth. It does, however, impose an obligation on clinicians, to make sure that the previous wish would still be the present wish. For this reason the Mental Capacity Act 2005, which governs the law in England and Wales from 2007, states that an advance decision is invalid if the person has done anything that is inconsistent with the previous refusal of treatment. For similar reasons the Act states that the specific circumstances of the advance refusal must obtain and that, if there have been any changes in circumstance not anticipated when the advance refusal was made that would have affected the person’s decision, then the advance refusal is not applicable. A complicating issue, therefore, is the finding that people’s preferences for lifesustaining treatment increase as cognitive function worsens (Fazel et al., 2000). All of this, therefore, has

Chapter 8: J.C. Hughes

to be considered very carefully: in practice the particular details of individual cases will be vital. There is still, however, a conceptual problem. In a preliminary manner, I previously concluded that the aim of advance decisions has at least as much to do with present wishes as with future actions. But I went on to stress how essential it was that the present wish should remain the clear future wish. Therefore, the main point seems to be the connection between the present and the future wish. However, the essential point is the future wish – and the present wish only inasmuch as it sheds light on the future wish. This function of shedding light is nonetheless crucial given that, when the decision has to be made, what is deemed to be best might be surrounded by darkness. The advance directive then comes into its own as a guide. To return to the idea of the connection between the present and the future wish, the conceptual point (but one with considerable practical relevance) concerns how this connection is maintained. The situation will be this: the doctors and nurses stand around my bedside after my major stroke debating how far to go in their attempts to keep me alive. They cannot know my present wishes. (For the sake of the argument this has to be presumed, but it’s a weighty presumption.) They know my past wishes, but to what extent do my past wishes affect what my present wishes would be if I were able to communicate them? What is the connection between the past wishes and what would be my present wishes? The rather jejune point to make is that the connection can hardly be regarded as the piece of paper on which the advance directive is written, even if in extreme cases it might be all that the clinicians have to go on. But this alone is also not the whole story. Perhaps the advance directive has been renewed every year for the last twenty years and the views it expresses have been discussed fairly frequently with my family and close friends. In short, the connection between the past wishes and the present wishes is more substantially maintained by the fullest possible account of the person’s story or narrative. Accordingly, the end of an advance decision becomes the

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end of a story. And the authenticity of the ending will depend in large measure on the accuracy and detail of the story.

3 The underpinning person My contention is that we must understand the person’s story as fully as possible in order to understand whether the ending is, in some sense of the word, authentic. (But the exact sense of “authentic” with respect to advance directives is difficult to pin down: it certainly does not equate to “reasonable” or “rational”, see Vollmann, 2001.) A purely ethical question is: is the decision to withhold treatment right (is it the moral thing to do)? It is interesting to note how understanding the person’s story interrelates with this question. If we can understand the person’s story right, so that the ending is as authentic (as in keeping with the person’s life) as possible, we are likely to make the morally correct decision. Once again there is a caveat to be added, to which I shall return. For now, however, there are two points. First, there is a connection to be made between the narrative and the decision at the end of the person’s life. There is a sense in which the narrative carries normative weight. In other words, it is not simply that there is a story that has an ending; rather, only some endings will be right, true, or authentic. The story leads us in some direction or other and the ending cannot be simply gratuitous, not if it is to be the right ending (although there is no reason to presuppose a single possible right ending). There is some element of normative constraint embedded in the narrative concerning how things might go. This leads to the second point, which is that correctly understanding the person’s story, so that we make the right moral decisions, entails that we understand the person. Even if not determinative of the decision at the end of the person’s life, almost any detail might be relevant so that clinicians making these sorts of decision need to be as open as possible to every facet of the person’s makeup. This is part of what it means to act in the person’s best interests.

Assessment of competency and advance directives

Underlying the aim of advance directives is a requirement that we take the unique individual person seriously, that we recognize the multifarious ways in which he or she might be situated. Hence, we need to see human persons as situated in a personal history; but also as embedded in social, cultural, historical, legal, moral and spiritual fields. The number of different ways in which people are embedded is a reflection of the uncircumscribable nature of personhood (Wiggins, 1987). This is a notion that cannot be finally pinned down, but requires a broad view (Hughes et al., 2006a). The fuller description of us as persons – a description that according to the account being proposed remains valid even in severe dementia – includes our embodied agency (Aquilina and Hughes, 2006). The notion of agency links to autonomy and it might be thought that this is the central notion in connection with advance directives. They are, after all, a way to exercise autonomous choice ahead of a time when it is otherwise no longer possible. However, it is situated embodied agency (Hughes, 2001), which stresses the extent to which our agency is circumscribed by the realities that surround us as individuals. This is the caveat to which I had promised to return. It might have sounded as if all we had to do to make the morally correct decision was to understand the person’s story. But necessarily the person’s story is also located in a multitude of fields. The person might yet be evil or ill, so that we can neither say that just any story has to be accepted, nor any ending. Meanwhile, the notion of being embodied must not be understood in too facile a fashion. In severe dementia it increasingly becomes the only way in which the person’s subjectivity can be expressed (Matthews, 2006). It may indeed be that we have to interpret bodily movements as being meaningful within a particular context. “Even in advanced dementia, when rational, verbal, and emotional communication is largely absent, there are still communicative methods of importance left. The only way to communicate with these patients is via their body. This means

that one must explicitly pay attention to the bodily way in which persons with dementia ‘are in the world’” (Dekkers, 2004). Thus, to understand whether the ending is authentic, we need to be attuned to the normative nature of the person’s narrative and this will involve some form of engagement with the individual’s nature as an embodied agent situated in multifarious and potentially uncumscribable fields. The more such an engagement has been realized, the more likely it is that decisions at the end of the person’s life will be made in a morally appropriate manner. Where, however, does this leave the advance directive? Inasmuch as the advance directive reflects the normative nature of the individual’s narrative, to that extent it will be useful. But this entails that a judgement needs to be made about the standing of the advance directive against the much richer background of the person’s whole life. In the UK, a Government discussion paper (Who Decides?) some years ago put it this way: “The advance statement is not … to be seen in isolation, but against a background of doctor/ patient dialogue and the involvement of other carers who may be able to give an insight as to what the patient would want in the particular circumstances of the case” (Lord Chancellor’s Department, 1997). This view seems to be in keeping with the views of some of those who advocate the importance of a narrative understanding. “From a narrative perspective, a person’s identity is formed in stories, which both express and create the unity of a person’s life. As stories, advance directives presuppose the unity of the patient’s life, and try to contribute to that unity, not by making the different phases identical, but by trying to create a meaningful whole which covers all of them” (Widdershoven and Berghmans, 2001a).

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This view does not make life easier for the decisionmaker; it increases the burden in that it highlights the need for these practical judgements to be made with the greatest of care, involving interpretation of a whole raft of potential factors. But the unpacking of personhood provides us with the connection we were looking for between the past and the present, because the agent (whose autonomous decisions we should like to respect) is embodied and situated. The person’s bodily history and location in a story, which helps to constitute his or her self, is the connection between the past and the present. The person’s situatedness is such that the present cannot be interpreted in ignorance of the past and the past cannot ignore the realities of the present. Our excursion into the underpinning nature of personhood, therefore, leads us to see the advance directive in context. The broader view makes plain the continuing ethical imperative that decisions at the end of a person’s life, even with an advance directive, ought still to be regarded as problematic rather than in any sense run of the mill. Precisely because of the complexities around the notion of personhood in dementia (Hughes et al., 2006b), these decisions cannot be taken in a light minded fashion.

4 Judging advance directives Having considered the aim of advance directives within the broader context of personhood, let us return to the notion of competence. What should be the criteria by which a judgement about my competence to complete an advance directive should be made? In England and Wales, from April 2007, the simple answer is supplied by the Mental Capacity Act 2005. Setting aside the important principles that capacity must be presumed and so on, the criteria that have to be fulfilled to state that a person has the capacity to make a decision are that he or she can recall, understand and weigh up the material information and communicate the decision. If we ignore ( for now) the point that these rather objective factual-looking criteria yet conceal subjective evaluative judgements

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(especially as regards what it might be for the person to weigh things up), the matter looks straightforward. If I can recall and understand that what I am now doing is stating that if, in the context of severe dementia, I were to stop eating I would not wish to be fed by any artificial means, and if I am able to demonstrate that I can communicate and weigh up the pros and cons of this decision, then I have the capacity to make the advance directive to this effect. On the face of it this does not seem to raise enormous problems for assessing competence. However, in the Mental Capacity Act 2005 (and I am presuming that legislation in other jurisdictions would raise similar issues) the details concerning advance decisions make a difference in terms of what the person making the advance refusal of treatment needs to understand. The main point is that the advance directive must be specific and it can only come into effect under the very specific circumstances envisaged. So what if, even in the context of severe dementia, I were to stop eating for what seemed likely to be a transient period? Perhaps an intercurrent illness means that I am in too poor a condition to eat and without artificial feeding I might die, but I am more likely just to be ill for longer. Was this the sort of situation I had in mind when I completed the advance directive? If not, can it still be said that I was competent to make the advance directive that I did? If it was what I had in mind, but I did not stipulate it, does that in itself show a lack of capacity (or was I presuming that people I trust might make the finer decisions for me)? It might be tempting to try to come up with an example where there could be less room for equivocation, cardiopulmonary resuscitation (CPR) for instance. Say I stipulate that I would never wish to receive CPR under any circumstances, how should this be interpreted? If I have made this advance directive today, whilst fit and well, and then I am involved in an accident tomorrow, this is not a circumstance that I might have foreseen and there may well be reasons, therefore, for doubting that I want the advance refusal to be honoured. Of course, there may be obvious reasons for believing that this is precisely the sort of


circumstance that I had in mind; but this is to say that we need a bigger picture: what did I mean or intend when I wrote the advance directive? If I were to write such a broad advance refusal, could it be said that I had capacity to do so if there was no evidence that I had considered such possibilities? Even if I were to stipulate that in the context of moderate to severe dementia I did not wish to have CPR, would I need to show that I knew what moderate to severe dementia might be? Otherwise, how could I be proclaimed competent to make this decision? Say that I did stipulate what I meant by moderate to severe dementia, but that when it came to it I did not seem to be in the state that I had envisaged I would be in when I said that I was against CPR, it is clear that on this ground the advance directive could be declared invalid. But does this also show that I was incompetent to make this specific advance decision? I should say, to be clear, that my inclination in response to the questions I have posed is to equivocate. In other words, under some circumstances it might seem right to honour the advance directive and in other circumstances right to ignore it. Similarly, whether or not it would be appropriate to say that I was incompetent to complete the advance directive would require careful judgement. What would be required would be the broader perspective. This is where being attuned to the normative nature of the person’s narrative, engaging with the person as a situated individual, comes into play. Seeing the advance directive as thus embedded emphasizes the need for interpretation. It also suggests that judging the requisite competence to complete an advance directive must be a matter of judging that the person making the advance directive is acting authentically. The conceptual links between authenticity and a person’s identity are complex (Radden, 1996). Nevertheless, there is a clear sense in which for a story to be authentic the ending should ring true (like an “authentic cadence” in music). The normative nature of the person’s narrative ensures that certain endings will not be true and the point of an advance directive is to guard against such dissonance. Judging an advance directive, therefore,

requires the broad narrative view of personhood and judging a person’s competence to complete an advance directive should entail an evaluative interpretation concerning the authenticity of the decisions being made. The question is not solely a factual one about cognitive performance, therefore, but is also one in which value judgements must play a role. In short, for good conceptual reasons, our attempt to ignore values in the assessment of capacity has failed – and rightly so!

5 Judging competence Now all of this is not without consequence. For instance, doctors have concerns about implementing advance directives and one potential remedy might be if there were more certainty about the competence with which advance directives are completed (Srebnik et al., 2004). In a review of instruments to assess decisionmaking capacity, Vellinga et al. (2004a) identified two papers that assessed competence to complete an advance directive. The first, by Barton et al. (1996) made use of the Hopkins Competency Assessment Test (HCAT). The second study involved a semi-structured interview using case vignettes (Fazel et al., 1999). Fazel et al. (1999) pointed out that an earlier study (Silberfeld et al., 1993) had suggested criteria to test the capacity to complete an advance directive, focusing on whether the person could understand its nature and purpose. But, as Fazel et al. (1999) comment, this “does not assess whether an individual is capable of understanding actual possible future clinical situations”; nor does the HCAT, also used by Janofsky et al. (1992). As Fazel et al. (1999) state, understanding actual possible future clinical situations “is critical to competently completing an advance directive”. Vellinga et al. (2004a) agree: “Because advance directives consider hypothetical future situations by definition, the hypothetical character of vignettes is very similar in concept”. A more recent study has used a semi-structured tool, the Competence Assessment Tool for Psychi-

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atric Advance Directives (CAT-PAD), to assess competence to complete an advance directive (Srebnik et al., 2004). The study suggests that the instrument has reasonable psychometric properties and that most of a population of people with severe mental health problems (with a mean age of 41.9 ± 9.3 years) were competent to complete an advance directive. Recognizing that there is no consensus on the degree of capacity required to write an advance directive, the authors of this study were against the use of rigid cutoff scores. They recommended instead that the individual abilities tested should be considered, because failure in one component (understanding, reasoning, appreciation or evidencing a choice) might render the person incompetent. In response to this paper, several points need to be made. First, exactly how realistic the choice presented to the participants was is in question. It was about whether or not someone should be hospitalized; but whether this was a realistic choice for the participants is not clear. This is important because of evidence that whether the situation to be discussed is realistic or not might have an effect on decisionmaking capacities (Vellinga et al., 2005). Secondly, we have already noted that people’s views change, for instance in the context of worsening cognitive function (Fazel et al., 2000). Although it makes sense to complete an advance directive early, the worry about competence will often arise later when cognitive impairment is more of a reality and the relevance of Srebnik et al. (2004) to this population is questionable. Finally, as the authors themselves recognize, the CAT-PAD focuses on cognitive function related to decision-making, whereas volitional factors need to be considered too. But these studies raise other difficulties. For instance, there is good evidence that different physicians, and physicians compared to family members, and both of these groups in comparison with a vignette, can reach statistically different opinions about competence (Vellinga et al., 2004b). It may well be that context is very important: this was certainly the conclusion I reached above on conceptual grounds, but it is also seen in Vellinga et al. (2004b)

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where there was better agreement between the assessment of competence as judged by a vignette approach and as judged by the family compared to the judgements of physicians. But the physicians were more lenient, tending to regard people as competent. The interesting point is that there is no objective way to judge between these groups. Hence, the judgement about competence needs itself to be seen as a situated judgement, in which the importance of values is recognized. The task then becomes one of carefully negotiating between differing values, which is the essence of values-based practice (Fulford, 2004). Moreover, this sort of negotiation, which must start with an attempt to understand the other’s meaning, is relevant even at the stage of assessing competency to complete the advance directive in the first place. Furthermore, whilst attempting to assess an individual’s understanding of “actual possible future clinical situations” (Fazel et al., 1999), it has to be recalled that what is really at issue is that the person’s present wish should remain his or her settled wish in the future and, therefore, that the requisite competence to complete an advance directive is a matter of judging that the person making the advance directive is acting authentically. This then starts to count against the more legalistic conceptions of an advance directive and instead stresses the communicative nature of the decisions, which might mean that some advance directives should not even be considered (van Delden, 2004).

6 Conclusion Judging competence to complete an advance directive is a matter of judging that the person making the advance directive is acting authentically. I reached this conclusion by considering the end that advance directives aim at: some form of authentic cadence, requiring that those involved are attuned to the person’s life. The view required is a broad one, because persons must be understood as embedded in a variety of fields. Tests to assess competence to complete


an advance directive have to be judged against this broad canvas of individual authenticity. The worry that “authenticity” is itself too hard to pin down and might collapse into some form of paternalistic best interests (Holm, 2001) errs in that it takes “authentic” simply to mean to fit into or continue a pattern. For there will be a variety of ways in which the ending might ring true. Some of these, at least at first blush, will be unexpected. What is required is that the advance directive is regarded, not as a simple rule or legal dictate, but as a way of fostering understanding of “the interpretative and intersubjective aspects of decision-making … [A]s communicative tools, they may … give structure to shared ways of dealing with important aspects of human life” (Widdershoven and Berghmans, 2001b). Just as judging an advance directive requires a broad narrative view of personhood, judging a person’s competence to complete an advance directive must entail an evaluative interpretation concerning the authenticity of the decisions being made. And the basis of this interpretation can only lie in the interconnectivity of our narratives and our shared nature as human beings in the world.

References Aquilina C, Hughes JC (2006) The return of the living dead: agency lost and found? In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind, meaning, and the person. Oxford University Press, Oxford, pp 143–61 Barton CD, Mallik HS, Orr WB, Janofsky JS (1996) Clinicians’ judgment of capacity of nursing home patients to give informed consent. Psychiatr Serv 47: 956–60 Dekkers WJM (2004) Autonomy and the lived body in cases of severe dementia. In: (Purtilo RB, ten Have HAMJ, eds) Ethical foundations of palliative care for Alzheimer’s disease. Johns Hopkins University Press, Baltimore and London, pp 115–30 Fazel S, Hope T, Jacoby R (1999) Assessment of competence to complete advance directives: validation of a patient centred approach. Br Med J 318: 493–97 Fazel S, Hope T, Jacoby R (2000) Effects of cognitive impairment and premorbid intelligence on treatment preferences

for life-sustaining medical therapy. Am J Psychiatry 157: 1009–11 Fulford KWM (Bill) (2004) Facts/values. Ten principles of values-based medicine. In: (Radden J, ed) The philosophy of psychiatry: a companion. Oxford University Press, Oxford, pp 205–34 Holm S (2001) Autonomy, authenticity, or best interest: everyday decision-making and persons with dementia. Med Health Care Philos 4: 153–59 Hughes JC (2001) Views of the person with dementia. J Med Ethics 27: 86–91 Hughes JC, Louw SJ, Sabat SR (2006a) Seeing whole. In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind, meaning, and the person. Oxford University Press, Oxford, pp 1–39 Hughes JC, Louw SJ, Sabat SR (eds) (2006b) Dementia: mind, meaning, and the person. Oxford, Oxford University Press Janofsky JS, McCarthy RJ, Folstein MF (1992) The Hopkins competency assessment test: a brief method for evaluating patients’ capacity to give informed consent. Hosp Comm Psych 43: 132–36 Lord Chancellor’s Department (1997) Who decides? Making decisions on behalf of mentally incapacitated adults. HMSO, London Matthews E (2006) Dementia and the identity of the person. In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind, meaning, and the person. Oxford University Press, Oxford, pp 163–77 Radden J (1996) Divided minds and successive selves: ethical issues in disorders of identity and personality. The MIT Press, Cambridge, MA Silberfeld M, Nash C, Singer PA (1993) Capacity to complete an advance directive. J Am Geriatr Soc 41: 1141–43 Srebnik D, Appelbaum PS, Russo J (2004) Assessing competence to complete psychiatric advance directives with the competence assessment tool for psychiatric advance directives. Compr Psychiatry 45: 239–45 van Delden JJM (2004) The unfeasibility of requests for euthanasia in advance directives. J Med Ethics 30: 447–52 Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C (2004a) Instruments to assess decision-making capacity: an overview. Int Psychogeriatr 16: 397–19 Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C (2004b) Competence to consent to treatment of geriatric patients: judgements of physicians, family members and the vignette method. Int J Geriatr Psychiatry 19: 645–54 Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C (2005) Decision-making capacity of elderly patients assessed through the vignette method: imagination or reality? Aging Ment Health 9: 40–48

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Vollmann J (2001) Advance directives in patients with Alzheimer’s disease: ethical and clinical considerations. Med Health Care Philos 4: 161–67 Widdershoven G, Berghmans R (2001a) Advance directives in psychiatric care: a narrative approach. J Med Ethics 27: 92–97

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Widdershoven GAM, Berghmans RLP (2001b) Advance directives in dementia care: from instructions to instruments. Patient Education and Counselling 44: 179–86 Wiggins D (1987) The person as object of science, as subject of experience, and as locus of value. In: (Peacocke A and Gillett G, eds) Persons and personality: a contemporary inquiry. Blackwell, Oxford, pp 56–74

Chapter 9

INFORMED CONSENT IN DEMENTIA RESEARCH Anco vd Vorm and Marcel GM Olde Rikkert

The process of informed consent is a topic of ethical debate because there may be a conflict of interests between researchers and eligible subjects. International rules, such as the Declaration of Helsinki (last revision, 1989), the Nuremberg Code (1947) and the International Covenant on Civil and Political Rights of the United Nations (1966), require free and informed consent of research subjects. Recently, much has been written about informed consent procedures for medical research, but empirical data on how this complicated process might be optimized in research on elderly subjects are scarce. International legislation requires that human subjects must give truly informed and free consent before participating in medical research. Despite great similarities between national laws and internationally accepted ethical codes, research practice is still highly heterogeneous, especially in dementia research, which has to deal with the complex issue of decline of capacity to consent (Olde Rikkert et al., 2005). To reach a more uniform approach, more attention to the informed consent procedure is required in demented subjects, even more so because they often also suffer from problems in hearing, speech, and vision. Assessment of the capacity to consent often is the first step in research in subjects with known cognitive decline. Subjects judged as incapable to consent must be excluded or consent by a third party (proxy) must be obtained, if this is possible according to applicable legislation. However, up till now there are no well- accepted standards for uniformly determining capacity to consent (Hearnshaw, 2004). Next, the information given should be matched to the reading ability and comprehension of the elderly subjects studied and the proxies involved (Appelbaum

and Grisso, 2001). This also requires an assessment of mental status, hearing, speech and vision beforehand.

1 Introduction The approval of a study by the responsible ethics committee should guarantee, amongst others, quality control of this complex consent procedure. However, ethical review boards rarely specifically address the procedure used for assessment of capacity to consent. In papers written on research in the elderly, the issue of capacity to consent procedures is detailed specifically in only very few of the studies (Olde Rikkert et al., 1996). In our survey of the literature, the frequency in which information on informed consent by the responsible ethics committee were published was unexpectedly low, though the general public, editors of scientific journals, granting research counsels, and patient organisations emphasize the importance of this subject. An important new law in this field is the last and recently amended version of the Guidelines for Good Clinical Practice (GCP). These guidelines are now formally accepted as the new EU Directive (Directive 2001/20/EC), after having been approved of by the European Committee in December 2000. From May 2004 this guideline was implemented in all EU countries. The new GCP guideline increases the restrictions for research on subjects who are incompetent to consent. However, this new GCP-directive introduces multiple terms that may be interpreted and implemented in many different ways (e.g., research “directly related to a debilitating condition”,

Chapter 9: A. vd Vorm and G.M. Olde Rikkert

“life threatening condition” and “grounds for expecting benefit”). This may even increase the heterogeneity both in the ethics committee’s conclusions on research in dementia and in the professional’s judgements on capacity to consent, instead of diminishing the differences in interpretation. However, the growing attention to informed consent by regulatory bodies, requires researchers to invest much time, energy and creativity in informing elderly subjects appropriately to allow for free and autonomous decisions. Ultimately, informed consent has to be obtained from a sufficient number of subjects to meet sample size requirements. In this chapter we will give an overview on how this important goal can be reached efficiently in dementia research, to enable good quality research with high clinical relevance for dementia care, while at the same time safeguarding the interests, legal and moral rights of these vulnerable subjects with cognitive decline.

2 Epidemiology of consent To explain highly sophisticated research techniques as commonly used in current medical research, to dementia patients, who are generally born in an era in which medicine was mostly “handmade”, is a formidable task. The omnipresence of cognitive deficits, often accompanied by visual, auditory and language deficits in this population constrains acquiring, understanding and adequately weighing the information provided by the researcher. Much has been published on the informed consent issue with regard to geriatric research and on specific subtopics such as: decision making capacity, voluntariness, disclosure, understanding, consent forms, authorization policies, and others (e.g., see review of Sugarman et al., 1998). Diminished understanding of informed consent information was associated with older age and fewer years of education. Older age was also associated with decreased participation in research. Elderly patients and patients with below average IQ, impaired cognitive functions, and an external locus of control

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had poor information recall of the imported issues related to the research (Lavelle et al., 1993). However, specific studies on the issues of informed consent in dementia research are scarce. The firmest conclusion from such empirical studies is that the diagnosis of dementia does not tell very much about capacity to consent. Capacity to consent depends both on the cognitive capacity of the subject and the complexity of the study. In a longitudinal study of healthy aging and dementia, with both demented (n = 250) and nondemented (n = 165) participants, all non-demented and very mildly demented participants and 92% of mildly demented participants provided a sufficient number of correct answers for the test of capacity to consent (Buckles et al., 2003). Demented individuals, in very mild and mild stages of dementia, understood informed consent information for this non-therapeutic study. In general, understanding notably declined in the moderate stage of dementia. Because of the changes in time in capacity to consent in dementia subjects, there is a great need for valid, reliable and efficient instruments to assess capacity to consent, which we will address next.

3 Assessing informed consent The decision whether a potential subject is competent or incompetent is a necessary and crucial part of conducting medical research in the elderly. The assessment of competency is required by the legal and ethical frameworks in which the research occurs. It is well known that the diagnosis of dementia does not mean that a person is incompetent to consent. Therefore, both in clinical practice and in dementia research it becomes increasingly important to be able to judge the capacity to consent on an individual basis. Several instruments are available for the clinical evaluation of competency to consent. Classically what is needed at least for competent judgement is summarized as: (1) ability to evidence a choice, (2) ability to make a reasonable outcome of choice, (3) ability to

Informed consent in dementia research

understand information, (4) ability to manipulate information, (5) ability to appreciate the situation and its consequences. In a recent review Vellinga et al. showed that all well-validated instruments used to assess competency to consent aimed at covering these topics (Vellinga et al., 2004). The best-validated instrument currently available proved to be the MacArthur Competency Assessment instrument, which is available both for research aims and for clinical practice. The MacCAT-CR is the instrument for the assessment of decision-making capacities to participate in clinical research. It was developed by Applebaum and Grisso, with support from the Research Network on Mental Health and the Law of the MacArthur Foundation (Grisso et al., 1997). A MacCAT version for treatment related decision making is also available (MacCAT-T), as well as a version to assess voting capacity. All three MacCAT instruments are based on asking critical questions to the subject whose competency should be judged. These questions address understanding of the research information, reasoning, appreciation of the choices, and finally making a choice. The MacCAT instruments showed good validity and reliability (Karlawish et al., 2002; Vellinga et al., 2004). Only the feasibility for wide spread use in clinical practice is questionable, because one needs 30–60 min to apply the instrument, and more importantly, it will take training and specific expertise before the MacCATinstruments can be used. However, the central idea of the MacCAT instruments, which consists of asking structured questions crucial for competency to consent, can be applied in most consent procedures rather easily. A domain, which is not covered by the MacCAT and all other assessment instruments, is the moral capacity of a subject, nor the emotional ability to make a sound decision, which is in line with the life history of a subject. Moral capacity overlaps with decision-making capacity, but is not fully contained by it. Cognitively impaired persons, judged as incapable to consent by the available instruments, for example subjects with dementia, may still be able to make morally responsible decisions, based on a remaining

sense of both decision making and their personal history. A full discussion of the field of moral capacity to consent, which is still highly debated, is beyond the scope of this chapter. However, it is clear that depressed elderly subjects and elderly with personality disorders, for whom personal history is often complex, require special geriatric psychiatry expertise both in the assessment of capacity to consent, and in the consent procedure as a whole. To conclude, in a proper and state of the art assessment of the capacity to consent to research, the application of the best that competency assessment instruments brought us (if possible the Mac-CAT-CR or second best asking the right questions to check for competency on specific issues), should be combined with knowledge of the patient’s hopes, beliefs and personal history. Only weighing and evaluating the results of the formal assessment of capacity to consent and the evaluation of personal values, can result in a valid answer to the question whether a subject is fully competent to consent in the legal sense of the word. Next, the invasiveness, risks, and burden on the one hand, and the profits of the study on the other hand, should be weighed carefully, to determine the level of capacity to consent needed for a specific study. The more risky and burdensome, the higher the required standards of consent will have to be. The more profit and the lower the burden of a study, the lower the standards of capacity to consent may be. This is called the principle of proportionality of the criterion of capacity to consent, which is a cornerstone of proper research ethics (Table 1). Finally, combining all these elements will guide the researcher the way out in the clinical dilemma of Table 1. The increase in emphasis on the quality of informed consent and the capacity to consent needed for participation is proportional to the risks and burden of a study Research

Minimal risk/ burden

High risk/ burden

Non-therapeutic

+++

++++

Therapeutic

+

++

Note: + to ++++: indicate that higher standards of capacity to consent are required

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whether or not a subject with cognitive decline is capable to consent. The next challenge is how to involve patients with cognitive decline as much as possible in decision making, despite decline or even absence of formal competency to consent.

prove research participants’ understanding (Flory and Emanuel, 2004). There is no direct reason to alter this conclusion for dementia research, but more research is highly needed here.

5 Way out in research practice 4 Improving Informed consent Helping the subject to understand research information as fully as possible, and ascertaining how well the subject understands it, is the first prerequisite for a valid assessment of informed consent. Important conditions to reach these goals are extensive time for the information process, and matching consent material in format and presentation to the cognitive, visual and hearing capacities of frail elderly patients. So far, most authors have focused on all kinds of visual and hearing aids, such as: pictures, vignettes, storybooks and audio- or videotapes. However, Tymchuk and Ouslander showed that these aids proved a distraction rather than an aid for elderly subjects (Tymchuk and Ouslander, 1990). Educational training was also suggested as a method of enhancing decision-making capacity. Awareness or if possible experience with the diagnostic procedures, treatments or research methods, which are part of the study aimed for, will improve competency to consent, especially in subjects with cognitive decline and dementia (Olde Rikkert et al., 1997). Effective strategies to improve the understanding of informed consent information should be considered when designing materials, forms, policies, and procedures for obtaining informed consent. Other than empirical research that has investigated disclosure and understanding of informed consent information, little or no systematic research has examined how to improve informed consent in dementia research. Efforts to improve understanding through the use of multimedia and enhanced consent forms have had only limited success (Flory and Emanuel, 2004). Having a team member or a neutral spend more time talking one-by-one to study participants appears to be the most effective available way to im-

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To research a sufficient quality of informed consent and to stimulate and not frustrate dementia research a joined task force is needed from researchers, journal editors, ethical review boards, politicians, grant givers and Alzheimer’s disease societies. Alzheimer Europe made a clear policy standard on the research ethics in dementia research including informed consent issues (Appendix). Here we addressed the challenge that researchers have to meet when acquiring informed consent from demented subjects in an ethically sound manner. Researchers will not only have to deal with dilemma’s in trial design and outcome variables, but also have to invest time and effort in the acquisition of a proper informed consent, after a more formalised and probably witnessed assessment of the capacity to consent. Currently, researchers should be advised to adopt a step-wise procedure, which starts with sufficient time and effort in the handing over the information on the study aimed for. If feasible, a trial run of the research aimed for might help to improve understanding of the study procedures in demented and depressed subjects as well as in subjects without psychogeriatric illnesses. This is important because understanding of research information is a prerequisite for weighing and appreciating the risks and benefits of a study. The next step consists of asking whether the fundamental issues needed for informed consent are met by a potential research subject. The quality of consent which is needed, is directly proportional to the risk and burden of the study on the one hand, and the profits on the other. In such a way, informed consent can be judged irrespective of the diagnosis made. Generally, mentally incompetent subjects should not be included in research, unless the research is


judged necessary to promote the health of the population represented and this research cannot be performed on legally competent persons. Moreover, such research should be possible only if the physical and mental condition that prevents obtaining informed consent is a necessary characteristic of the research population. Special precautions are necessary if the subjects with cognitive decline are judged to be incapable to consent, and did not sign an advance directive in which they state to want to participate in dementia research. For a research subject who is under legal guardianship, the investigator must obtain informed consent from the legally authorized representative in accordance with applicable law. This should even be added to a positive advance directive. In general, for dementia research we advocate a dual consent procedure, in which the researchers acquires consent of the patient, if capable to consent, assent (i.e., agreement as far as the study is understood and weighed) of the patients who are judged not ( fully) capable to consent, and informed consent by the proxy. In the literature a lot of terms are used to describe the procedure in which a third party consents for someone else, most often a relative. “Substituted judgment”, “proxy consent” and “surrogate consent” are used to describe this process. Although there may be differences between them, the main characteristics are (1) that a person consents for someone else and (2) that this method of soliciting consent is used to extend the subject’s autonomy. Several arguments can be given in favour of third party consent. Most arguments are in some way related to the argument that third party consent respects the autonomy of the patient/research subject as much as possible. A person other than patient/research subject consents on behalf of him/her. By this means the research subject can to some degree participate in the decision via his/her “surrogate”. In general, persons who have most interests – for example because they are responsible for daily care – are most involved in the decision. These people who are caring for the patient probably (more likely than others) want the best for the patient (Hardwig, 1993).

Those who are close to the patient are generally most knowledgeable about what the patient would have wanted (Hardwig, 1993). Kim et al. (2005) showed that participants in a research study did not shift the burden of research onto others (whether society or loved ones). In addition, it was observed that respondents are cautious in their attitude when they are responsible for their loved ones. In sum, researchers have to meet the serious challenge of an adequate informed consent procedure, in case they want to carry out studies on the vulnerable subjects with cognitive decline or with dementia. Apart from the obligations expressed by research councils’ and journals’ guidelines, researchers should be fully aware of the societal and scientific responsibilities they bear in this type of research with fragile subjects. It is highly relevant that relevant details of the assessment of capacity to consent and of special measures applied in informing the elderly are published as well. A good consent procedure should be regarded as important as the research design, or the selection of the intervention or the outcome measures in dementia research, by all professionals involved. Ethical research committees and the patients’ and carers’ societies are in the best positions to help researchers meet the great challenge of relevant, but at the same time ethically sound dementia research.

Appendix Summary of position paper on research with people with dementia (www.AlzheimerEurope.com) The present paper constitutes the input of Alzheimer Europe and its member organisations to the ongoing discussions about the participation of people with dementia in research and in particular the Council of Europe Convention on Biomedicine and Human Rights and the Draft Additional Protocol to the Convention on Biomedical Research. For the participation of people with dementia in clinical trials, the organisation refers to the specific position paper it has adopted with regard to this question. Alzheimer Europe would like to recall a few general principles which guide this present response:

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• •

• •

•

A diagnosis of dementia does not in itself constitute a lack of legal capacity. Capacity is not an all or nothing affair. People with dementia should therefore be involved in decisions concerning research even if they are considered “unable to consent”. People with dementia have a right to participate in research, should they so desire. People with dementia should be encouraged to write advance directives covering the issue of participation in research. Subject to the fulfilment of certain conditions, a legal representative should be allowed to consent to participate in research on behalf of a person with dementia who is no longer able to consent him/herself (provided that they take into account his/her past and present wishes).

On the basis of these principles, Alzheimer Europe has developed the following position with regard to the participation of people with dementia in research: •

•

•

•

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In the early stages of the disease, people with dementia can themselves consent to research or declare their willingness to participate in research in an advance directive – irrespective of whether such research is likely to entail a direct personal benefit. A doctor with the relevant expertise and who is not linked to the research should assess the level of capacity of the person with dementia in order to ensure that s/he has sufficient mental capacity to take such a decision and is fully aware of the consequences. Legal representatives should be able to consent on behalf of people with dementia to participate in research, if the following main conditions are met: the potential benefit for the person’s health is clear– ly greater than the possible risks; the risk of causing discomfort or distress is mini– mal; the research has been approved by an independent ethics committee; the same results could not be obtained with other – subjects; the legal representative does not benefit financially – from the decision; s/he has been specifically authorised to give con– sent by a court or the person with dementia; the necessary safeguards have been taken to pro– tect the privacy of the person with dementia and to respect his/her dignity. In all cases, an independent adviser should be appointed with responsibility for the safety and welfare of the participants.

Based on its current information, Alzheimer Europe does not endorse the participation of people with dementia in research without a potential benefit for the participants unless the person with dementia decided to participate him/herself and had sufficient capacity to make such a decision. Such decision could have been stated in an advance directive.

References Appelbaum PS, Grisso T, MacCat-CR (2001) The MacArthur Competence Assessment tool for clinical research. Professional Research Press, Sarasota, USA Buckles VD, Powlishta KK, Palmer JL, Coats M, Hosto T, Buckley A, Morris JC (2003) Understanding of informed consent by demented individuals. Neurology 61(12): 1662– 66 Flory J, Emanuel E (2004) Interventions to improve participants’ understanding in informed consent for research: a systematic review. JAMA 292: 1593–601 Grisso T, Appelbaum PS, Hill-Fotouhi C (1997) The MacCAT-T: a clinical tool to assess patients’ capacities to make treatment decisions. Psychiatr Serv 48: 1415–19 Hardwig J (1993) The problem of proxies with interests of their own. J Clin Ethics 4: 20–27 Hearnshaw H (2004) Variations, across eleven European countries, in research ethics requirements for non-invasive, interventional study. BMJ 327: 140–41 Karlawish JHT, Casarett DJ, James BD (2002) Alzheimer’s disease patients’and caregivers capacity, competency and reasons to enrol in early-phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 50: 2019–24 Kim SYH, Kim HM, McCallum C, Tariot PN (2005) What do people at risk for Alzheimer’s disease think about surrogate consent for research. Neurology 65: 1395–1401 Lavelle-Jones C, Byrne DJ, Rice P, Cuschieri A (1993) Factors affecting quality of informed consent. BMJ 306: 885– 90 Olde Rikkert MGM, ten Have H, Hoefnagels WHL (1996) Informed consent in biomedical studies on ageing: survey of four journals. BMJ 313: 1117 Olde Rikkert MGM, van den Bercken JHL, ten Have HAMJ, Hoefnagels WHL (1997) Experienced consent in geriatric research. A new method to optimise the capacity to consent in frail elderly subjects. J Med Ethics 23: 271– 76 Olde Rikkert MGM, Lauque S, Frolich L, Vellas B, Dekkers W (2005) The practice of obtaining approval from medical research ethics committees: a comparison within 12 Europe-


an countries for a descriptive study on acetylcholinesterase inhibitors in Alzheimer’s dementia. Eur J Neurol 12: 212– 17 Sugarman J, McCrory DC, Hubal RC (1998) Getting meaningful informed consent from older adults: a structured literature review of empirical research. J Am Geriatr Soc 46: 517–24

Tymchuk AJ, Ouslander JG (1990) Optimizing the informed consent process with elderly people. Educ Geront 16: 245– 57 Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C (2004) Instruments to assess decision-making capacity: an overview. Int Psychogeriatrics 16: 397–419

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Chapter 10

ASSESSMENT OF FITNESS TO DRIVE, POSSESSION OF PROFESSIONAL DRIVERS’ LICENSE, POSSESSION OF FIREARMS, AND PILOT’S CERTIFICATE IN CLIENTS WITH DEMENTING CONDITIONS Kurt Johansson and Catarina Lundberg

1 Introduction There is a high degree of likelihood that impaired cognitive functions affect traffic safety and traffic behaviour. The risk of crash involvement may increase due to the cognitively impaired driver’s own mistakes or his/her diminished ability to parry the mistakes of other road users. Therefore, it is important, when assessing memory impairment or dementia, also to consider the issue of automobile driving, operating trains or aircraft etc. The ability to take in and correctly process visual input is also an important ability for hunters, which raises the issue of the possession and use of firearms. Psychotic symptoms in a demented person entail a clear risk of shooting at imaginary pursuers, or a depressed person may use the firearm to commit suicide. Impaired cognitive functions do not increase the crash risk only of drivers of automobiles, trains and aircraft, but, probably also for drivers of mopeds and bicycles. Increased instability when riding a bicycle is not seldom reported by patients at our memory clinic (KJ, personal experience), but has not been systematically investigated. Judgement and insight are important functions in the perspective of adaptation or restriction of activities. One could say that a person’s unawareness of his or her own limitations makes it impossible to compensate for these limitations and therefore does not lead to a limitation or cessation of driving. From clinical experience we know that a cognitively impaired person lacking awareness views himor herself as the good driver he or she has “always” been. When relatives observe a deterioration of driv-

ing capacity and communicate this to the driver, this often leads to a heated discussion. All the arguments from the relatives are rejected and the driver is left with a feeling of anger and resentment, but does not make any changes in his or her driving. On the other hand, relatives often can take measures to prevent access to the car, for example by manipulating the engine (removing the cable to the distributor etc.), or even selling the car. But we have also seen some cases where demented persons have bought a new car instead of the “broken-down” old one. But, in the opinion of the present authors, driving should have been terminated a long time before the intervention of family members because of an excessive crash risk. However, there remains an important role for relatives: that of preventing the patient from gaining access to a motor vehicle. A study by Hakamies-Blomqvist et al. (1996) showed that the Finnish system of medically screening all license holders at the age of 70 did not improve traffic safety. On the contrary, there was even evidence that traffic safety was affected negatively because potentially safe drivers stopped driving and started using less safe modes of travel (by foot or bicycle), thus becoming unprotected road users. One possible explanation for this could be that securityoriented drivers stop driving, but that those lacking awareness of their impairments renew their licenses and keep on driving with an increased crash risk. Together with the results from a study by Johansson and co-workers (1996), showing that a standard medical examination cannot distinguish drivers with collisions from either controls or driver with other of-

Chapter 10: K. Johansson and C. Lundberg

fences, these findings caused the Finnish government to introduce a new law making the reporting of medically unfit drivers mandatory for physicians. In some countries, such as Sweden and Finland, physicians have the obligation to report unfit drivers. In other countries, such as Spain, there is a regular medical screening of older drivers. In some countries, physicians must also report unfit firearm holders. A screening procedure concerning all older drivers/license holders has advantages as well as disadvantages. Among the advantages is the view that the procedure is fair: all license holders are targeted. In addition, for countries having an excess of physicians, this gives job opportunities. Among the disadvantages is the fact that there are no really relevant selection methods for screening (whether age-based or diagnosis-based). In addition, as shown later in this chapter, a useful cognitive screening battery does not (yet) exist. In addition, screening can be viewed as a waste of resources, because the majority of screened drivers are healthy, which makes the cost-benefit of screening low. The cost of the screening procedure places a burden either on the individual or on society (both of whom have limited resources). As an alternative to general screening at regular intervals, it might be possible to carry out a medical/cognitive evaluation of those drivers who are involved in car crashes. This would not only offer the opportunity to detect cognitive impairment, but also other medical conditions influencing traffic safety. The EC directive on driver licensing (2006/126/ EC, Addendum III) does not mention dementia, nor does it give any guidelines concerning cognitive impairments. Regulations concerning drivers with cognitive impairment or dementia differ between states. Ideally, regulations should be based on a political decision as to which level of elevated crash risk that can be tolerated by society. (For example, it might be argued that persons with the disease X, who have twice the risk of healthy drivers of their own age, can still be accepted in traffic, but that persons with the disease Y, whose risk if multiplied by eight compared to healthy drivers, should not be allowed to drive.) How-

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ever, risk estimates presented in scientific literature are not yet sufficient to constitute a base for such decisions. The consensus meeting on Alzheimer and Driving in 1994 (Johansson and Lundberg, 1997) made the recommendation that individuals with moderate or severe dementia should not drive. Some authors argue that individuals with the diagnosis of dementia should not drive (Dubinsky et al., 2000). And finally, we also know, that individuals in a “preclinical state” of dementia are overinvolved in crashes (Johansson et al., 1997; Johansson et al., 1996). In consequence, each member state of the EC must decide on its own guidelines or regulations on dementia and driving. In Sweden, for example, persons with dementia are not allowed to hold driver’s licenses in group II. In group I, however, possession can be allowed if the dementia is in a mild phase and certain requirements on cognitive functions are met (for details, see chap. 10 in http://www.vv.se/filer/4796/9889eng000915.pdf).

2 The assessment of dementia or cognitive impairments with respect to automobile driving When assessing persons with symptoms of dementia or cognitive impairments, the health professional must also take into consideration the possession of a driver’s license etc. In addition, demands on health and driving fitness are generally higher for holders of licenses of higher categories (group II). This is reasonable, since professional drivers have a higher exposure to crash risk than drivers of private cars. Whether local regulations require it or not, it is advisable to document the possession of licenses of all types in the patient file together with advice or recommendations given to the patient etc. Concerning the assessment of fitness to drive, five different levels of assessment can be distinguished. (1) A clinical assessment, based on the normal assessment procedure for memory impairment/ dementia.

Assessment of fitness to drive, possession of professional drivers’ license…

(2) Certain tests developed for the assessment of fitness to drive (3) Neuropsychological tests intended to assess driving fitness (4) Assessment in a driving simulator (5) An in-car, in-traffic assessment Levels 2–5 need specific competencies that are not always available at the “memory clinic” when assessing dementia symptoms. There is no “golden standard” against which to measure the predictive power of different examination methods to determine whether a patient is fit to drive. However an “on-road test” in real traffic is commonly considered as a “golden standard” despite several limitations.

2.1 Clinical evaluation by a physician at the memory/dementia assessment unit Here, the physician or the assessment team has access to all material from the diagnostic procedures (medical history, own observations, different results from tests used, such as the score on the MMSE (Folstein et al., 1975), Clock Drawing Test (Sunderland et al., 1989), and other neuropsychological test results, etc.). Sometimes, there are results from assessments of ADL and IADL, carried out by an occupational therapist. Reports by family members about general cognitive decline and impaired visuospatial ability can sometimes imply a decline in driving ability. A study by Wild and Cotrell (2003) reported that individuals with Alzheimer’s disease are often unreliable in their ratings of their driving skill and that their ratings are systematically higher than those of a professional evaluator. Family members can feel a certain anxiety about driving ability, but tend to underreport specific problems occurring during driving. Many studies express doubts concerning the reliability of family members’ reports on driving ability. In most cases, the memory assessment has resulted not only in a diagnosis, but also a staging of the severity of disease. According to a consensus document (Lundberg et al., 1997), persons with a mod-

erate and severe dementia should not be driving. In Sweden, consequently, medical regulations state that the license of a moderately or severely demented person should be revoked. There are only three studies (Brown et al., 2005; Ott et al., 2005; Fox et al., 1997) where a physician rated the patient’s fitness to drive in comparison to the outcome of an on-road test (ORT). Two of the studies used the same material and one of the physicians participated in both studies. One “very experienced dementia specialist” had 78% correct classifications (pass or fail ORT), as compared to the “lowest performing” one, (a general practitioner) with only 62% correct classifications (Ott et al., 2005). Between 25 and 35% of the patients who were clinically considered as unfit to drive nonetheless passed the ORT. The conclusion in the third study (Fox et al., 1997) is that neither the physician nor the psychologist can predict the outcome of an ORT. Summary A clinical assessment alone, even when performed by an experienced “dementia physician”, does not give sufficiently reliable information on driving fitness in subjects with mild or very mild dementia (due to low specificity). Individuals with dementia of mild/very mild degree or cognitive impairment should therefore be assessed by specialised staff with respect to fitness to drive. Cases of moderate and severe dementia (CDR 2–3 (Morris, 1993) or MMSE ≤18) can be dealt with by any physician and should result in the termination of driving. The possibility of falsely high or false low scores on MMSE must be considered, especially in vascular disease or in cases with high or low premorbid functioning. The experience from previous studies indicates that a clear cutoff score for different tests in mild/ mild dementia, with respect to continued driving, will be difficult to establish, if this is ever the case.

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2.2 Special tests developed for assessment of fitness to drive The SDSA (Stroke Driver Screening Assessment) with its later developed Nordic version (NorSDSA) can be used also to assess individuals with cognitive impairment or dementing conditions. The battery test consists of 4 subtests and yields a summary score, calculated by using given formulas, and this summary score indicates a positive or negative recommendation. The test should be used by occupational therapists and psychologists and a formal education of users is recommended. The UFOV (Useful Field of View) is a PC-based test expressing the result as a levels of crash risk. It takes about 15–20 minutes to administer. The program is self-instructing (in English), but it is recommended that the test leader be an especially trained health professional (preferably an occupational therapist or a psychologist). It should be noted that the PC-based version used is not entirely comparable to the original version (with a very large screen) used in the USA and for the validation studies. SDSA: Published studies exists for stroke, traumatic brain injuries and Parkinson’s disease. For Alzheimer’s disease, there is one study showing a certain ability to discriminate AD patients from controls, but the relation to ORT was not tested. The subtests of SDSA were included in a study by Lincoln et al. (2006), where only the traffic sign recognition test showed a tendency to discriminate between safe and unsafe drivers. UFOV: A meta-analysis from 2005 (Clay et al., 2005) with 8 included studies (all with controls) showed a strong consistency between the studies (correlations between results on the UFOV and car crashes, driving simulator results and results from ORTs, respectively). Only three of the studies included individuals with Alzheimer’s disease (Duchek et al., 1998; Cushman, 1996; Rizzo et al., 1997) and matched controls. One study used the results from a driving simulator and two used the results from an ORT as outcome measures. None of the latter studies has showed that

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the method can predict pass or fail driving result at an ORT in a group of mild or very mild dementia, despite strong correlations between reduction in UFOV and ORT scores. For quite a high proportion of the patients participating in the study by Duchek and coworkers, the UFOV proved too complex. Hence, the missing data relating to those individuals do not necessarily indicate that their useful field of view was restricted. Rather, their inability to complete the UFOV can be considered as a marker of general cognitive impairment. Summary NorSDSA is used in the Nordic countries. The test manuals indicates reference levels also for individuals with dementia. The summary score was able to predict the result of an ORT with a specificity of 72% and a sensitivity of 66%. There are, as yet, no published studies with SDSA and AD patients. UFOV in used in some centres in Sweden, but evidence is missing for the discriminating ability among patients in an early phase of dementia.

2.3 Neuropsychological tests used to assess fitness to drive For a long period of time, neuropsychological tests have been used in attempts to find a relation between crash risk, driving ability and test results, with the goal to predict fitness to drive. For ethical reasons, it is not possible to make a study where cognitively impaired drivers are allowed to continue to drive in order to analyze future crash involvement. The alternative left is to relate the test results to ORT. In the literature, frequently investigated domains of importance for driving fitness (Reger et al., 2004) are attention and concentration (that also include speed components), executive functions, memory, and visuospatial skills. In addition, it would appear to be important to determine whether features such as emotional instability and increased fatigue are present. The neuropsychological test gives the clinician an important measure of impairments within dif-


ferent cognitive domains that are considered as important for traffic safety. There is, however, no documented knowledge about how the degree of severity of the cognitive impairment affects driving ability, or how decline in different domains interact. One particular example is how cognitive decline interacts with a visual acuity at the lower limit for the possession of a driver’s license. Frequently, the studies show a correlation between test variables and points obtained during a test drive. However, when the outcome from a driving test is dichotomized as pass or fail, the part of false negative test results is not acceptable. One meta-analysis has been performed by Reger et al. (2004) where 27 studies with neuropsychological test results were analyzed. Because a very large number of different test have been used, the metaanalysis was carried out with cognitive domain at one side and outcome in terms of ORT on the other side. In studies with control groups, the neuropsychological test results can predict the ORT outcome. But within a group of individuals with cognitive impairments or mild dementia to identify those who has an increased cash risk or decline in driving ability for that, those tests are not so useful. Tests of visuospatial ability are seen as the most valuable in predicting crash risk, while visuospatial ability and attention both have small to moderate effect in predicting ORT results. Executive functions showed a low relationship to ORT results, as did other neuropsychological test results. Commonly used mental status measurements such as the MMSE and the CDR do not give sufficient information to serve as the sole basis on which to make a decision concerning continued license holding (Diegelman et al., 2004), but they can be used to select patients who should be referred to evaluation (Freund et al., 2005). After the publication of the meta-analysis, Grace and co-workers (2005) presented a study showing that the Trail Making test, parts A and B and the Rey Osterreith Complex Figure are the most useful tests to predict ORT results. However, sensitivity and specificity figures were not shown. A systematic review by Molnar et al. (2006) concludes that “Without validated cutoff values it is impossible to use standard-

ized tests in clinical praxis”. The study identified “a gap in research, hindering the developing of evidence based guidelines”. Summary No neuropsychological test targets one single cognitive domain or function. Neuropsychological tests are mostly multifactorial, meaning that they tap more than one cognitive domain. Furthermore, some domains related to complex cognitive functions have several aspects. For example, attention can be subdivided into sustained attention, divided attention, and selective attention. This situation makes it even more difficult to evaluate and develop cutoff values. The conclusions from the single published metaanalysis must be interpreted with caution when the authors state that neuropsychological tests have only a small ( for attention) to moderate ( for visuospatial ability) relation to results from ORT when predicting pass/fail in a group of individuals with dementia symptoms of severity between CDR 0,5 and 1,0. On the contrary, the tests are often useful in selecting patients with impaired driving ability who need a closer evaluation.

2.4 Evaluation in a driving simulator A driving simulator gives the opportunity to perform assessments under standardised conditions. At the same time, it is possible to add hazardous traffic situations that cannot be predicted in real traffic. A simulator has, however, many drawbacks, combined with a high investment cost. Taken together, this means that simulator driving does not, at present, have the potential to become a general assessment tool, although the costs for a single drive is low. The type of simulator as well as the design of scenarios increase the likelihood that a cognitively impaired person will have difficulty to adjust the test environment and therefore obtain worse results than they would have when tested on the road, in a familiar vehicle and in familiar surroundings. In addition, problems of motion sickness, that appear to affect persons with cog-

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nitive impairment to a higher degree than non-impaired test drivers, should not be overlooked. In one study (Rizzo et al., 2001), evidence was presented that demented drivers react differently than controls in an emergency situation at a road crossing. There is no study showing evidence of a relationship between simulator results and on-road results in a group of cognitively impaired/mildly demented drivers. The performed studies in a driving simulator shows an effect on group level (Alzheimer’s disease compared to healthy controls), but not on an individual level, which is normally the clinical question. There is, as yet no study of mildly demented drivers (CDR 0,5 – 1) showing an agreement between simulator results with cutoff scores on one hand, and pass/fail at an ORT or future crash involvement on the other hand. Summary There is at present no evidence in support of the use of driving simulator in a clinical context.

2.5 On road test If “on-road tests” are used as the “golden standard” for fitness to drive, in spite of their limitations, an on-road test will give the definite answer for the individual driver. But an acceptable result from ORT does not necessarily mean that the driver is fit to drive, because of the limitations inherent to the onroad test. An ORT can be performed in different ways depending on the particular situation and local regulations. It is possible to carry out the road test under the supervision of an official driving examiner ( from the National Road Administration, or a similar official organisation). One problem in this case is that the evaluator does not have the medical knowledge to link specific medical/cognitive impairments to specific aberrations of driving behaviour. It is also possible to use an experienced driver instructor. This can, however, sometimes be problematic, because

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teaching a learner driver is not the same as correctly evaluating driving performance (in an experienced driver). In some countries (i.e., Australia, Belgium, or Canada), specifically trained occupational therapists have the role of driving assessors. Since occupational therapists have a specific expertise in the evaluation of activities, this makes them highly suitable to perform driving assessments in a clinical context. It has also been shown (Lundberg et al., 2003) that the outcome of an on-road test depends on the car used: whether it is familiar to the driver or not. Furthermore, weather and traffic conditions can influence performance, as well as unfamiliarity with the test situation. If ORTs are used as part of the medical evaluation of fitness to drive, there is a need for specifically trained/educated staff. If an ORT is performed under the supervision of an official driving examiner, a fail result will more or less automatically result in a license revocation. If the ORT is performed within a clinical context, the results can be interpreted in a more sensitive way and with taking into consideration other test results or impairments. Because the driver’s license normally will be revoked if the patient fails the ORT, it is impossible to know whether continued driving would have led to subsequent crash involvement or not. Summary An ORT of some type should be a recourse if the previous evaluation is inconclusive.

2.6 Conclusions There is no existing strong evidence for the ability of different tests and assessment methods to discriminate fit from unfit drivers in a group of persons with very mild or mild dementia. If there is a persisting uncertainty about fitness to drive after an evaluation, an ORT is recommended, but preferably after an assessment at an specialized unit with experienced staff.


Not even tests recommended by the American Medical Association or the Canadian Medical Association guidelines (e.g., the MMSE, Clock drawing test, Trails – B) can discriminate between currently safe or unsafe drivers with very mild or mild dementia. Pilot certificate The cognitively impaired holder of a pilot certificate must be discussed with the aviation authorities. High demands on cognitive functioning do not only concern pilots, but also aircraft technicians and flight controllers. Possession of firearms The scientific literature is very limited, only four papers concerning the issue were found in a literature search. No recommendations were given, except for asking about the possession of firearms and limiting access to them when patients are demented.

3 Provisional guidelines (until evidence studies are published) 3.1 Driver’s license The issue of license holding is a very sensitive and the issue of individual mobility is often related to car driving. In couples of the age groups that are concerned, often only the male party is licensed. Therefore, a revocation will have a heavy impact on mobility and social life etc. In consequence, the issue of license holding must be discussed from the very start of the memory assessment. This makes it possible to progressively reduce driving in a controlled fashion as the disease progresses, and alternative modes of transportation can be found. Depression and crises after a licence revocation are not unusual. The possession (and type) of a driver’s license should be documented in the patient’s file. In case of moderate and severe dementia, the patient should stop driving and the license withdrawn. Exceptions can be made if the patient is living in a

nursing home or is bedridden and it is impossible for him or her to get access to a car. If there are reports from family members about impaired driving ability in combination with cognitive impairments, this is a strong indication that an assessment of fitness to drive should be performed. Positive ratings from relatives are often not reliable. Reports of car crashes or “narrow escapes” are, of course, to be taken very seriously. When diagnosing cognitive impairment or mild dementia, it is important that an assessment of fitness to drive should be considered. This assessment should be performed by a person/team with special knowledge about cognitive impairments and their relation to traffic safety. Domains such as attention, judgement and memory, visuospatial and psychomotor functions are considered as particularly important. The patient’s insight concerning his or her own impairments is important and necessary in order to be able to compensate for them. If results of the assessment are to be used as a basis for a license revocation, it is important that the investigation methods and cutoff levels are validated for the situation in the country where they are used. When the clinical assessment does not yield a conclusive result, an ORT is recommended under the supervision of a competent evaluator (driving evaluator or occupational therapist). If the evaluation result indicates that the patient is fit to continue driving, patients with a dementing disease should be reassessed once a year or more frequently, depending on the rate of cognitive decline and aetiological diagnosis. For professional drivers, one must take into consideration the increased exposure to crashes, as compared to an older driver, whose driving may be limited to one or two weekly trips to the supermarket.

3.2 Railroad traffic Regulations differ between countries, but cognitive demands on train or tram drivers are generally higher than for private car drivers.

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3.3 Pilot certificate and aviation-related activities Here, regulations exist on a European and global level. Generally, no cognitive impairments are allowed for aviators or other personnel involved in air traffic safety.

3.4 Firearms The permission (license) to possess firearm(s) are, as a rule, related to a purpose, either target shooting or hunting. If a person is licensed to use the firearm for hunting, he or she is also allowed to shoot on targets, but the opposite is not true. Shooting on targets becomes an overlearned skill after long training and is normally performed under controlled circumstances. It is therefore possible for an individual with mild dementia to keep this hobby for some time, although he or she is not allowed to hold a driver’s license. Hunting requires a good perception and fast reactions. The hunter must clearly understand what he or she is aiming at, in order to avoid shooting a fellow hunter or the neighbour’s horse. Restricting hunting is therefore more important than restrict target shooting at a shooting range. Duty weapons for some professional categories (military, police, customs etc) must not be forgotten. If there is a risk of suicide (e.g., when a person receives the diagnosis of Alzheimer’s disease), firearms must be taken care of.

References Brown LB, Ott BR, Papandanator GD, Sui Y, Ready RE, Morris JC (2005) Prediction of on-road driving performance in patients with early Alzheimer’s disease. J Am Geriatr Soc 53: 94–98 Clay OJ, Wadley VG, Edwards JD, Roth DL, Roenker DL, Ball KK (2005) Cumulative meta-analysis of the relationship between useful field of view and driving performance in older adults: Current and future implications. Optometry Vision Sci 82(8): 724–31

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Cushman LA (1996) Cognitive capacity and concurrent driving performance in older drivers. IATSS Research 20(1): 38– 45 Diegelman NM, Gilbertson AD, Moore JL, Banou E, Meager MR (2004) Validity of the clock driving test I predicting reports of driving problems in the elderly. BioMed Central Geriatrics 4: 10 Dubinsky RM, Stein AC, Lyons K (2000) Practice parameter: risk of driving and Alzheimer’s disease. Neurology 54: 2205–11 Duchek JM, Hunt L, Ball K, Buckles V, Morris JC (1998) Attention and driving performance in Alzheimer’s disease. J Gerontol Psychol Sci 53B: P130–141 Folstein MF, Folstein SE, McHugh PR (1975) “Mini-MentalState” – A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 12: 189–98 Fox GK, Bowden SC, Bashford GM, Smith DS (1997) Alzheimer’s disease and driving: Prediction and assessment of driving performance. J Am Geriatr Soc 45: 949–53 Freund B, Gravenstein S, Ferris R, Burke BL, Shaheen E (2005) Drawing clocks and driving cars. J Gen Int Med 20(3): 240– 44 Grace J, Amick MM, d’Abreu A, Festa EK, Heindel WC, Ott BR (2005) Neuropsychological deficits associated with driving performance in Parkinson’s and Alzheimer’s disease. J Int Neuropsychol Soc 11(6): 766–75 Hakamies-Blomqvist L, Johansson K, Lundberg C (1996) Medical screening of older drivers as a traffic safety measure – a comparative Finnish-Swedish evaluation study. J Am Geriatr Soc 44: 650–53 Johansson K, Bogdanovic N, Kalimo H, Winblad B, Viitanen M (1997) Alzheimer’s disease and apolipoprotein E ε4-allele in older drivers who died in automobile accidents. Lancet 349: 1143–44 Johansson K, Bronge L, Persson A, Seideman M, Viitanen M (1996) Can a physician recognize an older driver with increased crash risk potential? J Am Geriatr Soc 44: 1198-04 Johansson K, Lundberg C (1997) The 1994 International Consensus Conference on Dementia and Driving: A brief report. Alzheimer Dis Assoc Disord 11 S1: 62–69 Lincoln NB, Radford KA, Lee E, Reay AC (2006) The assessment of fitness to drive in people with dementia. Int J Geriatr Psych 21: 1044–51 Lundberg C, Johansson K, and the Consensus Group (1997) Dementia and driving. An attempt at consensus. Alzheimer Dis Assoc Disord 11(1): 28–37 Lundberg C, Caneman G, Samuelsson M, Hakamies-Blomqvist L, Almkvist O (2003) The assessment of fitness to drive after a stroke: the Nordic Stroke Driver Screening Assessment. Scand J Psychol 44(1): 23–30


Molnar FJ, Patel A, Marshall SC, Man-Son-Hing M, Wilson KG (2006) Clinical utility of office-based cognitive predictors of fitness to drive in persons with dementia: A systematic review. J Am Geriatr Soc 54: 1809–24 Morris JC (1993) Clinical Dementia Rating (CDR): Current version and scoring rules. Neurology 43: 2412–14 Ott BR, Anthony D, Papandonatos GD, d’Abreu A, Burock J, Curtin A, Wu CK, Morris JC (2005) Clinician assessment of the driving competence of patients with dementia. J Am Geriatr Soc 53(5): 829–33 Reger MA, Welsh RK, Watson GS, Cholerton B, Baker LD, Craft S (2004) The relationship between neuropsychological functioning and driving ability in dementia: A meta-analysis. Neuropsychology 18(1): 85–93

Rizzo M, Reinach S, McGehee D, Dawson J (1997) Simulated car crashes and crash predictors in drivers with Alzheimer’s disease. Arch Neurol 54: 545–51 Rizzo M, McGehee DV, Dawson J, Nawrot M (2001) Simulated car crashes at intersections in drivers with Alzheimer’s disease. Alzheimer Dis Assoc Disord 15(1): 10–20 Sunderland T, Hill JL, Mellow AM, Lawlor BA, Gundersheimer J, Newhouse PA, Grafman JH (1989) Clock drawing in Alzheimer’s disease. A novel measure of dementia severity. J Am Geriatr Soc 37(8): 725–29 Wild K, Cotrell V (2003) Identifying driving impairment in Alzheimer’s disease: A comparison of self and observer reports versus driving evaluation. Alzheimer Dis Assoc Disord 17(1): 27–34

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Chapter 11

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: AUSTRIA Johannes Wancata and Josef Marksteiner

1 Introduction Human dignity is a basic right which is guaranteed by the Austrian law to each citizen including all persons with cognitive disabilities. This means that all citizens, even those with dementia and other cognitive impairments, have the right for self-determination and personal autonomy. The idea of human dignity includes the right that somebody whose ability to practise self-determination and personal autonomy should be supported by a legal representative in order to keep the chance to use his or her rights.

2 Law on guardianship for disabled people Guardianship is covered in the Civil Code (das Allgemeine Bürgerliche Gesetzbuch) and arranged by way of court settlements. It has been in force since 1984 and applies to all people whose main place of residence is in Austria. A guardian is defined as a person appointed by the courts to represent a mentally disabled or mentally ill person in the legal affairs specified in the court appointment order. The guardianship measure removes the “legal competence” of the person concerned in areas covered by the court appointment order. European legislation varies in terms of who can ask for the appointment of a guardian. The disabled person may not undertake any legal acts within the scope of the guardian’s responsibilities, without express or tacit agreement from the guardian. Exception: Legal acts in minor day to day matters may be undertaken by the person concerned on their own account. In the last 10 years in Austria, there has been a dramatic increase in guardianship,

with approximately 0.5% of the population currently under guardianship. For persons suffering from dementia the same laws are applied as for all other persons who have a (partially) impaired ability to make their own decisions (e.g., persons with other severe psychiatric disorders or mental retardation). Usually an independent evaluator is asked for an official evaluation if somebody is impaired with regards to the ability to make competent decisions. The final decision as to whether someone needs a legal representative is made by the court. Further, based on the independent evaluator’s assessment, the court must specify the tasks for which somebody needs a legal representative (e.g., financial affairs, decision about medical treatment). The legal representative may be a relative of the patient, a lawyer or a social worker.

3 Legal assistance and representation Despite this legal framework only a minority of dementia sufferers have a legal representative. One of the main reasons for this discrepancy is that both patients themselves as well as their family caregivers try to avoid a legal representative. Many patients do not want do have a legal representative because this implies (in their opinion) “to be nuts”. Since dementia is stigmatised as many other psychiatric disorders, patients try to avoid that anybody else is recognizing their mental disorder. Family caregivers often try to avoid stigmatisation of their loved family member and, therefore, consider the patients view. In addition, some families fear that the whole family could be stigmatised because of the patient’s mental illness. If a patient with dementia becomes incompetent,

Chapter 11: J. Wancata and J. Marksteiner

family caregivers often try to find their own methods to solve everyday problems. In nursing homes, the nursing staff often makes decisions instead the patients even if the patient has no legal representative. The main reason for this practice is the legal procedure is very laborious and time-consuming, but of course this practice is in conflict with the legal situation. In addition, it must be considered that the usual legal procedure to appoint a legal representative needs a comprehensive assessment and a lot of work done by the courts. If all demented patients who are not able to make competent decisions should receive a legal representative, the number of courts in Austria might be to low to manage all this work. The methods applied for the assessment of competence depend on the experts performing this assessment. The judges often ask psychiatrists or neurologists to make their assessment of competence, but sometimes other medical doctors (e.g. primary care physicians) are asked. Insurances and social services needing an assessment of competence for deciding if somebody qualifies for financial support often ask primary care physicians or specialists in internal medicine to perform this assessment. Frequently, these medical specialists are not sufficiently experienced concerning diagnosis or assessment of dementia. Often, this results in judgments or recommendations which very surprising for experts in psychiatry and neurology.

4 Advance directives Since June 2006 a new Austrian law governs advance directives concerning medical treatment. Now, persons can fix in advance which kind of treatment they do not want to receive (in the case of impaired competence). For making a legally binding directive, a comprehensive education by a medical doctor and a consultation by a lawyer are required. If the advance directive fulfils all requirements the medical staff must accept the patient’s decision. An advance directive is effective for a maximum of five years. The

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main difficulty with advance directives seems to be that with the available training programmes very few service users can be enthused to draft. Until now, it is unclear what happens if a person suffers from dementia for a period longer than five years. This new law emphasizes that everybody may change his or her decision at every moment. It is not clear if a demented person is allowed to change an advance directive, even when he or she is partially competent. (For example, aphasia and apraxia which are common among dementia sufferers might prevent that a dementia patient changes his advance directive.)

5 Testamentary capacity In Austria, testamentary capacity is not automatically withdrawn once a guardianship measure is pronounced. The decision upon a person’s testamentary capacity is a decision to be made by a court of law.

6 Consent to diagnosis and treatment Austria recognizes the requirement of informed consent, through official statements of national medical associations or in codes of medical ethics. Having a dementing illness is not an indication of impaired decision-making capacity per se. Especially in the earliest stages of dementia, patients with dementia remain capable of making a wide variety of decisions. However, the patients’ cognitive capacity has to be closely monitored at baseline, and at follow-up assessments. In the case of emergency treatment, it is the doctor’s duty to take the necessary course of action. Wishes expressed in an advance directive should be taken into account. In the case of routine medical care or treatment, the doctor must obtain informed consent. If a patient suffering from dementia is not able to provide informed consent, the legal representative has to decide on his behalf based on the will, actual or presumed, of the patient. For patients in an advanced stage of the disease or at the end of

Practice of competence assessment in dementia: Austria

life due to another disorder or illness, the wishes with regard to the relentless pursuit of treatment should be respected.

7 Giving consent for research The new European legislation on good clinical practice in the conduct of clinical trials on drugs has been implemented in 2004. The new legislation does not differentiate between patients who are incompetent because of a psychiatric illness or dementia and patients who are incapacitated owing to an emergency situation. All those patients may be enrolled in a clinical trial only after informed consent has been granted by a legal representative. Thus, in clinical trials for persons suffering from dementia the same laws are applied as for all other persons who have a (partially) impaired ability to make their own decisions. There is a big concern, that patients suffering from dementia may not be included in clinical trials, and future therapies will not be scientifically evaluated anymore. As in all other European countries, the law requires that everybody participating in clinical research gives his written consent after having comprehensively been informed about the purposes, the advantages and risks of this research. Patients suffering from dementia at an early stage may be able to understand the diagnosis and take an active role in decisions affecting their lives. For that reason, patients with dementia can also consent in take part in research, especially in clinical trials. The form which has to be signed by the patient has to be approved by Ethics Committees. The work of the Ethics Committees is based on the “Ethical Principles for Medical Research Involving Human Subjects” as given in the Declaration of Helsinki of the World Medical Association. Of course, Ethics Committees require an informed consent signed by the patient or a legal representative for research among dementia sufferers. Considering that many dementia patients who are not able to make a competent decision do not have

a legal representative brings a variety of problems for research among dementia patients. For example, an informed consent signed by the patient or a legal representative is required (by some Ethics Committees) even for research among dementia caregivers. Thus, studies investigating caregiver’s burden and performing a simple assessment of the patient by means of the MMSE are allowed only among dementia patients who are able to make a competent decision or who have a legal representative. This leads to a sampling bias. Of course, in research on human subjects, considerations related to the well-being of the patient should take precedence over the interests of science and society. But, the collection of representative data necessary for planning appropriate services for demented persons is prevented by this rigorous protection of the individual patient. The number of dementia sufferers in Austria will increase within the next five decades from about 90.000 to more than 230.000 patients. These rising numbers are similar in many other European countries. Considering this marked increase, the development of rules are urgently needed which sufficiently protect the patient and allow the investigation of essential research questions.

8 Driving licence There is no obligatory health check for the elderly subjects with memory impairment to keep their regular driving licences. As dementia progresses, cognitive impairment may seriously effect on memory, visuo-spatial abilities and perception. Due to the doctor-patient confidentiality, general practitioners as well as specialists are not obliged to disclose diagnosis showing conditions interfering with driving to the authorities unless there is sufficient reason that the patient will actually endanger other persons. Whenever patients suffering from dementia refuse to stop driving even though they have been assessed as being unsafe, there are no straightforward solutions; the best action to take will depend on the individual involved.

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Chapter 12

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: DENMARK Dorthe Vennemose Buss and Gunhild Waldemar

1 Financial capacity

3 Advance directives – medical treatment

People over 18 years are allowed to make their own financial transactions unless they are under financial receivership. Receivership is appointed by the court or made by an administrative decision to people with lack of mental capacity due to a health problem (i.e., brain diseases, brain injury, and development disorders). Before appointment of receivership the disease and the lack of capacity must be described in a medical certificate. Financial contracts made by people under financial receivership are invalid, only the receiver is allowed to make financial dispositions. The court can find financial contracts made by a person with lack of mental capacity, who is not under receivership, invalid. People with financial capacity are allowed to make a general power of attorney with decisions of whom they want to take care of their finances in the future and how they have to do it. A general power of attorney can be a notary’s document or attested by two witnesses.

People over 18, who are not under personal guardianship, can make a living will. A living will has to be registered in a special register for living wills. The person can refuse life-prolonging treatment, should he/she come in a terminal phase of a disease (unavoidably dying). This statement is binding for the doctors. The person can also refuse life-prolonging treatment, should he/she become incapable because of mental illness, old age, accidents or heart failure. This statement will only be advisory for the doctors.

4 Advance directives – daily care People can make a will with their wishes to the daily care. The community has to take the wishes serious, if it is possible, when they plan the daily care for a person, who is incapable to corporate. There are no formal requirements to a daily care will and no registration.

5 Consent to medical treatment 2 Testamentary capacity A valid will has to be attested by notaries publicus (normally a judge). Notaries publicus needs to make certain that the person has testamentary capacity. In case of incapacity the will is refused. It is the judge, who ultimately makes the assessments about capacity or incapacity; there is no medical report involved. The court can find a will, made by a person with mental incapacity, invalid.

For people with incapacity in healthcare decisions the nearest relative or a guardian can give informed consent to treatment or refuse treatment. The doctor makes the assessment about capacity. The patient must be informed and involved in the information to the extent that he can understand and that this would not cause injury. This involves taking into account the person’s views if they are current and relevant.

Chapter 12: D.V. Buss and G. Waldemar

6 Consent to bio-medical research Bio-medical research has to be approved by a scientific and ethical committee. For persons under personal guardianship the guardian can give informed consent to participation. For persons with incapacity in healthcare decisions without guardianship, the nearest relative and the general practitioner can give consent to participation. The person himself must be informed and involved in the information to the extent that he can understand and it is not allowed to force him to participate. Participation in the bio-medical research has to be in the person’s interest.

7 Driving capacity Before getting a driving licence and renewal of the licence the person has to get a medical examination and a medical certificate at his general practitioner. For drivers over 70 years of age the general practitioner has to also be aware of the person’s mental health in his examination.

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When a patient is diagnosed with dementia the doctor must be aware of the question regarding driving and should possibly recommend that the patient stop driving. If the patient does not wish to stop driving and the doctor, the family or the police find him unable to drive, then the doctor or the police can refer him to a consultative driving test.

8 Personal guardianship In combination with a financial receivership a person with mental incapacity can have a personal guardianship as well. Guardianship is appointed by the court or made by an administrative decision. Before appointment of a guardianship the disease and the lack of capacity are described in a medical certificate. The person is still legally competent and allowed to make decisions about his personal affairs as long as he can. The guardian will be there to help him and to take over when necessary. The guardian cannot make decisions against the persons will. Using force in the personal area of persons with mental incapacity is only allowed if law regulates it.

Chapter 13

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FINLAND Raimo Sulkava

1 Introduction Legal competence is not similar in different types of dementia. In Finland most patients with memory problems are properly diagnosed using techniques including brain imaging, mainly with magnetic resonance imaging (MRI). Thus we know what kind of process is going on in the brain and what are the patient’s probable clinical and neuropsychological features as well as what the prognosis of the disease is. Mini Mental State Examination (MMSE) is used in all patients, the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) neuropsychological battery sometimes and a broad neuropsychological battery only in problematic patients. A dissertation in Finnish with an English summary (Legal status of a person with dementia) was published as a book in the year 2003 (Mäki-PetäjäLeinonen, 2003). According to the study the legal system of Finland is transforming towards acknowledging greater value of fulfillment of the right to selfdetermination as previously. A person with dementia is capable of deciding his/her matters whether the matters regard his/her person or property. Only after it has been proven that this is not the case does the principle of protection becomes determining.

2 Testamentary and financial capacity In Finland a dementia disorder does not necessarily abolish your testamentary and financial rights. However, the demented patient must understand the meaning and consequences of financial and legal matters. Usually the demented patient can draw up

his/her will when the degree of dementia is mild corresponding the MMSE score 18–20 or over in Alzheimer’s disease. In these cases it is very important that there are two impartial witnesses to the will who have known the person for a long time. There is a decision of the Finnish Supreme Court where the last will of a demented person with moderate dementia was not accepted because he was doomed to be incompetent to express his independent stable will. In Finland a guardianship can be sought from the local register office for one special financial transaction, either for a certain time period or permanently. The legal guardian helps the demented person and protects him/her from financial abuse. However, although the legal guardian is appointed the demented person is not legally incompetent unless the court has in such way decided which is quite rare. In most patients with dementia seeking a legal guardian is not necessary, if the patient’s financial interests are not endangered. If the content of the will is very clear and simple and the person’s intent is longstanding and stable, the will can be drawn up even at the moderate stage of dementia. In all cases of bigger financial transactions a temporary legal guardian is recommended to prevent the possible court trials. The deal can be cancelled in court if the person is incapable of understanding its meaning and consequences. In some cases a patient with severe dementia has contracted a marriage. These are cases where the demented person has lived with his/her future spouse for a long time. In Finland certain financial and legal matters proceed more smoothly if the caregiver is married with the patient. The biggest problems are seen in moderate cases of dementia. In the trial courts the decisions can be

Chapter 13: R. Sulkava

different even in identical cases. In most cases of mild dementia the patients are truly legally competent, but some patients with mild Alzheimer’s disease are easily persuaded to handle financial affairs or wills that are not according to their true will and it is not easy to repeal these in court.

3 Advance directive Advance directives (living wills) are widely recommended for all people in Finland. The content of the living will is usually the prohibition of unnecessary prolongation of life, e.g., by artificial ventilation or treatment in intensive care unit, when there is no hope for improvement. However, only a small fraction of people have written their advance directives. In case of demented patients, the advance directives are very seldom useful because they almost never have access to intensive care. However, when an advance directive is available it is a legally competent document and its orders should be respected. Nowadays there are also so-called positive living wills. These are written documents how a person should be cared when he/she is incompetent to express his/her opinion. This is usually the case in advanced dementia. These documents can express many items, e.g., how intensively you should investigated when new symptoms appear, what kind of food and drinks you like, what is your favourite clothing, what kind of music you like to hear etc. If the personnel in institution pays attention to these things, the quality of ones lasts years can be much better even for patients suffering from dementia.

4 Consent to treatment and research The demented person’s autonomy to decide on his/ her treatment and care should be respected as long as possible. At an early stage of the disease, when the patient understands the pros and cons of the treatments, the permission is obtained only from the patient. Later and in case of any uncertainty both the

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patient and the closest relative or the legal guardian are informed and the permission is obtained from them. If the patient cannot express his/her will any more or is incompetent to understand the offered treatment option, the physician hears the relatives’ opinion. Then the physician makes the decision in the best interest of the patient. However, if the demented person’s opinion when he/she was healthy is known this should be respected. The need for residential care may compromise the demented person’s autonomy. The decision to take the demented patient to residential care is quite often done against his/her will. Sometimes the demented patient does not understand the risks of living alone. Furthermore, if living with a caregiver, the patient does not always understands the burden that he/she is causing. Usually the physician and the closest relative/legal guardian make the decision by common consent. The patient’s opinion is heard, but it is not always respected. If a demented patient is involved in research, a written, informed consent is obtained both from the patient and the closest relative or legal guardian. All research conducted on demented patients in Finland must be approved by the Ethics committee.

5 Driving capacity Alzheimer’s disease and other dementing disorders almost always lead to loss of safe driving. According to Finnish laws and regulations, however, there are some conditions when a person can keep his/her private driving license despite the diagnosis of a memory disorder. First, dementia must be mild (MMSE usually more than 20). Second, there is information from the relatives and friends that driving is safe and there are no traffic offences because of dementia. Third, clinical examination by a physician (usually neurologist or geriatrician) is passed successfully. The examination includes the clock drawing test to reveal possible agnosia. A driving test on road or in traffic laboratory is carried out in suspected cases. In cases of mild dementia, the driving license is granted only

Practice of competence assessment in dementia: Finland

for one year or even a shorter time. The professional driving license is always taken away if there is a cognitive disorder. If there are a clear impairment in executive functions, e.g. in frontotemporal dementias, or a marked slowing of movements and thinking, the driving license is take away even in mild cases. Lack of insight is also a reason to deny driving. Even if the driving license is granted to the patient he/she is asked to report any deterioration in symptoms and is advised no to drive alone, during night or in bad conditions. Since the year 2004 it is mandatory according to the law for physicians to report to police those pa-

tients who have health conditions which make driving unsafe. Most physicians do not like the law but the police have received several hundreds of reports and the driving license is taken away from the reported persons. The majority of cases have had a dementing disorder.

Reference Mäki-Petäjä-Leinonen A (2003) Dementoivan henkilön oikeudellinen asema (Legal status of a person with dementia). Dissertation, University of Helsinki

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Chapter 14

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FRANCE Marie Bouyssy, Emilie Legay, and Vincent Camus

1 Introduction

3 Informed consent

According to the French consensus statement on dementia of Alzheimer’s type at the severe stage, “whatever the stage in the course of the disease, the patient is a unique individual who deserves respect and attention, and therefore quality of care and access to care without discrimination because of age or dependence”. It adds that the main goal of care and management is to improve the quality of life of the patient and his or her family, by associating a project for life and a care plan, up to the end of life, with respect to patients rights and wills. In that perspective, assessment of competence and mental capacity to consent is part of the comprehensive medical evaluation. It takes various aspects with regard to both the decisions and situations it addresses, and the French legal and regulatory environment.

3.1 Hospitalisation and institutionalisation

2 Testamentary capacity According to the French civil law, a lack of any insanity is required to establish a testament. Civil acts are null in case of mental disease, but the notary is not expected to evaluate the mental state of his client. The burden of proof of the insanity belongs to those who act in annulling the testament. And the proof can be established by any means; even the notary has previously considered the client as “clear minded” (article 901 du code civil).

According to the French deontological code, the patient’s will has to be always followed, and as much as possible, his consent is systematically researched. The chart of hospitalisation (March 2, 2006) given to each newly admitted inpatient, states that everyone has free choice of the health care professional or of the health care setting, except for patients admitted in psychiatric settings without any consent. These psychiatric admissions are of two types: the “hospitalisation à la demande d’un tiers”, and the “hospitalisation d’office”. In the case of “hospitalisation à la demande d’un tiers”, admission is done on the basis of an informant’s request and of two medical certificates. In the “hospitalisation d’office”, the hospitalisation is done of the basis of a medical certificate and a decision of the civil authority (mayor of the city or prefect) due to potential threat of dangerous behaviour. In both cases, medical certificates must describe as precisely as possible the symptoms of the mental disorder and their impact on the people ability to make their own decisions. These admission procedures are strictly limited to admission in psychiatric wards, but are applicable neither for general hospital admission, nor for nursing home admission. The informed consent is requested for admission in nursing home. A lack of any clear objection to stay in a hospital or nursing home can often be considered as a consent or an assent (understood as an agreement to participate based on an incomplete understanding), even this concept of assent has no legal basis.

Chapter 14: M. Bouyssy, E. Legay, and V. Camus

3.2 Diagnosis and treatment Announcement of dementia diagnosis requires that a comprehensive assessment has been done, including a full neuropsychological testing and a neuro-imaging assessment. The bio-ethical law (article 16-3 de la loi de Bioéthique du 29.09.1994) emphasises the necessity to obtain an informed consent before any therapeutic or exploratory act. The law on “patients rights” (04.03.2002) states (article 1111-4) that this obtaining of a free informed consent is mandatory prior to any medical intervention, and that this consent can be withdrawn at any time. In case of lack of consent, the care provider has to respect the patient’s will, but has to use all appropriate means in order to convince the patient to accept the needed cares.

3.3 Participation in research The “Loi Huriet” on biomedical research (20.12.1988) makes mandatory to obtain of a free informed consent prior to the inclusion in a research protocol. This consent has to be written and can be withdrawn at any time. For adult persons under legal guardianship, the participation to research is possible by obtaining the free informed consent from the guardian. But the acceptation by the patient will always be researched, and the participation will made impossible in case of clear rejection by the patient. In demented patients without any guardianship, consent from first degree relatives is always researched.

3.4 How is informed consent managed in people with dementia? The deontological code (code de déontologie) states that in some circumstances, in particular in case of severe illness, the patient can be maintained in the ignorance of his state in order to protected him. In that case, informants have to be informed. Nevertheless, the law on “patients rights” (4 mars 2002) states that the care provider has to give to each patient,

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information about his medical state, the therapeutic possibilities, and their potential consequences. This law introduced the reference to a “confident referral” (personne de confiance). Patients are invited, at their admission to the hospital, to designate a person who will assist or represent them during the hospitalisation, in case of their incapacity to express their will. The patient can designate parents, caregivers or any person of his choice, whose advice will be asked in case of incapacity. This advice will have to be taken into consideration, in any decision making process.

3.5 How is it decided, whether a formal attorney (guardianship) is necessary? In France, the age of consent is 18. From that age, everyone has full legal capacity. The law protects the one who is unable to manage his own affairs by himself because of a blunting of his personal faculties. The law on “protection of incapable people” (3 janvier 1968) aims to protect people whose mental illness or incapacity limits their ability to manage their personal affairs. It offers three different levels of guardianship. In the first, civil acts can be considered to be null and void retrospectively if completed during a period of mental incapacity (sauvegarde de justice). In the second case, a designated guardian assists the citizen who keeps all his civil rights (curatelle). The third transfers to the guardian all legal issues, the citizen loosing all his civil rights (tutelle). Every physician has duty to assess any potential alteration in mental capacity due to a medical condition, and to take any appropriate decision in order to get protection to the patient. He has to take into account, as much as possible, the patient’s advice. The physician, the patient’s family, or the patient can do himself the request of protection to the court. The court, on the basis of a psychiatric expertise, judges the final decision on the modalities of the guardianship.

Practice of competence assessment in dementia: France

3.6 Does the procedure differ with regard to informed consent for –

–

–

Institutionalisation If the patient agrees, the guardian has only to be informed. In case the patient doesn’t agree, the legal consent of the guardian has to be obtained. Diagnosis and treatment The patient and the guardian have to obtain a clear statement on the medical condition and the needed medical acts. The law on “patient’s rights” (loi du 4 mars 2002) states that the consent of the patients under guardianship has to be systematically researched, a long as the patient is able to take part in decision-making and to express his willing. In case of lack of guardian’s consent, the physician can deliver appropriate cares if he knows that this lack of cares will have severe consequences for the health condition of the protected adult. Participation in research The consent has to be obtained by both the patient if he is able to give a consent, and the guardian.

–

property and financial affairs, but people retain their own civil rights. The court can designate any family member has guardian. La tutelle: According to this type of guardianship, the guardian represents the protected people in all civil acts. The patient is fully deprived of all civil rights. The guardian can be any member of the family. This is the most frequent type of guardianship used to protect demented people.

3.8 Can a spouse or child decide for the patient without a formal assignation as guardian concerning the following areas? The French Civil Code defines (article 219) that when one patient in unable to express his consent, the spouse can ask to the court the authorisation of representing the patient. In that case, the spouse represents the patient for consent of hospitalisation, treatment, and participation to research protocol. Spouse or children can also be designated as “confident referral” in the sense of the law of “patients rights” (loi du 4 mars 2002) during an hospitilization.

4 Driving licence 3.7 Is it possible to arrange formal guardianship only for certain areas of competence (e.g., finances, treatment…)? The law of January 1968 on “protection of incapable people” distinguishes 3 types of guardianship: –

–

La sauvegarde de justice: this temporary device applies to protect people whose mental capacities have been altered for a short period or for waiting a final decision regarding the two other types of guardianship regime. Acts done during the period of mental incapacity can be considered as null, but people get full exercise of their civil rights. La curatelle: In this case, an agreement of the guardian is requested for some acts regarding

A new governmental project on driving security is actually under discussion in France. It aims to improve the early detection of medical contraindications to driving capacity. Driving capacity should assess visual acuity, alertness, and gait performances. Driving capacity assessment should take place along the life span, prior to the initial delivery of the driving license, and during each systematic and standard preventive medical evaluation (as made in working medical evaluation…). From the age of 75, a systematic evaluation should be done every two years, in order to detect at risk patients, inform them, and try to obtain their consent to revoke their driving license. At this time, practical modalities of this systematic evaluation are not clearly defined.

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Chapter 14: M. Bouyssy, E. Legay, and V. Camus

5 Conclusions The French legal framework offers several devices that help to ensure respect of rights and wills of patients suffering from dementia. Care providers rou-

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tinely use them but specific tools that could help to conduct reliable clinical assessment of competence and mental capacity are still lacking. Developing such tools is a current way of research in the field of psychosocial dimensions of dementia care.

Chapter 15

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GERMANY Volker Lipp

1 General outline 1.1 Introduction Persons suffering from dementia, like other persons with intellectual disabilities, due to their human dignity as guaranteed within the German Constitution, are recognised as a person with the capability to hold rights and obligations (“Rechtsfähigkeit”) from birth until death. The concept of human dignity also includes the right to self-determination or personal autonomy. Consequently, any restriction of one’s legal capacity (the competence to exercise rights and to assume duties, “Handlungsfähigkeit”) has to be compensated by legal representation because this person would otherwise be deprived of the chance to use his rights. This is accepted only for purely personal decisions (e.g., to enter into a marriage) which cannot be made by a representative on behalf of the person. For a detailed discussion see Lipp (2000).

1.2 “Natural” incapacity In Germany, the age of majority is 18. At this age, everybody gains full legal capacity. However, an adult, due to his mental illness or disability, may not be able to understand the meaning and consequences of a transaction or to decide for himself. Decisions made by this person are then regarded as legally invalid ( for financial transactions see §§ 104, 105 BGB, i.e., the German Civil Code). This so called “natural” legal incapacity (as opposed to a declaration of incapacity by a court which no longer exists under German law) works as single-case orientated exception to

the general rule that an adult has full legal capacity. The party invoking this exception in court has the burden of proof. The court then hears a medical expert, usually a psychiatrist. The court deals with the question of incapacity only as a possible cause for the invalidity of the specific decision or transaction at issue. It does not decide on the incapacity of the person as such. Anybody dealing with an adult, citizens as well as physicians or public officials, can rely on this. On the other hand, German law does not protect the good faith in the capacity of the person one is dealing with. In certain cases, where a public official is involved, it obliges the official to check the capacity of the parties (e.g., the notary when authenticating a legal transaction or act, “notarielle Beurkundung”). This does not mean, however, that the official has to assess the competence positively. It rather means that the official has to look out for indications of incapacity. Whereas these principles apply to all forms of the so called “natural” legal incapacity, there are different sets of rules for different forms of capacities, namely for the transactional capacity on one side (“Geschäftsfähigkeit”), and for capacity to become liable for a delict on the other (“Deliktsfähigkeit”). Moreover, additional rules can be found, or are discussed, for special transactional capacities like testamentary capacity, capacity to marry or capacity to consent to medical treatment. For the most recent in-depth analysis see Lipp (2000).

Chapter 15: V. Lipp

1.3 Legal assistance and representation 1.3.1 Legal Guardianship (“Betreuung”) Whereas the rules on “natural” legal incapacity can be understood as minimum legal protection of mentally ill or handicapped adults, they do not provide means for taking care of their affairs. Until 1991, the German system followed the traditional approach of legal incapacitation by court decree and the appointment of a legal guardian. The Guardianship Law of 1992 (“Betreuungsgesetz”) changed that completely. “Betreuung” is a new form of guardianship without the precondition of an incapacitation of the adult, tailored to the needs of the person for legal support and representation. The court has to determine in every single case the affairs for which the legal guardian (“Betreuer”) should be competent. The assessment of the area of incompetence by the court must be based on a diagnosis of mental illness or disability by a medical expert, but also on an evaluation if, and where, support and representation by a legal guardian is necessary (§ 1896 BGB). The diagnosis of dementia alone, even if it severely impairs the capability to decide, will therefore not lead to the appointment of a legal guardian if the affairs of the adult can be taken care of by other means, e.g., by social services or family members. For a detailed discussion, see Schwab (2004). Legal capacity of the supported person can only be restricted by an additional court order so that he will need the guardian’s consent for financial transactions described in the order, if there is substantial danger for him arising from those transactions (§ 1903 BGB: “Einwilligungsvorbehalt”). Legal capacity in other fields, like consent to treatment, cannot be restricted. An overview is given by Lipp (2003).

1.3.2 Enduring Power of Attorney (“Vorsorgevollmacht”) The power of attorney covering, inter alia, the case of incapability is an acknowledged alternative to legal

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guardianship and strongly promoted in order to avoid (costly) court proceedings. It can be issued as long as the principal is not legally incapable to do so, and maybe phrased generally, except in personal matters like medical treatment or institutionalisation where it must explicitly state the powers of the agent. The document may be entered in a public register which can only be inspected by the guardianship courts. In principle, there is no court supervision of the conduct of the agent except medical treatment with serious risks for health or life of the patient or institutionalisation where the agent must obtain permission of the court like a guardian (§§ 1904, 1906 BGB). However, if there are indications for a misuse of the power of attorney, the court will appoint a guardian to control the agent (§ 1896 sec. 3 BGB). At the moment, the law is quite uncertain to whom an enduring power of attorney can be given apart from family members and attorneys (see Ahrens, 2005). As the law on legal consulting (“Rechtsberatungsgesetz”) is about to be reformed, this may change soon. In any case, the main question for the principal remains to find somebody whom he can trust to act according to his will even if there is little control, or none.

2 Selected areas Whereas the capacity to act in financial transactions is governed by the rules on general transactional capacity (“Geschäftsfähigkeit”) as described in the first section, there are some areas where additional or even different rules apply.

2.1 Testamentary capacity The substantive rules on testamentary capacity of an adult (§ 2229 sec. 4 BGB) do not differ from the general rules. Since a will can be made by any adult in writing, there is no obligatory assessment of mental competence. If the will, however, is made with the help of a notary (§§ 10, 11, 28 Beurkundungsgesetz),


Practice of competence assessment in dementia: Germany

or other persons (emergency will, see §§ 2249 – 2251 BGB), these persons are obliged to assess the testamentary capacity. As has been said above, this means that they have to check for indications of incapacity. They do not decide whether the testator is incapable but have to record their findings (§ 28 Beurkungsgesetz).

2.2 Consent to diagnosis and treatment Apart from emergency cases, every medical intervention requires the consent of the patient. If the patient is incapable to give consent because, due to his mental illness or disability he cannot understand the importance and consequences of the treatment, or is not able to decide for himself (“Einwilligungsunfähigkeit”), his legal representative has to decide on his behalf. A legal guardian as well as an agent with an enduring power of attorney must decide according to the will, actual or presumed, of the patient. If they intent to give consent to a medical treatment with serious risks for health or life of the patient, they have to obtain the permission of the court (§ 1904 BGB). Permission of the court is also required for a veto against life sustaining treatment which the doctor recommends (see Bundesgerichtshof [German Supreme Court in Civil Matters], 2003 and 2005), and for compulsory treatment of an institutionalised patient (§ 1906 BGB, see also Bundesgerichtshof, 2006).

2.3 Participation in research In principle, the rules on medical treatment also apply to medical research. It is, however, debatable whether the guardian is able to give consent to medical research without direct benefit, or at least the chance of it, for the patient who is incapable to give consent himself. Apart from that, there is a wide range of legislation, often induced by the European Union, which set up additional requirements (e.g., § 41 Arzneimittelgesetz). For an overview see Deutsch and Spickhoff (2003).

2.4 Advance directives Advance Directives for medical treatment have been at the heart of the ongoing debate on end-of-life decisions in Germany. They were recently acknowledged by the courts as legally binding directives provided they are applicable to the specific situation and the patient was not legally incapable when issuing them. Even if not required by law, they usually are in writing. An advance directive remains valid until it is revoked or there is sufficient reason to believe that the patient would have revoked it. The details have been discussed elsewhere (Lipp, 2005).

2.5 Driving licence There is no obligatory health check for the elderly to keep their regular driving licences. A health check and an eye check every fifth year beginning with the age of 50 are required for persons with special driving licences for lorries, buses and taxis (§ 48 sec. 5 Fahrerlaubnisverordnung). A physician, due to the doctorpatient confidentiality, may not disclose his diagnosis showing conditions interfering with driving to the authorities unless there is sufficient reason that the patient will actually endanger other persons.

References Ahrens M (2005) Autonomie in Fesseln – Vorsorgevollmacht und Vorsorgeverhältnis an den Schranken des Rechtsberatungsgesetzes. Betreuungsrechtliche Praxis 14: 163–67 Bundesgerichtshof (2003) Beschluss vom 17. 3. 2003 – XII ZB 2/03. Entscheidungen des Bundesgerichtshofs in Zivilsachen 154: 205–30 Bundesgerichtshof (2005) Beschluss vom 8. 6. 2005 – XII ZB 177/03. Entscheidungen des Bundesgerichtshofs in Zivilsachen 163: 195–01 Bundesgerichtshof (2006) Beschluss vom 1. 2. 2006 – XII ZB 236/05. Betreuungsrechtliche Praxis 15: 145–49 Deutsch E, Spickhoff A (2003) Medizinrecht, 5th edn. Springer, Wien New York Lipp V (2000) Freiheit und Fürsorge. Der Mensch als Rechtsperson. Mohr Siebeck, Tübingen

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Lipp, V (2005) Patientenverfügung und Lebensschutz. Zur Diskussion um eine gesetzliche Regelung der „Sterbehilfe“. Universitätsverlag, Göttingen Lipp, V (2003) Die neue Geschäftsfähigkeit Erwachsener. Zeitschrift für das gesamte Familienrecht 2003: 721–29

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Schwab D (2000) Kommentierung der §§ 1896–1921 BGB. In: (Rebmann K, Säcker FJ, and Rixecker R, eds) Münchener Kommentar zum Bürgerlichen Gesetzbuch Band 8: Familienrecht II, 4th ed. CH Beck, München, pp 1793–2172

Chapter 16

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GREECE Magda Tsolaki and Eleni Tsantali

1 The legislative frame for dementia Currently, dementia in Greece is unfortunately not even recognised as a type of disability. There is no legislative frame, not even any mention of the term “dementia”. The legal system refers only to patients with psychiatric disorders and other categories of people who are not demented. In addition, psychiatric and demented patients are confronted by the legislation of legal guardianship. This law aims to keep the disability patients active and functional because of the respect of their personality. Close relatives need a lawyer in order to deposit the application form of legal guardianship in Court and the closest relative will be proposed as temporary and definitive legal guardian, although other relatives (not more than 3) will be proposed as members of the supervisory council. The legislation anticipates similar self-appointed confrontation for the patients who are alone or abandoned or who have no relatives or other caregivers. However, there are always judicial debates among the closest relatives for the financial resources management and especially in cases involving many children. The Greek government does not give financial assistance specifically for dementia people even that provided to people with specific needs and the real situation is that: (1) The dementia is not recognised as a mental disability, need specific care and inter-scientific management, (2) The dementia people are not placed among the specific need patients, (3) There is no solidarity assistance for the caregivers, or even permissions from their jobs in order to care for dementia people,

(4) There is not the minimum financial assistance because of dementia but there is a retirement because of aging. As a consequence of the previous mentioned there is a legislation gap furthermore in issues related to demented patients as testamentary issues, research issues in dementia, the right of patients to refuse drug treatment and so on. Now the Greek Association of Alzheimer’s Disease and Related Disorders (GAADRD) considering the European legislation about dementia suggests a law frame in order to protect dementia patients, to secure their rights and to ensure a better quality of life for them and their caregivers. The GAADRD managed recently the dementia people to get free their drugs.

2 Competence in dementia But how one can decide that an elderly has dementia and about his/her competence? In Greece the assessment of Alzheimer’s disease is made by memory clinics in most of the cases being incorporated by the departments of Neurological Clinics. The dementia patients are accommodated in the same rooms with patients of other neurological disorders and the nurses are not trained for dementia. A patient complaining of memory disorders needs at least a couple of months in order to visit a memory clinic after a an appointment arranged. During the first visit, the clinician follows the international standard steps for the diagnosis of dementia; such as clinical, neuropsychological, laboratory and neuroimaging assessments. At least in the urban areas this is done by interdisciplinary teams.

Chapter 16: M. Tsolaki and E. Tsantali

However, not all memory clinics use the same cognitive battery for dementia although there exists a large consensus regarding laboratory and neuroimaging assessments. After the first assessment and the diagnosis followed by drug care, the patient visits the memory clinic after 6 months for a follow up and perhaps for a more detailed assessment. Competence in Greece means an ability for the patients to live on their own with a caregiver for supervising his/her dailies activities, arranging his/her basic financial obligations, taking care of the personal needs of feeding, dressing, communicating, and walking. The assessment of competence in dementia although ought to be based on an objective frame, at the same time depends on an individual frame as the age, the educational level, the socioeconomic level of the patients (job, hobbies, family background, world view) and the general cultural level. Though there are some common accepted standards according to the welfare in the elderly these are limited to the autonomy in activities, the level of functionality, the ability to communicate and the self-awareness of the subject about their own physical and mental health.

2.1 The assessment of competence (mental, functional, driving, financial) Perhaps neuropsychological assessment of dementia is the best measurement for mental competence as it can provide reliable and objective measures of cognitive function and can be used as a supplementary tool for the diagnosis of dementia and the non-pharmacological treatment. Although this is also influenced by the level of education, age and the social background. 2.1.1 Mental competence Mental competence is presupposed for complex cognitive activities including financial management, driving and self autonomy. Errors in the executive domain (loss of task, nonresponsive answers, and loss of detachment) are key predictors of declining competency performance by AD patients. Neuropsycho-

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logical analyses in the AD group generally confirmed the conceptual domain assignments of the qualitative scores (Marson et al., 1999). In order to assess the mental competence the clinicians frequently use the scales of the Mini-Mental State Examination (MMSE) (Folstein et al., 1975; Fountoulakis et al., 1999) and for a more detail information the Alzheimer’s Disease Assessment Scale – Cognitive Subscale (ADAS-Cog) (Rosen et al., 1984) or select subtests of cognitive batteries in order to have a more detail assessment. 2.1.2 Functional competence A couple of scales frequently used in Greece for the assessment of the autonomy and functionality in every day life are the Instrumental Activities of Daily Living (IADL) (Lawton and Brody, 1969), the Functional Rating Scale for Symptoms of Dementia (FRSSD) (Hutton, 1990), the Alzheimer’s Disease Activities of Daily Living International Scale (ADL-IS) (Reisberg et al., 2001), the Blessed Dementia Rating Scale (BDRS) (Blessed et al., 1968), and less the Disability Assessment for Dementia Scale (DAD) (Gélinas et al., 1999). The health professionals of the European Program “Help in home” can assess the functionality of elderly people at their home and offer primary care (medications, cooking, shopping, nursing, cleaning). But this help is not merely a daily one as even a moderately demented patient needs 24 hour attention from a caregiver. Family members and neighbours, and in particular in rural areas, care for elderly dementia patients, by enhancing the quality of the time the patients live away from a nursing home. In Greece there are more problems for assessing the mental competence by the clinicians. The tools commonly used worldwide have to first be translated and standardised for the Greek population in order to have a common criterion of assessment with the other European countries. 2.1.3 Driving competence Another aspect of autonomy and using instruments is driving which was found to be mildly impaired in prob-

Practice of competence assessment in dementia: Greece

able AD drivers at a severity of Clinical Dementia Rating (CDR) 0.5. But the autonomy of the patients cannot restrict the freedom and safety of other people since AD drivers at a severity of CDR 1 cause significant traffic safety problem both from crashes and from driving performance (Drachman, 2004). There are no finished or pressed studies in Greece about the correlation between the first perception and judgment disorders and dementia which lead to accidents and injuries, particularly as the disease progresses. Although the degree of the patient’s competence in everyday activities can be contacted by the caregivers and clinicians to regularly assess competence, we know from other researches that mild AD patients did not do as well on-road driving tests, when given verbal directions for following a specific route. Like many other skills, driving ability declines slowly in the early stages of Alzheimer’s, moreover, deciding when it’s time to give up the car keys can be difficult for any elderly person and his family (Drachman, 2004). There is an informal consensus of the clinician and the family members in order the AD patient to stop driving. A 65 old driver is obliged to do a review of his/her licence contained ophthalmologic and pathological tests but not cognitive ones. The private driving schools are mediated in order to review the driving licence of elderly people. The reliability of the previous mentioned examinations is valid, only if someone accepts that there is an ethical background of the private driving schools. But what happens if someone does not accept this?

2.1.4 Financial competence Except for driving ability, financial capacity (Marson et al., 1999) represents an issue of great significance for AD patients and their families, and is a part of the global management of a progressive illness in which loss of capacity for instrumental tasks, such as driving and handling finances, can be planned for in advance. Financial capacity means almost intact basic monetary skills, financial conceptual knowledge, cash transactions, checkbook management, bank statement management, and financial judgment.

This can be measured by using tools such as the Financial Capacity Instrument tasks. Financial capacity is already impaired in mild AD. In the first stages, financial incompetence means deficits in more complex financial abilities and impairment in most financial activities, although in moderate cases, severe impairment of all financial abilities and activities is present. Unfortunately, hospitals don’t frequently use a Financial Capacity Instrument task, and scrupulous people can take advantage of demented patients as they accompany them to the bank, alleging to take money on the patients’ behalf. Another aspect of competence in financial management is the creation of a testament. If the elderly people prepares a testament before becoming demented, the testament is accepted. In other cases, the testament can be disputed by the heritors, frequently referring to dementia as a psychiatric disorder. In this case, the testament has restricted validity if the heritors brings an expert on dementia with them to court. Then the judicial dispute favours the rights of the heritors.

2.1.5 Personality competence and nursing homes Other aspects of competence in dementia are the domains of language, executive dysfunction, affective dysfunction, and compensatory responses. Incompetence in language means for a patient more miscomprehension, factual confusion, intrusions, incoherent responses, non responsive answers, loss of the ability to perform and delgate tasks than the normal elderly (Marson et al., 1999) The progressive loss of communication skills accompanied by functional disability, behavioural disorders and the lack of free time for family members lead to the placement of dementia patients into institutes, most notably in larger cities. According to a recent study (Melki and Belos, 2003) about the institualization of elderly people in Greece (1) 25% of institutionalized elderly people have no children and no close relative (2d degree or no relative people).

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(2) 62% of institutionalized elderly people are entered into nursing homes by their children. 35% (1:3) are decided by their spouse (www.encephalos.gr).

2.1.6 Advance directives and end of life decisions When the disease progresses the caregivers receive advice from the Greek Association of Alzheimer’s Disease and Related Disorders, other non-profit associations about quality of life in elderly or private clinicians about the future of their patient and then they decide what to do. But there is no legislation framework about painless death or euthanasia, even in non reversible diseases. When a patient refuses treatment, there is cooperation between clinicians, especially psychiatrists and psychologists, and the family in order to act in the patients best interests since he/she can’t decide for himself/herself.

3 Conclusions The Greek Association of Alzheimer’s Disease and Related Disorders is now preparing a legislation framework in order to suggest it to the Greek government for helping dementia patients and their families, protecting their human rights and ensuring their welfare during the progression of the disease. In the 12 years of its’ existence, it has created more than 25 branches throughout Greece, promoted information about dementia and especially Alzheimer’s disease, and has advanced the assessment and the rehabilitation in dementia by creating Day Care Centres in many Greek cities. It is a non profit association and its’ funds come from volunteers, companies and the Greek church. At the shown form it is organising annual seminars for the health professionals and caregivers in order to help dementia people and their families minimising their burden during the disease. The counseling and help line services are also cooperating for this purpose.

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References Blessed G, Tomlinson BE, Roth M (1968) Association between quantitative measures of dementing and senile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 114: 797–811 Drachman DA (2004) Safe driving: aging and Alzheimer’s disease (commentary). Neurology 63: 765 Feldman H, Sauter A, Donald A, Gèlinas I, Gauthier S, Torfs K, Parys W, Mehnert A (2001) The disability assessment for dementia scale: A 12-month study of functional ability in mild to moderate severity Alzheimer’s disease. Alzheimer Dis Assoc Disord 15: 89–95 Folstein MF, Folstein S, McHugh RR (1975) “Mini-Mental State”: a practical method for grading the cognitive state of patients for the clinician. J Psychiatric Res 12: 189–98 Fountoulakis KN, Tsolaki M, Iacovides A, Yesavage J, O’ Hara R, Kazis A, Ierodiaconou CH (1999) The validation of the short form of Geriatric Depression Scale in Greece. Aging Clin Exp Res 11: 367–72 Gélinas I, Gauthier L, McIntyre M, Gauthier S (1999) Development of a functional measure for persons with Alzheimer’s disease: the disability assessment for dementia. Am J Occup Ther 53: 471–81 Hutton TJ (1990) Alzheimer’s disease. In: (RE Rakel, ed) Conn’s Current Therapy. WB Saunders, Philadelphia, p 780 Lawton MP, Brody EM (1969) Assessment of older people: self maintaining and instrumental activities of daily living. The Gerontologist 9: 179–86 Marson DC, Annis SM, McInturff B, Bartolucci A, Harrell LE (1999) Error behaviours associated with loss of competency in Alzheimer’s disease. Neurology 53: 1983 McIntyre MC (1994) Criterion-related and construct validation of the disability assessment for dementia scale. Thesis submitted for an M.Sc. in Rehabilitation Science, School of Physical and Occupational Therapy, McGill University, Montreal, Canada Reisberg B, Ferris SH, de Leon MJ, Crook T (1988) The Global Deterioration Scale (GDS). Psychopharmacol Bull 24: 661–63 Reisberg B, Finkel S, Overall J et al. (2001) The Alzheimer’s disease activities of daily living international scale (ADL-IS). Int Psychogeriatrics 13: 163–81 Rosen WG, Mohs RC, Davis KL (1984) A new rating scale for Alzheimer’s disease. Am J Psychiatry 141: 1356–64

Chapter 17

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: IRELAND Mairead Bartley and Desmond O’Neill

1 Introduction There has been a significant growth in the number of older persons living in Ireland. In 2002, there were 436,001 people aged 65 and over living in Ireland, just over 11% of the total population (Central Statistics Office, 2002). It is expected that there will be approximately 840,000 people aged 65 and over in 2031, more than twice as many as in 1996. In 1993, the Irish government adopted The Years Ahead (Working Party on Services for the Elderly, 1988) as an official policy on health and social care for older people, and has made significant commitments to the development of specialist healthcare for older people (O’Neill and O’Keefe, 2003). Although the majority of older people lead independent lives, there is a significant minority that has impaired capacity, chiefly because of dementing illness, and at some stage will require assessment of their capacity. The Irish government, spurred on by (a) new mental health legislation in 2001 (Mental Health Act, 2001), (b) a report of its own advisory body on older people (National Council on Ageing and Older People,1998) and (c) recommendations of the government working group on elder abuse (Working Group on Elder Abuse, 2002) has initiated a process of reform of the law on older people which for the first time addresses the need to consider capacity in terms of the acquired cognitive deficits of the dementias. As this reform of the laws relating to capacity is a work in progress, this paper outlines (i) the existing practice for assessing capacity, (ii) current training norms, and (iii) the proposed changes of the Irish Law Reform Commission (which has consulted wide-

ly with geriatricians, old age psychiatrists and other health and social care professionals).

2 Current practice In Ireland there is no specific legislation to define precisely what mental capacity exactly involves and how it can be assessed. There is some legislation dealing with mental disorder, the Mental Health Act of 2001, and it is chiefly of importance as it recommends assessment of capacity on the basis of function rather than status, and therefore establishes an important principle for the Irish health and legal systems. Other areas of law focus on specific situations such as capacity to make a will or consent to a medical procedure. Capacity to make a will or to marry is often assessed retrospectively while capacity to consent to medical procedures or engage in litigation may have to be assessed either in the presence or in retrospect. The somewhat outdated Ward of Court system and the newer Enduring Power of Attorney (EPA) scheme require that legal competence be assessed in general, in the present and for the future (Law Reform Commission (LRC), 2003). The purpose of wardship is to essentially protect the interests of the ward (Mills, 2002). In order to be taken into wardship, a person must be declared to be “of unsound mind and incapable of managing his person or property” (LRC, 2003). The President of the High Court or Circuit Court is established as the person’s legal guardian, so that any decision making in relation to that person must be made in conjunction with the court, having the individual’s welfare as its main concern.


Chapter 17: M. Bartley and D. O’Neill

The court will appoint a wardship committee (i.e., a committed person or persons, rather than a committee in the conversational sense of the word) to manage the day-to-day welfare of the individual involved and even give consent to medical treatment on their behalf. In cases where the treatment is regarded as serious the committee may ask the consent of the court, however, what is regarded as “serious” remains undefined (Madden, 2002). Wardship is currently the only real option where a person is lacking in capacity, but given the complete loss of civil rights involved is relatively infrequently invoked. In cases involving someone who is expected to lose capacity over a period of time, as in dementia, the patients can confer “Enduring Power of Attorney” (EPA) on someone who can then make decisions on their behalf. Under the Power of Attorney Act 1996 the appointed attorney may have power over the property, financial and business affairs and personal care (but not health care) decisions of the donor if the person becomes or is becoming mentally incapacitated (Power of Attorney Act, 1996). For people who have the foresight to put an enduring power of attorney in place, the most significant advantage is that they have chosen their own substitute decision maker should they ever need one (LRC, 2003). A downside is the lack of a systemic oversight by the state of the administration of EPA’s. A number of different words and phrases are used to describe people who do not have legal capacity. People are variously described in Irish or other legislation as being incompetent, mentally incapable, mentally disordered, dependent, and of unsound mind (LRC, 2003). Recent Irish Mental Health legislation recognises various categories of “mental disorder” including intellectual disability, but this is concerned with people who may benefit from psychiatric care and not with legal capacity. Nevertheless, mental disorder as defined under the mental health legislation may be an indicator of lack of legal capacity. The Enduring Power of Attorney legislation uses the term “mental incapacity”. The Criminal Law Insanity Bill 2002 deals with unfitness to plead, which may be regarded as a form of lack of legal capacity.

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Adults are presumed to have legal capacity unless the contrary is proved. The onus of proving that an adult does not have legal capacity rests on the person asserting this. Likewise, proving that an otherwise incapacitated person has had a “lucid interval” rests with the person asserting this, since there was a previously assumed continuance of incapacity (LRC, 2003). The capacity required by law relates to the decision in question, that is that it is issue specific. This means that there are different tests for capacity in relation to such decisions. These are mainly derived from common law. A decision on legal capacity in relation to one issue does not necessarily mean that the same decision will be given in relation to a different issue. There is a remarkable shortage of published information about the criteria for assessing whether someone is mentally capable of managing and administering his or her property and affairs. In particular, the assessment of capacity is not defined in either the Irish biomedical literature or the guidelines of the regulatory body for Irish doctors, the Medical Council. The Medical Council’s guidelines (Medical Council, 2004) on ethics provide some general but undefined directions on capacity. In the first instance they remind doctors that “disability does not mean lack of capacity” and secondly that most patients with psychiatric illness have capacity to consent. It also advises doctors that, in the event of refusal of treatment, an “assessment of capacity should be carried out by a medical professional, in conjunction with a senior colleague”. The assumption underlying this lack of clear guidance on the methods of capacity is that the doctor’s assessment aspires to the highest standard of practice and behaviour, i.e., in line with international best practice. The British Medical Association has published a “Consent Tool Kit” to assist healthcare professionals in dealing with consent issues and incapacity (British Medical Association, 2003). This states that to demonstrate capacity individuals should be able to: (1) understand in simple language what the medical treatment is, its purpose and nature and why it is being proposed (2) understand its principal benefits,

Practice of competence assessment in dementia: Ireland

risks and alternatives; (3) understand in broad terms what will be the consequences of not receiving the proposed treatment; and (4) retain the information for long enough to use it and weigh it in the balance in order to arrive at a decision. Overall, wide discretion appears to be allowed, with little by way of the specification of the training of the physician who undertakes the assessment, or indeed of the framework within which it might occur (i.e., enabling) or the type of supports or tests involved. However, the leading legal commentator on law and medicine in Ireland has strongly endorsed an enabling approach to capacity assessment (Madden, 2002).

3 Current training As the Irish higher training in geriatric medicine and old age psychiatry closely parallels that in the UK, the training of trainees in each field is heavily influenced by practices in the UK. The BMA/Law Society book is widely used, and in general an approach is emphasized which seeks to treat any remediable impediments which might impair understanding, alleviate sensory deficits, and facilitate communication through assistance of a speech and language therapist or psychologist. A particularly helpful clinical scheme for the assessment of capacity has been advanced by Molloy (Molloy et al., 1999), and this approach is also used in training SpRs.

4 The (near?) future To this end we rely on recommendations from the Law Reform Commission (Law Reform Commission, 2005), who have adopted a functional rather than status approach to capacity assessment. Provisionally, the Law Reform Commission recommends the following: –

there should be a statutory presumption of capacity;

–

–

–

the decision on general legal capacity should be made by a tribunal composed of a Judge as chairman with appropriate medical and lay personnel, and with an appeal to the Circuit Court, and further appeal to the High Court, they should conduct an inquiry into the person’s capacity on a non adversarial basis; there should be guidelines available to people who are assessing capacity to ensure that the assessment is a genuine objective assessment of capacity and is not affected by issues such as literacy, conventional views of values or other irrelevant matters; there should be a detailed definition of general legal incapacity, which includes mental disorder broadly as defined in the Mental Health Act 2001 and mental disability.

These guidelines have been formulated with active participation from geriatricians and old age psychiatrists, and hopefully will form the basis for a humane and scientific approach to capacity assessment in the near future

References British Medical Association (2003) Consent Tool Kit, 2nd edn. London Central Statistics Office (2002) Cork, Central Statistics Office, www.cso.ie Law Reform Commission (2003) Consultation paper on Law and the Elderly (LRC CP-2003). Law Reform Commission, Dublin; http://www.lawreform.ie/files/Consultation%20 Paper%20on%20Law%20and%20the%20Elderly%203-0603.pdf. Law Reform Commission (2005) Consultation paper on vulnerable adults and the law. (LRC CP 37-2005). Dublin, Law Reform Commission; http://www.lawreform.ie/files/Consul tation%20Paper%20on%20Capacity%20_final%20version_ .pdf Madden D (2002) Medicine, ethics and the law in Ireland. Butterworths, Dublin Medical Council (2004) A guide to ethical conduct and behaviour, 6th edn. Medical Council, Dublin Mills S (2002) Clinical practice and the law. Butterworths, Dublin

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Molloy DW, Darzins P, Strang D (1999) Capacity to decide. New Grange Press, Hamilton, Ontario National Council on Ageing and Older People (1998) The law and older people: A handbook for service providers. National Council on Ageing and Older People, Dublin O’Neill D, O’Keefe S (2003) Health care for older people in Ireland. J Am Geriatr Soc 51(9): 1280–86 Oireachtas na hEireann (1996) Power of Attorney Act 1996, s 6. The Stationery Office, Dublin

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Oireachtas na hEireann (2001) Mental Health Act, 2001. The Stationery Office, Dublin Report of the Working Party on Services for the Elderly (1998) The years ahead – a policy for the elderly. The Stationery Office, Dublin Working Group on Elder Abuse (2002) Protecting our future. Stationery Office, Dublin; http://www.dohc.ie/publications/ pdf/pof.pdf

Chapter 18

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ITALY Rosa Liperoti and Roberto Bernabei

1 Introduction The diagnosis of dementia is associated with multiple and difficult ethical issues which involve patients, relatives, caregivers and health care providers. Individual values, religion and culture may largely impact patients’ and physicians’ behavior in managing such ethical and legal aspects. In Italy, a central role is played by the general practitioner who may guide patients’ and families’ choices together with specialists involved in the care delivery process. Nonetheless, adequate knowledge on the norms regulating legal and ethical issues in dementia is not systematically diffused among both general practitioners and specialists and the integration of these aspects in the whole process of care is strongly solicited. Main ethical and legal issues in dementia, which have been formally regulated in Italy, include the assessment of driving competence and the assessment of understanding and decision-making ability.

2 Assessment of driving competence Driving a car is a complex activity, which requires rapid reactions, ability to make judgements, memory of rules, absence of practical experience, hearing and vision impairment. Even in the early stages, dementia may be associated with impairment of attention, of orientation, of visuo-spatial ability, which may make driving dangerous for patients and other people (Adler et al., 2005). On the other hand driving is an important psychological resource for most patients with dementia. Prohibiting driving may represent a

source of frustration for patients and conflicts with families (Snyder, 2005). In order to reduce the risk of injury for patients and other people, it may be necessary to require the revocation of the driving license. The revocation procedure is regulated in Italy by the article 130 of the “Nuovo Codice della Strada” (Revoca della patente di guida). According to this norm, the Motorizzazione Civile (which is the government office in charge of regulating driving licenses) may revoke the license after a medical assessment documenting that the person has no longer the physical and mental requisites for driving. The license revocation is not possible before the medical assessment. A relative, a legal tutor, a legal caretaker, a local court judge may formally express request of revocation to Motorizzazione Civile. Physicians taking care of the patients may only instruct relatives about the revocation procedure or in alternative they may directly report to the local authority the need for license revocation. Following a formal request of revocation, the Motorizzazione Civile asks for a medical assessment of the patient by the local health care agency. The medical assessment may include both physical and cognitive evaluation. Based on the results of the medical assessment, the Motorizzazione Civile either accepts or rejects the revocation request. Driving license may be also revoked by Motorizzazione Civile through the periodic mandatory assessment of the physical and mental requisites. The frequence of such mandatory assessments is every 10 years for persons within 50 years of age, every 5 years for persons between 50 and 70 years of age, every 3 years for persons after 70 years of age.

Chapter 18: R. Liperoti and R. Bernabei

3 Assessment of understanding and decisionmaking ability The assessment of understanding and decisionmaking ability is a crucial issue in the evaluation of patients with dementia. Indeed, an impaired ability to understand and make wills may have a dramatic negative impact on patients’ interests. According to the Italian legal ordainment, the ability to act, which implies the ability to understand and make decisions, is acquired naturally after the 18th birthday and it lasts until death (Codice Civile, Artt. 414–432). Nonetheless, the ability to act may be limited or excluded through the procedures of inabiltiation or interdiction. The inabilitation leads to a condition of relative inability. The inabilitated person is considered capable of making acts of ordinary administration but he or she needs to obtain the consent from a legal caretaker or a judge to make acts of extraordinary administration such as buying and selling goods or accepting and refusing inheritage. The interdiction confers to the person a status of total incapability to take care of his or her own interests. The interdicted person loses the ability to act and therefore, he or she must be assisted by a legal tutor nominated by the local court judge. The tutor must act in total respect of the interests of the inter-

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dicted person but needs to acquire judge’s consent for acts of extraordinary administration. Inabilitation and interdiction procedures are ruled by the “Codice di Procedura Civile” (Codice di Procedura Civile, Artt. 712–720). Both procedures may be requested by relatives, a legal tutor, a legal caretaker or a local court. The request needs to be directed to the local Court and it must explicitly state the facts supporting it. The judge in charge to sentence must examine the person gathering information from relatives, friends or medical expert consultation. The entire procedure requires usually long time to be completed. A temporary legal tutor may be nominated by the judge before the completion of procedure.

References Adler G, Rottunda S, Dysken M (2005) The older driver with dementia: an updated literature review. J Safety Res 36(4): 399–407. Epub 2005 Snyder CH (2005) Dementia and driving: autonomy versus safety. J Am Acad Nurse Pract 17(10): 393–402 Codice Civile. Libro I Delle persone e della famiglia; titolo XII Della infermità di mente, dell’interdizione e della inabilitazione. Artt. 414–432 Codice di Procedura Civile. Libro IV Dei procedimenti speciali. Titolo II Dei procedimenti in materia di famiglia e di stato delle persone; Capo II Dell’interdizione e dell’inabilitazione. Artt. 712–720

Chapter 19

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: THE NETHERLANDS Marcel G.M. Olde Rikkert

1 Introduction

2 Competence in Dutch

As in other countries, questions with regard to decision making in dementia in the Netherlands have to be solved within a medical, legal and ethical framework. The legal framework is primarily built on four laws: the bill that regulates the patient-physician relationship in medical diagnosis and treatment, the bill that regulates admission into a psychiatric hospital against one’s will, the bill that regulates how medical research should be carried out, and the special bill on guardianship for non-financial decision making. None of these bills describes the way in which the competence to consent should be assessed, nor do they give a framework or present preconditions for such an assessment. However, these bills are the legal background for the assessment of competency to consent.1 In the Dutch dementia guideline published in 2005 (www.cbo.nl) recommendations have been made to assess competence based on scientific evidence, on this legal background, on a guideline published earlier on this topic by the Royal Dutch Medical Society, and on consensus among leading experts in the field on how to assess competence in medical practice. Here we will briefly summarize these recommendations and thereby describe the current practice on the assessment of competence for medial procedures, for participation in research, for driving, financial affairs (testaments) and advance directives.

The Dutch wording for competence is “wilsbekwaamheid” or “beslisvaardigheid”. Both words refer to the ability to reach a reasonable judgement on one’s interests in a specific matter. This description is used in all Dutch laws that say something on decision making competence. Competence to make a decision is often regarded as equal to the competence to give informed consent for a certain matter. Evaluation of decision making competence therefore is often carried out by assessing whether subjects meet the criteria for proper informed consent. Consensus based, Dutch medical and legal practice generally divides competence for informed consent in four levels:

1

In Dutch the three care related laws are: Wet op de Geneeskundige Behandelovereenkomst (WGBO), de Wet Bijzondere Opnames Psychiatrische Ziekenhuizen (BOPZ) en de Wet op het Mentorschap, respectively.

(1) The ability to make a choice and to make this choice known; (2) The understanding of the information connected to the decision to be made; (3) The ability to weigh this information, including risks, burden and potential benefits of diagnostic and treatment options, and the possible alternatives; (4) Being able to process this information rationally. Additionally, it is felt that emotions, identity and relationships may also determine competence to consent to a certain level (Widdershoren and Berghmans, 2002). Though widely accepted, objective assessment of these domains is even more complex and currently cannot be based on valid diagnostic instruments. Therefore, the questions of competence to consent most often are referred to psychiatrists in

Chapter 19: M.G.M. Olde Rikkert

the Netherlands, who are accepted to be experts not only with regard to cognition, but who also are able to weigh will, emotion, mood, personhood and pathology within these mental domains. Furthermore, there is broad consensus on the fact that competence depends on the context and the subject to be discussed, and that this ability may change over time, also within a short while. In practice however, repeated assessments for competence are only carried out very rarely. Legally, all physicians are allowed to judge whether their patients are capable to consent, and this only should be explicitly questioned and investigated when behaviour gives rise to serious doubts on competence. Otherwise, patients are accepted to be competent. In general, it is accepted, as the dementia guideline also states that dementia diagnosis does not equal incompetence. However, in clinical practice this is not always properly taken into account. Physicians do not all get formal training in assessment of competence, and therefore are not all warned for common pitfalls in investigating competence with regard to medical or non-medical decision making.

3 Competence for medical decision making Formally, dementia diagnosis is accepted to be of no or only limited value in the assessment of competence to consent, and it is widely accepted that a valid assessment requires a specific investigation, which goes beyond diagnosis (Schmand et al., 1999). The Dutch dementia guideline mentions some possibilities: (1) Unstructured clinical judgement by a medical specialist. Usually the principle of “proportionalism” is used in such a competence judgements. This means that as the impact of the decision in increasing, the criteria to judge a person as capable to consent become more and more strict. (2) Neuropsychological tests may be used as a tool towards good judgement on competence, but are accepted not to replace clinical judgement. The Mini Mental State Examination is often used

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as first line screening instrument, to get a rough idea of memory function and other cognitive functions. Other, more sophisticated tests may also be used for this purpose (e.g., Camcog, Cantab, etc). Having judged a patient as incompetent, physicians still are obliged to inform these patients, adapted to their understanding, and ask them orally for agreement with the treatment plan. (3) At some places, but primarily in the context of research, clinical vignettes may be used for the assessment of competence (Vellinga et al., 2002). In general within the Netherlands, vignettes and specific assessment tools such as MacCat-T/R are accepted to be of use, but they are not replacing clinical judgement, both because of lack of experience and insufficient feasibility in busy daily practice.

4 Competence for participation in research In the Netherlands Medical experiments are subject to the Act on Medical Research Involving Human Subjects (WMO). This Act covers scientific research in which people are subjected to interventions or have to follow established behavioural rules. The WMO has been in force since 1 December 1999, but has been revised since March 2006 to take account of the implementation of the EU Good Clinical Practice Directive (2001/20/EC). The website of the national institute (CCMO) that safeguards execution of the WMO (www.ccmo.nl) asks researchers (as one of the many questions that have to be answered to acquires ethical approval) whether they want to conduct research with subjects incompetent to consent. However, this website does not tell how this competence should be assessed. In research practice this lead to a wide heterogeneity in assessing competence, ranging from no formal assessment to assessment with the Mac-CAT-Research tool (Olde Rikkert et al., 2005). The CCMO states that if a patient is considered incapable to consent, using the best methods available to judge capacity for a specific study, a represent-


Practice of competence assessment in dementia: The Netherlands

ative has to give informed consent. According to the WMO this may be a legal representative, the partner, parents, children, and brothers or sisters. However, the WMO also does not give details how this so called third party should give informed consent. The assessment of competence of the representative is also not discussed, but still this may be a highly relevant issue. This leaves important questions to be solved, for example because these third parties may have interests of their own in the study. Interests of relatives can be related to information on their genetic status, but also to an interest in the development of a therapy for AD by means of the study. When relatives of an incompetent person have more interests in the participation in research of their incompetent relative than the incapacitated relative him/herself, it can be disputed whether these relatives are still the most adequate persons to give consent as a third party. Are they still able to decide in the best interest of their relative, and are they themselves competent to consent? Or do the interests they have disqualify them as representatives who may give consent? And if a nearest proxy is disabled, who next should consent on behalf of the incompetent adults, or should patients be excluded from research participation in such cases? In practice, the problematic assessment of competence for the decision on research participation, and the risk of conflict of interest of proxies is often circumvented by the so called “double consent procedure”. In this procedure a proxy consents for research participation and the research subject also gives written informed consent, or at least agrees verbally (the so-called “assent”). This double consent or addition of the subject’s assent is relevant, because with decreasing competence, persons may become more risk aversive (Verheggen et al., 1998). This also may counterbalance proxies, who might have a preference for participation in specific studies, because of other than only best interest arguments.

5 Competence for driving license Within the Netherlands, by ministerial traffic regulation the diagnosis of dementia still is judged equal to incompetence to drive a car. Thus, driving licences are retracted when the national institution (www.cbr. nl) is notified of a dementia diagnosis by a physician, a family member or patient him- or herself. In practice however, neither patients nor families are obliged to mention their diagnosis to the driving license agency, while physicians often feel restricted by the Hippocrates oath, which also promises professional secrecy. In short, this presents an urgent dilemma, which often causes problems in clinical assessment of patients in Dutch memory clinics. Patients are very reluctant to give up driving privileges and often consider their driving as being safe, while family members do not dare to challenge this assertion and physicians feel restricted in their ability to actively solve this problem. In case the driving licence agency is notified of cognitive problems, without that its having being formally stated as a diagnosis of dementia, the formal testing of driving capacity, which currently is the gold standard test, will be performed. However, it is still highly arbitrary with whom this test is performed and with whom it is not. Thus, the best test of assessment of competence for driving currently is not adequately positioned. At the moment new regulations are prepared by the ministry of traffic, and it is hoped that some sort of formal driving test will be properly embedded in the new procedure of assessment for competence for driving. Moreover, the communication on and interpretation of dementia diagnosis, and other levels of cognitive decline, has to be updated towards current state of the art in this specific area of dementia-related research.

6 Competence in financial decisions Until very recently, lawyers, and sollicitors in the Netherlands played a key role in assessment of competence for financial decision making, such as writ-

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ing a testimony, without a certain description or guideline on how this should be done. This gave rise to many legal procedures, in which family members disputed these implicitly made legal judgements. From 2006 onwards however, there is a guideline for professionals working in court or with relevant financial responsibilities (inspired by the MacCAT-assessment tools for competence) which should be used for the assessment of competence. Assessment of competence, when formally targeted, should now be carried out by asking several questions with regard to the decisions to be made. This really allows the assessment as to whether a client is able to adequately judge his or her interest in a certain case. Of course, the guideline also suggests to ask for a medical expert opinion when serious doubts arise on competence to consent. Altogether, this is an enormous step forward in current practice of competence assessment. Now legal practice should focus on implementation, teaching and training according to this guideline.

7 Competence for declaring living wills Living wills are potentially having an important impact on future decision making, both in medical and non-medical decisions. Dutch law very strongly authorizes the legal value of such wills when they are written in a state of being able to adequately judge one’s own interests. However, here again it is not specified how this competence should be assessed. Thus, sharp problems may and sometimes do arise when later, after months or years of disease progression, a living will should be followed. Judging the competence to declare a living will, at a time period months or years ago, is very difficult and often impossible, resulting in living wills that may not be followed. Some living wills themselves, of which many paper versions are available within the Netherlands, require that the patient does some explicit statements on his or her mental competence for decision making. However, without an objective assessment of competence by a professional with experience in this field, even this

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self declaration of competence has insufficient reliability and validity when it comes to important decision making. Though in foreign countries the idea may exist that most of the Dutch end of life decisions are based on living wills (or declarations for euthanasia), this is far from reality. Living wills are used in a minority of the cases in which end of life decisions have to be made. Nevertheless, this also is an area of competence assessment, which could still be arranged better within the Netherlands.

8 Conclusion Depending on the context of decision making, the assessment of competence within the Netherlands has to fulfil specific ethical and legal conditions, as detailed in laws on medical research, treatment agreement and guardianship. However, so far there is only limited attention to clearly describing the procedures of assessment of competence for the medical and non-medical professionals, who are given the authority to perform these assessments. Both in competence assessment for diagnostic and treatment decisions, for driving licence, for participation in research, for financial decision making and for stating living wills, there is room for improvement in daily practice. Research is needed to develop procedures for competence assessment that are both feasible, valid and fit for the specific area of decision making. Implementation of guidelines already available, and training professionals in these skills, should have high priority on the agenda’s on quality improvement. Dutch professionals, patients and families have to be carefully guided and trained in the assessment procedures of competence to be able to sail safely between the Scylla of avoiding that competence is assessed too often, and the Charybdis of not assessing competence adequately, because both may result in decisions, from which the frail elderly subjects may suffer.

Practice of competence assessment in dementia: The Netherlands

References Widdershoven G, Berghmans R (2002) Wilsbekwaamheid in de ouderenzorg. Tijdschr Gerontol Geriatr 33: 201–06 Schmand B, Gouwenberg B, Smit JH et al. (1999) Assessment of mental competency in community-dwelling elderly. Alzheimer Dis Assoc Disord 12: 80–7 Vellinga A, Smit JH, Leeuwen E van et al. (2002) De beoordeling van wilsbekwaamheid bij ouderen met en zonder cognitieve stoornissen: de vignetmethode nader bekeken. Tijdschr Gerontol Geriatr 33: 207–11

Olde Rikkert MGM, Lauque S, Frolich L, Vellas B, Dekkers W (2005) The practice of obtaining approval from medical research ethics committees: a comparison within 12 European countries for a descriptive study on acetylcholinesterase inhibitors in Alzheimer’s dementia. Eur J Neurol 12: 212–17 Verheggen FWSM, Nieman F, Jonkers R (1998) Determinants of patient participation in clinical studies requiring informed consent: why patients enter a clinical trial. Patient Educ Couns 35: 111–25

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Chapter 20

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: NORWAY Knut Engedal and Øyvind Kirkevold

1 Competence and legal capacity In the discussion about legislation and dementia in Europe, it seems there exist an agreement that the terms “competence” and “incompetence” should be restricted to a person’s legal status, whereas physicians should use terms like “capacity” and “incapacity” when evaluating a person’s mental status (Post and Whitehouse, 1995). However, some authors prefer to use the terms “capacity” or “incapacity” for legal status (Gove and Georges, 2001; Jones, 2001). Thus, “capacity” and “competence” are used as synonyms in legal terminology. In cases when a person is incompetent, most Western countries have legal provisions that allow for the appointment of a guardian to handle an adult person’s welfare and financial interests (Gove and Georges, 2001; Kapp, 2001). Apart from that, medical treatment, care or admission to an institution without the patient’s consent is usually part of the mental health legislation.

2 Legislation in Norway In Norway, the patients’ rights have been a public concern for several years. A white paper investigating the topic where published in 1992 (NOU 1992:8) and the Patients’ Rights Act (PRA) passed the Norwegian parliament the 2 July 1992. The PRA gives patients right to emergency care, right to evaluation of his/her health condition and right to a re-evaluation. On the other side the municipalities (Act no. 66 of 19 November 1982 relating to Municipal Health Services) and the hospitals (The specialist health care act 1999) are entitled to give necessary health care.

In the PRA adult patients are given full autonomy over the health care by giving the patient widely rights to participation and information regarding medical treatment and care (Chap. 3). “If an adult patient is obviously incapable of safeguarding his or her own interest due to physical or mental disorder, senile dementia or mental retardation, both the patient and his/her next of kin are entitled to information” (Sect. 3.3). The health worker that gives the information to the patient has a clear obligation to do what is possible to make the person understand. In Sect. 3.5 it is stated: “Information shall be adapted to the qualification of the individual recipient, such as age, maturity, experience and cultural and linguistic background. The information shall be provided in a considerate manner. As far as possible, health personnel shall ensure that the patient has understood the contents and significance of the information.” Health care may only be provided with the patient’s consent, unless legal authority exits or there are other valid legal grounds for providing health care without consent (Chap. 4). Valid legal grounds are if the patients receive care under the Psychiatric care legislation or if a patient is of full legal age and legal capacity is not competent to give consent (Section 4.6). Section 4.6 in the PRA gives procedures for proxy consent to health care of patients are obviously incapable to consent, but healthcare by proxy consent may not be provided if the patient objects thereto. Since patients with dementia rarely are under psychiatric healthcare, the sentence “obviously incapable…due to…senile dementia” is the only possibility the healthcare system has to omit the person with dementia’s autonomy regarding medical treatment,

Chapter 20: K. Engedal and Ø. Kirkevold

care and placement in institution. There are no other definitions of obviously incapable or criteria for being in such a state. In Norway there is a Legal incapacity Act from 1898. This Act describes procedures to put a person under legal guardians. In Norway, persons are rarer than seldom put under legal guardian due to dementia and this act has no practical implication when judging a persons competence. A revision of the PRA is expected to pass the parliament during the autumn 2006. In this revision it is suggested that under certain circumstances shall be possible to provide necessary healthcare even if a patient resist. It is no further definition of “incapable” in this revision.

3 Assessment of competence In the legalisations in Western countries the principle of autonomy is strong. Autonomy is defined as the capacity to think, decide and act on the basis of rational thought (Harrison, 1993; Hillan, 1993). It is an important question whether or not demented individuals are capable of autonomous thought and actions. Harrison (1993) concludes that persons with dementia probably are capable of autonomous actions in the early stages of the disease, but that they later on lose their autonomy. Wilkinson (2001) has set up three aspects that must be considered when judging the autonomy of persons with dementia. Firstly, a diagnosis of dementia does not automatically mean a judgement of incapacity, as the person may still be able to make a range of decisions. Secondly, persons with dementia are a heterogeneous group with respect to cognitive capacity and decision-making capacity. Thirdly, an individual’s level of understanding can vary according to the nature or complexity of the decision to be taken. In addition it is important to consider the consequences of a decision. Low-risk consequences can offset limits in capacities, whereas high-risk consequences require a more stringent assessment (Post and Whitehouse, 1995). How the decline of functional capacity in different areas is

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related to “legal competence” (or “legal capacity”) to make decisions is complicated and needs an individual assessment in each patient. These aspects are discussed in Norway among stakeholders, health personnel, policy makers and law smiths, but it is far from implemented in the Norwegian legislation. Some aspects are due to be implemented in the near future. Since 1990 issues related to dementia, such as how to carry out a diagnostic work-up, medical treatment and care, and how to evaluate driving capacity have been focused in national programs in Norway. As a result diagnostic tools and national guidelines for diagnostic work-up, treatment and care have been developed. Guidelines how to assess the driving capacity of a person with dementia has also been suggested Methods and guidelines how to assess the competence of persons with dementia have not been developed. Even though the diagnostic tools do not contain items that measure competence, several aspects of legal capacity can be evaluated by using the diagnostic tools, following the principle outlined by Wilkinson (2001). Judgment of the competence or capacity of a person with dementia therefore, will be done in several ways, depending on physicians’ and nurses’ knowledge and experience about dementia. In nursing homes where the prevalence of severely demented patients is extremely high doctors and nurses have to deal with this question daily. Normally, they will not use standardised methods in the judgment of competence, but relay on their experience and diagnostic tools used, using Wilkinson’s three principles. The same is the case when a patient is referred to a specialised memory clinic at a university hospital. Even though many doctors use a systematic and individual approach to assess a person’s competence, this is not always the case. To ensure that all people with dementia are assessed adequately, improvements must be done within several areas. It is a challenge to implement diagnostic tools and standards for evaluation to personnel at various levels of health care, and to adjust the tools according to new knowledge. The diagnostic tools used for evaluation

Practice of competence assessment in dementia: Norway

of dementia explicitly and assessment of competence implicitly have been improved the last fifteen years, but there is a long way to go.

References Gove D, Georges J (2001) Perspectives on legalislation relating to the rights and protection of people with dementia in Europe. Aging Mental Health 5(4): 316–21 Harrison C (1993) Personhood, dementia and the integrity of a life. Canad J Aging 12(4): 428–40 Hillan EM (1993) Nursing dementing elderly people: ethical issues. J Adv Nurs 18(12): 1889–94

Jones RG (2001) The law and dementia – issues in England and Wales. Aging Mental Health 5(4): 329–34 Kapp MB (2001) Legal interventions for persons with dementia in the USA: ethical, policy and practical aspects. Aging Mental Health 5(4): 312–15 Post SG, Whitehouse PJ (1995) Fairhill guidelines on ethics of the care of people with Alzheimer’s disease: a clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer’s Association. J Am Geriatr Soc 43(12): 1423–29 Wilkinson H (2001) Empowerment and decision-making for people with dementia: the use of legal interventions in Scotland. Aging Mental Health 5(4): 322–28

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Chapter 21

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: POLAND Andrzej Kiejna, Joanna Rymaszewska, and Tomasz Hadrys´

1 Introduction Based on expert opinion, it has to be stated that the English word “competency” does not have an unambiguous synonym in Polish. It can mean in the first sense, in legal terms – which is the ability to act in legal matters, and less commonly, in the second sense, it can pertain to „competence” and words derived from this stem (Flisiak, 2003). In this article competency should be understood in legal terms, since the wider meaning of the word cannot be exactly conveyed in Polish. It could be said that it is a relatively new concept, which only now is being researched and defined (Morasiewicz, 2000). This new understanding of „competency” allows it to be understood independently of the definition in legal terms (Da˛browski, 1998). According to Safjan the ability to express agreement is not an expression of will in a strict sense, but belongs to a different juridical category from the ability to act in legal matters (Safjan, 1998). Safjan states, that the ability to express agreement does not lead to actions having legal consequences, but is a “personal good” – the ability of autonomous decision making. The relations of individuals with society, including the health service, is regulated in various legal acts, in which various concepts connected with the word “competency” appear. Polish medical law, which also pertains to psychiatry, distinguishes between the sources and principles of law (Da˛browski et al., 2006). The most important categories of these sources are: – –

The Constitution of the Republic of Poland, The Medical Ethical Code, which regulates almost all the essential issues of medical law, such as patients’ rights and informed consent,

–

The European Convention on Human Rights and Dignity of Human Beings Regarding Applications of Biology and Medicine.

The European Convention from 11th November 1996 contains complex regulations of all the relevant medical and psychiatric issues, such as the principle of free and informed consent and protection of persons incapable of expressing it. The principles of medical law, similarly to the sources, do not have a normative character, but are contained in sources and serve as generalizations of detailed norms. The most important principles associated with psychiatric proceedings are: –

–

–

the principle of the patient’s good (salus aegroti suprema lex est) and its specific directives: equal access to medical health care services, appropriate medical care, the principle of protecting a patient’s dignity, regulated in the Health Care Facilities Act – HCFA (the right to intimacy and the respect of dignity) and in the Physician’s Profession Act – PPA (the obligation of keeping patients’ medical information confidential), the principle of protecting a patient’s autonomy by related detailed directives, such as a patient’s right to express free and conscious consent and the conditions under which medical intervention is to be carried out without a patient’s consent (PPA).

The main constitutional regulations in medical and psychiatric matters are cited in various paragraphs in the Constitution (1994), where is stated that “the inherent and inalienable dignity of any person shall

Chapter 21: A. Kiejna, J. Rymaszewska, and T. Hadrys´

constitute a source of freedoms and rights of persons and citizens. It shall be inviolable. The respect and protection thereof shall be the obligation of public authorities.”

2 Capacity to enter into a contract, including financial affairs According to Polish law, there are no so called natural incompetencies in legal terms caused by the mere fact of having a psychiatric disease or mental disability. Competency as interpreted in the Polish legal system is understood as the ability to carry out actions in legal matters in one’s own name, i.e., to understand expressions of will and express one’s own will aimed at creating, changing or dissolving legal relationships, in other words, the ability to independently shape one’s legal position (obtain rights and assume responsibilities). The ability to act in legal matters is regulated in detail by the Civil Code (1964). In the Civil Code personal rights, especially health, liberty, honour, freedom of conscience, surname or pseudonym, image, confidentiality of correspondence, protection of home and family, scientific, artistic, inventive and rationalizing activities are protected, regardless of other legal provisions providing such protection. Additionally any statement given by a person, who for whatsoever reason was in a state excluding the possibility of conscious or free decision making and expression of will, is invalid (Art. 82). This pertains in particular to mental illness, mental retardation or other, even temporary, disturbance of mental functioning (Da˛browski et al., 2006). Competency to act in legal matters may be full, limited or lacking. Adult individuals have full competency (§ 11) to act in legal matters (and thus not all individuals have such competency, unlike legal responsibility, which each individual possesses), as well as all corporate bodies. Minors, who are at least 13 years of age, have limited competency to act in legal matters, as well as individuals who are partially incapacitated and individuals who have been assigned a temporary legal adviser by the courts during pro-

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ceedings assessing whether the individual has limited competency (§ 15). According to Polish law, minors of less than 13 years of age and individuals who are totally incapacitated are not legally competent (§ 12). According to the Civil Code, the mere fact of having a psychiatric disease is not a sufficient condition to state an individual is not legally competent, incompetence only applies in cases where an individual does not have control over his own actions. Not every psychiatric disease is associated with such effects. The effects depend on the nature and the acuteness of a disease, as well as the individual symptoms observed in an individual. Hence, apart from the diagnosis of a disease (or mental retardation or other psychiatric disorder), the opinion of an expert psychiatrist is needed. This opinion should contain a detailed assessment of an individual’s ability to control his/her own actions, based on an in-depth analysis of the individual’s behaviour/actions, contact with others, e.g. family members and at work. In criminal law there is a concept of an intermediate state, in which the competence (responsibility) of an individual may be said to be diminished to a significant degree, which may be used in sentencing. This concept does not appear in civil law (Radziwiłłowicz and Gil, 2004). Unambiguous categorization of an individual’s competency to act in legal matters, including testing, is often impossible.

3 Capacity to enter into marriage According to the Family and Protective Code (Art. 11) an entirely incapacitated person cannot marry (§ 1). Because of the incapacitation each of spouses can demand annulment of a marriage (§ 2). It isn’t possible to annul a marriage because of the incapacitation if the incapacitation was overruled (§ 3). A person touched with mental disorder or the mental deficiency also cannot marry (Art. 12. § 1). For if the state of the health or the mind of this sort of person isn’t threatening the marriage or the health of the future offspring and if this person wasn’t entirely in-

Practice of competence assessment in dementia: Poland

capacitated, the court can allow her to marry. Each of spouses can demand annulment of a marriage because of mental illness or the mental deficiency of one of spouses (§ 2). It is not possible, however, to annul a marriage because of the mental illness of one of spouses after this illness had receded (§ 3).

4 Advance directives and end of life decisions There are no legal acts regulating the possibility of advance directive and end of life decisions.

5 Consent to treatment, hospital or nursing home admission In Physician’s Profession Act there are the statements that (Art. 32. § 1) a physician may conduct an examination or provide other medical services, with the exception of conditions stated within this Act, only after obtaining a patient’s consent. Additionally (§ 2) in cases of minors or those incapable of expressing conscious consent, the consent of their legal representative is required. If a subject has no such representative or communication with him/her is impossible, consent is given by the Guardianship Court. Additionally, examining or providing a patient with any medical service without his/her prior consent is allowed only when immediate medical attention is required due to a patient’s medical condition, or when due to advanced age a patient is incapable of expressing his/her will and contact with that patient’s legal or de facto representative is impossible (Art. 33. § 1). Finally, the concept of “competency assessment in dementia” may also apply to hospitalization in a psychiatric ward without an individual’s agreement. Article 21, § 1 of the Mental Health Act (1994) states that “a person whose behaviour indicates that, due to mental disorders, he/she may pose an imminent danger to his/her own life or life or health of others, or a person incapable of satisfying his basic vital needs self-sufficiently, may be subjected to a psychiatric ex-

amination also without his/her consent; if the person is a minor (under 18 years of age) or totally incapacitated, the consent of his/her legal representative shall not be required either…”. In turn, § 2 states that “the necessity of conducting the examination referred to in § l shall be ascertained by a psychiatrist or – if the assistance of a psychiatrist is unavailable – by any other physician. Prior to the examination the person concerned or his/her legal representative shall be informed of the reasons for being examined without consent”. According to Art. 38 a person who, due to mental illness or mental retardation, is incapable of selfsufficiently satisfying his/her basic vital needs, has no possibility of obtaining care from others and needs continuous care and nursing services but does not require hospital treatment, may be admitted to a nursing home with his/her own or his/her legal representative’s consent. If the person referred to in Art. 38 or that person’s legal representative does not give consent to admission to a nursing home, while lack of care poses a risk to that person’s life, a social welfare agency may apply to the Guardianship Court appropriate to the person’s place of residence and file a motion for his/ her admission to a nursing home without that person’s consent (Art. 39). The motion referred to in § l may also be filed by the head of a psychiatric hospital if a hospitalized person is incapable of self-sufficiently satisfying his/ her basic vital needs, requires continuous care and nursing but does not require further treatment in that hospital (§ 2). If the person in need of referral to a nursing home, due to his/her mental state, is incapable of giving his consent, the Guardianship Court shall adjudicate the referral of such a person to a nursing home (§ 3). All of these legal acts, including those directly related to medical care, fail to consider advanced age or individual conditions, e.g. dementia. The standards regarding the treatment of individuals with dementia are thus covered in the regulations regarding adults (above 18 years of age).

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6 Testamentary capacity According to the Art. 944 of Civil Code to write out and to revoke the will can only person having the full active capacity. The will is invalid if it was written out in the state turning off conscious or free coming to the decision and the expression of will (Art. 945).

disorders must fulfil, in order to hold a driving license (DVLA, 1996). The responsibilities of doctors, including psychiatrists, to inform patients about any restrictions on an individual due to his/her health are also regulated. The American Psychiatric Association has also introduced such regulations (Reifler, 1995).

8 Competency assessment procedures 7 Driving and dementia Polish driving licenses are normally granted for an unlimited period. According to Art. 90 of the Highway Code the driving license receives person who got the medical statement about the lack of health contraindications against driving and the psychological statement about the lack of psychological contraindications against driving provided it is required. Testing the state of health and psychological predispositions for steering vehicles is regulated by Art. 122. The medical assessment is carried out in case of: (1) person applying for the driving license or the certificate to the qualifications, (2) person applying for restoring the entitlement for driving withdrawn on account of the state of health, (3) driver directed by the body of the road control, if: (a) participated in a road accident, in which someone was killed or wounded, (b) drove in an intoxicated state, (4) driver directed with decision of county official in cases of safety, such as for the state of health. There are no legal regulations for physicians or social care regarding cases in which an individual develops a condition which negatively influences his/her ability to drive (Kloszewska and Kwiecin´ska, 1997). Regulations in place in various countries, e.g. the United Kingdom (“An At a Glance Guide to the Current Medical Standards of Fitness to Drive”) clearly define the criteria that individuals with somatic and psychotic

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No official procedures or professional standards have been defined in order to assess legal competency. None of the following criteria for assessing competency appearing in the literature – Roths competency to agree to medical intervention, Somerville’s theory of emotional competence, Drane’s Risk Dependent Competence – neither have been subject to wider discussion nor have inspired clearly defined standards for such procedures (Da˛browski, 1998). An assessment of competency is based on an interview and psychiatric examination given by a doctor or psychiatric specialist. The doctor’s decision depends to some degree on this examination and his/her knowledge and skills. Questions regarding the choice of a psychiatric specialist are addressed in very general terms, do not contain any strictly defined regulations regarding the qualifications of a specialist and the form of an examination to assess competency or mental capacity. The creation of appropriate regulations on qualifications and provision of training in the field of forensic psychiatry and psychogeriatry need to be addressed in the near future. The formation of the Polish Association of Geriatric Psychiatry and the Polish Association of Forensic Psychiatry in the last two years are independent initiatives, which give reason for hope. These organizations are aiming to create appropriate training programs for specialists in these areas, which may help to solve various problems in the field of legal medicine.

Practice of competence assessment in dementia: Poland

9 Research and dementia Regulations concerning conducting the research studies in Poland are included in Physician’s Profession Act. The person which is supposed to be subjected to medical experiment is being informed of objectives, methods and conditions of carrying out an experiment, expected healing or cognitive benefits, the risk and possibilities of withdrawing from the participation in experiment in every stage (Art. 24. 1). Carrying out medical experiment requires the written consent of the examined person being supposed to participate in it. If a person who cannot express his consent in a written form is to participate in the experiment it is possible to express the consent in an oral form in the presence of two witnesses what should be conformed with witnesses’ signatures in the research documentation. (Art. 25. 1.). In the case of the entirely incapacitated person for the participation of this person in healing experiment a statutory representative of this person is giving his consent. If such a person is able with the insight to voice opinion in the matter of his/her participation in healing experiment, moreover getting the written assent of this person is necessary. In the case of the person who has the full legal capacity but isn’t able with the insight to voice opinion in the matter of his participation in experiment, for the participation of this person in healing experiment a guardianship Court is giving its assent appropriate on account of the residence of the subject carrying out an experiment. In case the legal representative refuses to accept the participation of the sick person in healing experiment, it is possible to turn to the guardianship Court appropriate on account of the residence of the subject carrying out an experiment for its consent. With the application for giving the agreement on the participation in medical experiment of this person, a subject carrying out an experiment can appear to the protective court appropriate on account of the residence of this subject. In cases requiring no delays and on account of the imminent danger to life, getting the assent isn’t necessary.

Medical experiments can be carried out exclusively after a positive opinion on the project has been expressed by the independent bioethical committee. Persons having high moral authority and high specialist qualifications are to be appointed for the composition of the committee (Art. 29. 1). The Bioethical Committee expresses the opinion about the medical experiment, according to the resolution, and considers ethical criteria and the appropriateness and the feasibility of the project.

References Civil Code of April 29, 1964, 1994 Acts Register No. 84, pos. 386 Constitution of the Republic of Poland. Text passed on the 2nd of April 1997 during The National Assembly. Acts Register No. 78, pos. 483 Da˛browski S (1998) The capacity for genuine voluntary commitment in the mentally ill: selected aspects. Post Psychiatr Neurol 9 (Suppl 1): 11–18 Da˛browski S, Kiejna A, Rymaszewska J (2006) Legal report – Poland. In: (Kallert TW and Torres-Gonzalez F, eds.) Legislation on coercive mental health care in Europe. Legal documents and comparative assessment of twelve European countries. Peter Lang, Frankfurt am Main, pp 219– 47 Flisiak J (2003) (Ed) The New Kosciuszko Foundation Dictionary. Universitas, Cracow Kloszewska I, Kwiecin´ska E (1997) Motor vehicles driving by people with mental disorders. Post Psychiatr Neurol 4: 457–60 Medical Advisory Branch of the DVLA (1996) At a glance guide to the current medical standards of fitness to drive. DVLA, Swansea Mental Health Act (MHA) of August 19, 1994, Acts Register 1994, No. 111, pos. 535 Morasiewicz J (2000) The criteria for making decisions on behalf of the incompetent patient in Polish medical law. Post Psychiatr Neurol 9 (Suppl 1): 95–100 Radziwiłłowicz P, Gil K (2004) Dilemmas in forensic opinioning in inheritance issues. Psychiatr Prakt Ogólnolek 2: 63– 66 Reifler BV (1995) Position statement on the role of psychiatrist in assessing driving ability. Am J Psychiatry 152: 819 Safjan M (1998) Law and medicine. Instytut Wymiaru Sprawiedliwos´ci, Oficyna Naukowa, Warsaw

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Physician’s Profession Act of December 5, 1996, Acts Register 1997, No. 28, pos. 152 Family and Protective Code. Act of February 25, 1964

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Highway Code, Act of June 20, 1997. Acts Register 2002, No. 25, pos. 253

Chapter 22

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: PORTUGAL Horácio Firmino, Pedro Silva Carvalho, and Joaquim Cerejeira

1 Introduction Elderly people and namely those who are diagnosed with dementia have similar rights and duties compared with the others Portuguese citizens since their juridical capacity is not limited by age. However, one should attend to their reasoning status and ability of understanding and deciding. Portuguese Constitution (the fundamental law to which other national laws are submitted) refers particularly to elderly on article 72 in the following terms: (1) Elderly people have the right to economic security and home, familiar and social support conditions respecting their personal autonomy avoiding and surpassing isolation or social marginalization. (2) Policy for the elderly consists of economic, social and cultural measures in order to allow opportunities of personal fulfilment to elderly people, through an active participation in community life. In relation to the rights of elderly people one should also remember some aspects of the Portuguese law: –

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descendents are obliged to give “food support” to their ascendants, which means everything that is needed for nourishment, lodging and clothing; in case of incapacity of the elderly person, only one appointed legal tutor is responsible for representation and management of his/her person and property;

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the landlord has restricted rights to cancel rental agreement when the house renter is more than 65 years old; an elderly person can never be forced to live in a nursing home or similar facility; should this occur against his/her will it will be considered an act susceptible of criminal procedure; all facilities with profitable purpose must have their internal rules placed in a location with good visibility; it must be celebrated a legal agreement of lodging and caregiving between nursing home resident and the owner; all residents have right to intimacy and privacy.

2 Protection measures for elderly unable to defend their rights Elderly people whose mental faculties and physical capacities are weakened by age or illness even showing incapacity of expressing their will must be protected. The present Civil Code defines two protective regimes for people handling with physical and/or mental incapacities and who need support to decision making. They are Interdiction and Inabilitation. This restriction of rights must be required to juridical services (courts of law), usually by close relatives. It should be object of assessment by a psychiatrist ( forensic psychiatric competence is not required) who, after a judge questioning, makes an expert evaluation with description of examination and conclusions. The defensive lawyer (elderly representative), the republic prosecutor delegate (representative of the state)

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have the opportunity to formulate questions or state against the act. Finally, the judge in possession of the data of the assessment and considering all the raised questions will pronounce for the capacity or incapacity in the form of interdiction or inabilitation. Interdiction respects to the person who is on an usual incapacity condition of ruling him/herself or his/her patrimony due to a psychiatric disorder, deafness or blindness (Article 138 of Civil Code). To apply this measure it is necessary that a family member requires the interdiction and that a curator is appointed by the family council. The curator becomes the interdicted person’s representative and is responsible of taking all the necessary measures respecting the subject and patrimony administration. Interdiction affects only a very small number of elders and usually is applied to people with serious mental illness. Inabilitation is applied to patients with psychiatric disorder, deafness or blindness which, although with permanent character, is not so serious as to justify interdiction (Article 152 of Civil Code). Subjects are assisted by a curator or a counsel (Article 153 of Civil Code) to help them when incapable of expressing a free informed consent, of taking care of themselves or administrating their patrimony in consequence of an illness, a disorder or any other weakness compromising their mental and physical capacities. It is a temporary protection measure specially conceived to avoid patrimony dilapidation. Should some worsening or improvement occur in the subject’s state any of these measures may be modified, after request of the proper, of the family and/or the curator.

3 Testamentary capacity The decision of making a will and/or donation or selling patrimony follows the general Portuguese law. In executing these acts, civil law notaries should evaluate if testator has full understanding of the nature and extent of the procedure. In recent years notaries and lawyers are requesting the expertise of two psychiatrists (even without

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legal obligation to do so) to assess this capacity to people older than 65 years and/or having some type of psychiatric disorder. After evaluation they declare under compromise of honour if the person has capacity to have a reasonable awareness of the act. This request is being made to prevent claims from prejudiced relatives or beneficiaries of the will (total or partially excluded from the acts) and cancellation of the decisions by court appeal. Although dementia is not specifically referred, subject must have understanding of the nature of the act that is being made. Assessment usually explores orientation, concrete and abstract reasoning, calculation. Subject is asked to explain what are the objectives of his presence in that place and finally to tell, by his words, what he pretends to do and if he is aware of the scope and extent of the decision.

4 Health program for elderly people Government’s Program proposes integrated health policies in the health care national plan which promote: development of actions closer to elderly citizens and dependent people; fostering, with adequate and reasonable territorial distribution, the possibility of a more autonomous and better quality life; humanization of healthcare; potentiation of local resources; adjustment to diversity that characterizes individual aging and lost of functionality. It intends to assure an integrated practice of continuous healthcare, promoting the creation of proximity care services in the community and the indispensable articulation among health centres, hospitals, continuous healthcare facilities, palliative healthcare facilities and social support institutions and services. So: By the terms of item (g) of the article 199 of the Constitution, The Council of Ministers deliberates: (1) Adopting the following fundamental principles as guidelines for construction of healthcare to elderly and dependent people:

Practice of competence assessment in dementia: Portugal

1.1. Respect for the dignity of the elderly or dependent human person, namely for the right to privacy, identity, information and non discrimination; 1.2. Incitement of citizenship, translated into the capacity to participate in relationship and collective life; 1.3. Participation of elderly or dependent people, or their legal representative, in the elaboration of the healthcare plan and reference to other available resources in the health service network; 1.4. Respect for the physical and moral integrity of elderly or dependent people, assuring their informed consent, or their legal representative, to procedures or healthcare; 1.5. Family involvement in giving the main care, as a privileged nucleus for the equilibrium and wellbeing of elderly and dependent people; 1.6. Promotion, recovery or continuous maintenance of autonomy, which consists of healthcare suitable for improving autonomy and well-being levels of the users; 1.7. Proximity of care, in order to maintain relational and social support or promoting social insertion of elderly or dependent people; (2) Create, depending on the Minister of Health, a Commission for the Development of Healthcare Services to Elderly and Dependent People, which will be settled by joint dispatch of Minister of Health and Minister of Labour and Social Security. The Commission will have the mission, among other tasks, of proposing an action plan, for future ministerial approval (Minister of State and Finances, Minister of Health, Minister of Labour and Social Security), to predict progressive creation of communitarian and proximity services all over the country. This can be achieved through partnerships promoted by primary healthcare centres with local social solidarity institutions and autarchies, and articulation of primary healthcare centres, hospitals, continuous or long term healthcare centres and palliative and pain healthcare centres. A proposal should be formulated for reviewing existent legisla-

tion in the matter of continuous and long term healthcare.

5 Capacity for informed consent In every medical procedure it is necessary to obtain patient’s and/or family’s consent. Based on general understandment of the Portuguese law one can assume that the search for medical consultation implies an authorization for an assessment consisting in interrogation and physical exam. Complementary diagnostic exams are, in the same way, considered to be authorized except those which imply taking contrast and/or chemical substances. These exams should only be done after an explanation of the procedure and obtainance of a written consent. Prescription and administration of medication, although is does not require written consent, should be also appropriately explained to patients. All surgical treatments and/or with instrumental use equally warrant a written consent, obtained after detailed explanation of objectives, risks and benefits of the procedure. In clinical studies no procedure can be taken without the essential written informed consent signed by the patient who is going to participate in the study. The Portuguese law considers that if the patient does not meet the necessary psychic conditions to understand the study, indications, risks and/or benefits, the signature can be replaced for a written authorization of the family/care giver in the presence of a third person not involved in the study nor the institution where it takes place. The same applies to cases where the subject cannot read and/or sign.

6 Law and driving motorized vehicles European directive (2000/56/CE) was transposed to Decree-Law no. 45/2005 of February 23 which states the following:

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Validation of ability for driving depends on age; Shorter revalidation intervals may be justified for medical or psychological reasons.

Moreover, Decree-Law no. 209/1998 of June 15, in Article 12 says: Medical professionals who, in the course of their clinical activity, treat drivers with illness or handicap, chronic or progressive, or identify psychiatric disorders which may affect the security of driving should advise them to request a special inspection to the local Health Authority and notify that authority with a sustained and confidential clinical report. Although age neither restricts nor imposes the inability to drive, it is considered that, after 65 years of age, the individual should be submitted to shorter intervals assessments with evaluation of medical and psychological capacities to drive. There is the possibility to impose limits to driving if it is recognized some kind of disorder that may affect driver’s condition while the subject is referred to the local health authority to be submitted to an assessment.

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References Carvalho PS, Pinho A (2006) Legislação e programas de apoio para o idoso, in psicogeriatria. Ed. Horácio Firmino, Psiquiatria Clínica, pp 201–13 Dias M, Carlos D (2003) Consentimento informado. Ed. Formasau, Coimbra, pp 7–13; pp 21–25; pp 41–54 Oliveira G (1999) Temas de direito da medicina. Coimbra Editora Oliveira G (2002) Direito da medicina – I. Coimbra Editora Parente P, Queirós P, Firmino F, Gomes C (1998) Ética nos Cuidados de Saúde. Ed. Formasau, Coimbra, pp 9–25; pp 43–53 Pereira A (2004) O consentimento informado na relação médico-paciente: Estudos de direito civil. Coimbra Editora, Coimbra Programa Operacional de Saúde – Século XXI; http://www. saudexxi.org/default.aspx Portal do Ministério da Justiça; http://www.tribunaisnet.mj.pt/ Portal de Direito (verbo Júridico); http://www.verbojuridico.net Portal do Ministério do Trabalho e da Solidariedade Social; http://www.mts.gov.pt/index.php?corpo

Chapter 23

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ROMANIA Nicoleta Ta˘taru

The value of human being is not diminished by even profound forgetfulness S. J. Post

1 Introduction By 2025, it is estimated that the number of persons with dementia will increase to around 600.000 in Romania (WHO). With the increasing prevalence of dementia, issues of competency have become very important. Issues of competence are fundamental to informed consent in research and the care of demented people. Society is equally interested in maintaining the autonomy and well-being of its aging citizens as well as protecting them from risks and dangers caused by their declining capacities. Generally, Romania’s legislation is in keeping with principles set out by the World Health Organisation, United Nations and so on, concerning the protection of people with mental illnesses. The legislation calls for adequate treatment and respect for the human rights of the persons with mental disorders. The most important principles derived from these documents are: respecting the human dignity, recognizing equal civil rights with the others persons, warranting the medical care and treatment and the social, professional and familial rehabilitation. The legal rights, financial and other personal interests of patients with mental disorders must be protected. According to the Madrid Declaration art.4, the psychiatrist should discuss with the family and, when appropriate, seek legal counsel in order to safeguard the human dignity and the legal rights of the patient when he/she is unable to exercise proper judgement due to mental disorder. All psychiatrists face situa-

tions where compulsive interventions are required to safeguard the patients and/or those surrounding him/her.

2 Mental capacity and competency Some of our patients, particularly older people with dementia, may not be able effectively to represent their interests, manage their affairs or agree what they are suggested. This is particularly problematic for patients who are alone and where there is a conflict between individual and family or carers’ interests.

2.1 Global competence The definitions of competency have been moving from a generalized concept of incompetence to a more specific construct of incapacity to perform specific tasks needed to manage critical day-to-day functions, such as the capacity to manage funds and the capacity to make informed decisions about medical treatment (Baker, 1998) Competency is a legal term, defined as having sufficient capacity, ability, or authority. Mental capacity is a functional term and means an individual’s capacity to make certain decisions and to perform certain acts and ability to understand the nature and effects of one’s acts (Art. 5 of the Romanian Mental Health Law 2002). Mental capacity is evaluated by a medico-legal

Chapter 23: N. Ta˘taru

expert after the clinical psychiatric and psychological examination. This expert decides if a person is competent or incompetent as a result of a mental disease, injury or developmental disorder. The incompetent person cannot understand, appreciate and decide on specific issues of one’s daily life.

tions for dementia and age- related cognitive decline include tests or assessments of a range of multiple cognitive domains, typically including memory, abilities, problem solving, and executive functions.

2.2.1 Testamentary and financial capacity Non-competency When the patient is non-competent or partially noncompetent the others should make the decisions on his behalf. In this situation next approaches can be taken: the patient’s best interest, a proxy decision maker or an advance directive. We have to respect the patient’s autonomy, and help the patient to preserve his/her relationship giving information and respecting the confidentiality. Art 948 of Romanian Civil Code gives the definition of legal competence and its exigencies necessary for a legal act: functional capacity, valid consent, motivation and nature of object.

2.2 Specific competence Testamentary capacity such as the competence to create a will, contractual capacity -enter into a contract, donative capacity – make a gift, driving capacity, consent to diagnosis, treatment and research, advance directives, right to die, are often at issue in litigation involving the elderly. In Romania we do not have a standard assessment to evaluate the status of a person’s financial competence or other specific competencies. For global competence assessment we use the same clinical and psychological examination like for diagnosis of mentally ill elderly patients. One of the important goals of the neuropsychological evaluation of the elderly persons is to provide information regarding the functional capabilities of geriatric patients in order to decide upon their ability to live alone, to drive a car, to manage their financial affairs, to have a valid consent to care, treatment and research. Brief mental status examinations are not adequate for diagnosis in most cases. Comprehensive neuropsychological evalua-

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Some people have cognitive impairment that may reduce their capacity to manage their own financial affairs and to make a will. The legal decision to limit a person’s right to manage his or her own finances depends, in part, on an assessment of financial competence. Tribunals and courts may receive information from different sources ( family members, general practitioner, psychologist, social worker, and psychiatrist) and have to use this information in order to make guardianship decisions. Kaplan and Sadock (1991) underlined the psychological abilities necessary to evaluate the testamentary competence. The patient must know: the nature of their property that they are making a will and who are their natural beneficiaries (Webber et al., 2002).

2.2.2 Driving competence There is an obligatory health check every fifth year for all persons. A health check every year beginning with the age of 65 is required for the elderly to keep their regular driving licences. In Romania the doctors have to inform the police monthly about all new mentally ill cases, choosing between to protect the public from persons with mental disorders including dementia, when in traffic, and the ethical obligation to respect the confidentiality.

2.2.3 Consent to diagnosis, treatment and research The principle of autonomy emphasizes the importance of patients having the right to decide on which treatment to choose and the right to refuse treatment

Practice of competence assessment in dementia: Romania

and research. The patient’s valid consent means that he/she has to be: informed, competent and not-coerced. Older adults with dementia may have diminished capacity to make medical treatment decisions and may not be legally competent to engage in informed consent and surrogate consent is required. The professionals continually face the question of whether a person with dementia is competent to refuse or consent to nursing intervention and research. In Romania every medical intervention requires the consent of the patient who has to sign a consent form, apart from emergency cases and if the patients are incapable to have a valid consent due to their mental disorders. For these patients their legal representatives or a medical commission have to sign the consent. Consent to treatment is linked to human dignity and personal liberty. The patients must have the right to refuse the treatment when they believe that their quality of life would be compromised by continued treatment and they must have “the right to die” with dignity. The patients are entitled to know or not to know the diagnosis. We have to inform them carefully about their diagnosis and give full information to the relatives. We have to be sure that the patients understand the benefits, risks and alternatives of the treatment. In the context of incurable illness who decides “not to treat”? In Romania “passive euthanasia” is illegal like in most European countries. Only renunciation of maximal therapy is accepted. In the mean, the rules of the medical treatment also apply to medical research. Elderly persons with or without dementia must be granted equal opportunity for participation in research as all other persons. Involuntary psychiatric treatment is permitted by law, if a person suffers mental disorders including dementia that is dangerous to him/her or others. (The Romanian Mental Health Law, 2002)

2.2.4 Advance directives An advance directive (advance refusal or living will) is a form of planning for healthcare in advance of incapacity, by which people with dementia can exercise

their right to self-determination. Thus for people with dementia, advance directives could be used to include other general wishes (to attend a day care centre, to take part in research, living arrangements etc). For an advance directive to be valid, the person must have capacity. Advance directives are an important means of ensuring that a person can consent to or refuse medical treatment or care, when they no longer have the capacity to do so. Advance directives for medical care have been widely advocated as a means of extending the autonomy of patients to situations when they are incompetent (Fazel et al., 1999). In Romania we have no instrument for the assessment of competency to complete advance directives that seems to be reliable, valid, and ready to be used in clinical practice.

3 Legal assistance and representation 3.1 Legal guardianship If a person lacks legal capacity the State (the Court, after medical expertise) may deem him as noncompetent or partial non-competent and decides to lay him under an interdiction. In Romania there are partial guardianship and total guardianship for partial non-competent and total non-competent patients. Art. 142 of Romanian Familial Code gives the definition and rules for applying the legal total guardianship (“Tutela”). The patient is examined by a legal medical commission who diagnoses a mental illness or disability and who evaluates the legal competence. This commission decides if the patient is non-competent, or partial non-competent, if he/she lacks legal capacity to perform certain daily living acts. Then the Court lays the non-competent person under a total or partial interdiction, when legal capacity can only be restricted. The City Hall as local administrative authority decides the legal guardianship and the person who will be the guardian of noncompetent patient to protect his/her interests. The definition and rules for applying the partial guardianship is written in Art. 146 of Romanian Familial

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Code. The partial guardianship (“Curatela”) can be established pre-guardianship, by the setting up of the guardianship, intraguardianship and interguardianship or postguarduanship when the guardian is changed (he is ill, he is dead or he is unwilling).

al definitions and assessment techniques for competency in elderly adults. Ethical problem for all forms of dementia is the decision about the right time to transfer the patient to a nursing centre and to reduce the therapeutic program using expensive drugs.

3.2 Enduring power of attorney

References

The power of attorney covers the case of temporary or partial incapability being an alternative to legal guardianship, avoiding the Court proceeding. The patient should understand that the attorney will be able to assume complete authority over the donor’s affairs and should understand the effect of this act. In Romania ensuring the power of attorney does not require the assessment of legal competence.

Baker RR (1998) A practice guideline for assessment of competency and capacity of the older adult. Professional Psychology: Research and Practice in the Public Domain 29(2): 149–54 Fazel S, Hope T, Jacoby R (1999) Assessment of competence to complete advance directives: validation of a patient centred approach. BMJ 318: 493–97 Kaplan HI, Sadock BJ (1991) Geriatric psychiatry. In: Synopsis of psychiatry behavioral science. Clinical psychiatry, 6th edn., pp 820–35 Kaplan HI, Sadock BJ (1993): Comprehensive textbook of psychiatry, 8th edn., pp 3797–3806 Mental Health Law: Monitorul oficial al Romaniei, XIV, No. 589, 8 August 2002 Oppenheimer C (1997) Ethics and the psychiatry of old age, In: (Jacoby R and Oppenheimer C, eds.) Psychiatry of the elderly, 2nd edn., chap. 38, pp 709–35. Oxford University Press, Oxford Post SG (1995) The moral challenge of Alzheimer’s disease. John Hopkins University Press, Baltimore Webber LS, Reeve RA, Kershaw MM, Charlton JL (2002) Assessing financial competence. Psychiatry Psychol Law 9(2): 248–56

4 Conclusions The practitioner involved in competency and capacity assessment of the older adult faces two major problems: lack of agreement on conceptual models to organize the assessment and changing legal context in which the competency assessment occurs. Ethical dilemmas never allow us simply to suspend judgement and do noting’ (Catherine Oppenheimer, 1995). There is an absence of consensus on conceptu-

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Chapter 24

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SPAIN Fernando Marquez and Raimundo Mateos

1 Introduction In Spain the issues dealing with competence and incompetence proceedings are essentially regulated by the Código Civil (Spanish Civil Code) and the Ley de Enjuiciamiento Civil (Spanish Rules of Civil Law Procedure), as well as by the Código Penal (Spanish Penal Code), regarding matters pertaining to the special protection of the incompetent as a victim. As to Informed Consent, whether in the case of diagnostic tests and interventions or their involvement in research or teaching projects, the basic regulation (pertaining to patients) is the Ley de Autonomía del paciente y del derecho al acceso a la información y documentación clínica (2000) (Spanish Law on the Autonomy of Patients and their Right to Access to Information and Clinical Documentation), which includes the contents of the Convention on Human Rights and Biomedicine (Oviedo, 1997), which became mandatory in Spain by parliamentary agreement in 2000. We should not forget, however, that in geriatric psychiatry it is not uncommon to find situations in which legal regulations are lacking, however, a decision still has to be made; in this situation the clinician has to draw in bioethics (Calcedo-Barba et al., 2002). The considerations and references made in each of the paragraphs below are applicable to persons who have been diagnosed with dementia. Its extension, limits, persistence and degree of impairment must be adapted to their level of cognitive impairment arising of the typology of the dementia and its stage, as analyzed in different publications of legal psychiatry used in this field (Arechederra-Aranzadi, 2004; Cabrera and Fuertes, 1997; Carrasco-Gómez

and Maza-Martín, 2005; Cortés-Domínguez and Moreno, 2001; Fernández-González, 2001; Santander, 2000; Simón-Lorda, 2000). Spain is one of the most aged countries in the world: currently the persons older than 65 and 75 account for 17% and 8% of population respectively and projections for 2050 increase such percentages to 31% and 17%, respectively. It is for this reason that all matters on legal, social, ethical and health issues connected with aging constitute a subject worthy of study and analysis in all domains of society. Awareness about dementia in professional and media circles has spectacularly increased over the last decade and a case in point is the publications on the subject both in scientific journals and for the public at large. The assessment of competence and other important legal issues for patients suffering from dementia and their relatives has been specifically tackled in two recent consensus documents, one of them developed by the Spanish Society of Psychiatry and the Spanish Society of Psychogeriatrics (Castellano and Villanueva, 2005) and the other by the Spanish Society of Neurology (Boada and Robles, 2005). Perhaps initiatives like these may in the future bring about a professional consensus on protocol procedures for the assessment of competence in dementia.

2 Incompetence versus competence The first issue that must be settled is the criterion of legal capacity in reference to a person (human being) so that they may be deemed in full exercise of their duties and rights. This capacity is linked to their legal personality. Every human being is, in principle,

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endowed with it. Under certain conditions, however, its exercise may be subject to limitations to a greater or lesser extent. This legal capacity, as defined in the Código Civil Español, arises at the moment of birth and expires with death. Legal capacity is relevantly expressed as the capability to “act”, “do”, exercise and perform rights and duties; govern oneself in accordance with the principle of personal autonomy; and ability to administer and manage one’s own properties. Such full exercise of one’s rights and duties corresponds to persons of legal age and it is limited, albeit strongly protected, for minors. The exercise of legal capacity (which in the medico-legal system is called competence) may be affected or be partially or fully lost either temporally or permanently so that the legally incompetent be placed under guardianship or curatorship, delegating on a third person by a decision of the court in a judgement on completion of the legal incompetence proceeding pursuant to sections 756ff of the Ley 1/2000 (de 7 de enero) de Enjuiciamiento Civil (Law 1/2000 of January 7 of Civil Code Procedure). Grounds for incompetence include “illnesses or permanent disabilities whether physical or psychic that prevent the person from managing their own affairs”. Anyone may commence an incompetence proceeding by informing the public prosecutor’s office or alternatively the very public prosecutor by their own initiative, the alleged incompetent or first or second degree relatives; furthermore, the authorities and public officers who, by reason of their office, should know of any ground for incompetence must inform the public prosecutor’s office. The court decision (judgement) shall determine both the extent and the limits of the incompetence or of the acts of self-management of property in the event of a declaration of prodigality as well as the appointment of a guardian or curator who is responsible for the care and management of the incompetent. In both cases, when the person is pronounced incompetent or prodigal, a new procedure may be commenced that restores competence when conditions apply. The Court, upon learning of the existence of grounds for incompetence, may of its own motion

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take the measures it deems suitable for the adequate protection of the alleged incompetent, or their estate and will inform the public prosecutor’s office. Medical Opinion: The medical opinion on the existence of grounds for incompetence as regards the person subject to the incompetence proceeding is construed as an indispensable requirement and shall follow the submission of forensic psychiatric evidence which shall include the existence of grounds for incompetence, if any, their extension and degree, whether it is reversible or not and how it affects the person’s ability to manage their own affairs and estate. The incompetent as a victim is contemplated in the Código Penal, which envisages protection and defense measures for persons suffering for special destitution before the aggressions and abuse of others, usually with the aggravation of the penalties when the victim is an incompetent.

3 Protection of property Prodigality: in the event that a person indulges in irrational expenses of an amount such that they endanger that person’s estate and that of those who by association or relation to that person are entitled to claim them. The grounds shall be a mental disorder that seriously affects the person’s ability to manage their estate (manic, delirious and serious impulse dyscontrol symptoms would be typical examples of clinical events that may manifest in the course of dementia). The protection measure in this case would be the curatorship, which entails a partial restriction of the capacity to exercise civil rights whose effects are mainly restricted to assets with a view to ensure its validity and efficiency in time while assets are protected. The same persons and institutions that may commence an incompetence proceeding may also proceed in the declaration of prodigality. The applicable legal norm is Ley 41/2003 (de 18 de noviembre) sobre Protección Patrimonial de las personas con discapacidad (Law 41/2003 of November the


Practice of competence assessment in dementia: Spain

18th on Asset Protection of handicapped persons), including those suffering from serious cognitive impairments compatible with dementia. This law envisages the following: –

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The creation of a protected state that will be exclusively used for the care, protection and well being of the disabled person whether it is managed by the same person or by tutors, curators or guardians or by non-profit, specialized specialized institutions, all of which shall be subject to the supervision criteria of the administrators of the said estate and in any case subject to institutional suspension by the Public Prosecutors’ Office. Self-guardianship: the possibility, contemplated by law, in virtue of which a person with capacity to act may take the steps they deem suitable as a precaution against their own future incompetence. This may be especially important in cases of brain degenerative diseases.

4 Capacity to enter a contract and make a will before a notary It is presumed and accepted as full, unless there is proof to the contrary. Whether in this case or in a private contract it is necessary to prove that as a consequence of a psychiatric disorder the person was not competent (knowledgeable of the act, of its consequences and their freedom) to enter such document, will or contract at the moment of executing it. This is much more easily proven in the event of a persistent and progressive disorder as opposed to a transitory, temporal one (as it is the case of the first stages of dementia). Whatever the case, a previous declaration of incompetence is not required to render the contract void if psychic incompetence for entering such contract at the moment of formalizing is proven.

5 Informed consent (for diagnosis/treatment/ research/teaching) Informed consent must be an interactive process that entails a level information that is sufficient enough in quantity (adapted to the cultural, education and intelligence level and the languages of common use) and comprehensible enough so that the person who must give consent can assess what is being proposed to them (diagnostic test or therapeutic intervention) and the consequences (those which will occur, those which might occur and those foreseeable because of the person’s specific health condition and characteristics as well as the consequences it might have on relevant areas of that person’s life and their quality of life). When the test poses a life risk or one with serious consequences, consent shall be given in writing and be signed by the consenting person. It shall always be reversible. At the very least, it shall be verbal and must be included in the person’s history. A sufficient interval of time is advisable between the informing and the consenting so that the person may meditate on it, consult other persons, who may or may not be relatives, request clarification or further information to the doctor providing the information. Consent is given for a specific test or intervention and must be given for each of them. In research procedures, rigor must be absolute; especially if the consenting person shall not derive any direct benefit of the results thereof and under no circumstance shall the procedure represent a serious risk for the participating patient. Voluntary admission to a hospital by reason of psychic disorder is envisaged in section 763 of the Ley de Enjuiciamiento Civil. Involuntary admission to a psychiatric ward whether in a general hospital (where most cases occur) or in a psychiatric hospital requires a court authorization which shall be obtained prior to such admission, except in cases of emergency which force to take such measure immediately. In such cases, the person responsible for admission to hospital shall report the admission to the relevant court within 24 hours and the court shall

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have 72 hours to confirm or not the admission. Before granting authorization or confirming admission to hospital, the relevant court shall hear the affected person, the public prosecutor’s office and any other person the courts deems relevant. The court shall furthermore directly examine the person subject to the procedure and hear the expert opinion of a doctor appointed by the same court. The admission to hospital order issued by the court shall also include the obligation by the doctors treating the person of informing the court at least every six months on the need to maintain the measure except when the court should order more frequent or complementary reports. Notwithstanding this, when doctors treating the involuntary patient deem suitable to discharge the patient, they may do so by immediately informing the court. Doctors may not discharge the patient without a prior authorization by the court when this measure has been taken as an alternative to imprisonment in pursuance of the Código Penal. A voluntary admission to a psychiatric ward, without intervention of a court, may become an involuntary admission if doctors deem it necessary and commence the relevant proceedings to obtain court authorization. Outside the scope of mental illnesses, there is the possibility of involuntary internment for any patient when there is a public health risk. In such a case, a court shall be informed of the internment within 24 hours (Ley Orgánica 3/1986 de Medidas de Defensa de la Salud Pública; included in Ley 41/2002 de 14 de noviembre, which regulates Patient’s Autonomy and the rights and duties as regards clinical information and documentation.)

6 Advance directives Formerly known in Spain as living will and more recently as “voluntades anticipadas”, advance directives are concerned with the extension of the principle of autonomy to the moment in which the affected persons may not decide for themselves. A representative

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may also be appointed as interlocutor with the doctors when the patients cannot decide for themselves. Advance directives are only valid for the procedure and exact case they describe, provided they do not infringe the legal framework in force. They are reversible, must be entered in an official record office and must be periodically confirmed (periods will be determined in a Regulation currently been drafted). There shall be at least one such record office with a national scope ( for the whole of Spain) although it will be kept in collaboration with those autonomous communities that decide to put in place their own. Whether in the case of informed consent or advance directives in patients with mental disorders care and precaution in the procedures shall be uppermost.

7 Mentally disordered offenders In cases of mentally disturbed persons who have committed crimes it shall be at the discretion of the court to impose measures restraining liberty (admission to a suitable health and/or education institution) or other types of restrictions (injunctions, revocation of the license to carry firearms or of the driving license and professional disqualifications) which may include undergoing outpatient treatment at medical or social/health centers for up to 5 years.

8 Driving motorized vehicles and possession of firearms Generally speaking, the professionals’ duty to report is confined to crimes and situations that have the appearance of criminality as defined in the Ley de Enjuiciamiento Criminal (Spanish Code of Criminal Procedure). Otherwise, consensus documents advise professionals to act prudently before this situation and recommend the patient (and their relatives) not to drive on the basis of the risks posed by the disorder or the side effects of medication.

Practice of competence assessment in dementia: Spain

Certified and authorized offices conducting the mandatory competence and aptitude tests required for obtaining a driving license operate in accordance with the following criteria. Generally speaking, the renewal of a driving license and the corresponding evaluation occurs from the moment of legal age a) up to the age of 45, every ten years; b) between the ages of 45 and 70, every 5 years; c) older than 70, every 2 years. There are restrictions to these periods in the case of some illnesses. Thus, for those suffering from monocular vision impairment, diabetes or cardiopathy renewal periods are 5, 4 and one year respectively. In the case of serious mental disorders which require psychopharmacologic treatment: (a) When it pertains professional licenses, heavyduty vehicles or public transport vehicles, the general rule is to deny them. (b) As to private cars, the person making the assessment in each case shall determine which renewal period should be applicable (it could be one year or even 6 months) as well as the speed limit applicable to that person.

References Arechederra-Aranzadi JJ (2004) Psiquiatría y ley. Tres Cantos, You & Us, SD Boada M, Robles A (2005) Análisis y reflexiones sobre la capacidad para tomar decisiones durante la evolución de una demencia: “Documento Sitges”. Editorial Glosa, Barcelona Cabrera J, Fuertes JC (1997) Psiquiatría y derecho. Cauce Editorial SL, Madrid Calcedo-Barba A, Gil-Gregorio P, Castelli-Candia P (2002) Legal aspects in dementia. Curr Opin Psychiatry 15(6): 577–81 Carrasco-Gómez JJ, Maza-Martín JM (2005) Manual de psiquiatría legal y forense, 3rd edn. La Ley-Actualidad SA, Las Rozas Castellano M, Villanueva E (2005) Aspectos legales y éticos. In: Sociedad Española de Psiquiatría, Sociedad Española de Psicogeriatría (eds), 2nd edn., SANED, Barcelona, pp 91–117 Cortés-Domínguez V, Moreno V (2001) La nueva ley de enjuiciamiento civil. Editorial Tecnos, Madrid Fernández-González B (2001) La incapacitación de los ancianos en la nueva Ley de Enjuiciamiento Civil. Actualidad Civil 4: 1647–58 Santander F (2000) Ética y praxis psiquiátrica. Asociación Española de Neuropsiquiatría, Madrid Simón-Lorda P (2000) El consentimiento informado, historia, teoría y práctic. Editorial Triacastela, San Sebastián

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Chapter 25

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWEDEN Karin Sparring Björkstén

The Swedish word “rättshandlingsförmåga” or legal competence refers to an individual person’s lawful right to make agreements and decisions about his or her property and life. All adults in Sweden are considered to have legal competence unless proven otherwise. During the past decades, the Swedish society has moved towards more respect for individuals, albeit demented, mentally ill or retarded. Respect for everyone’s autonomy is emphasized in social and medical law. The law states clearly that as little coercion as possible should be used. Until 1989, legal guardians were appointed to adults with mental disorders or mental retardation. Those adults lost the right to decide about their own financial and legal affairs, as well as the right to vote and to get married without special permission. After abandoning legal guardians, there are three possibilities for those who need assistance in managing their economy and private lives.

1 Power of attorney Anyone with legal competence is allowed to sign a power of attorney for someone else to take care of his or her business. This is common among family members and close friends. The power of attorney is not valid if the patient does not understand the nature of it. This excludes many patients with dementia from this possibility. There is also confusion about the validity of the power of attorney: Even if the patient understood what (s)he was doing when signing it, is it still valid when dementia has progressed? Some banks refuse to accept a power of attorney after calling patients who neither remembers nor under-

stands. On the other hand, it does happen that demented persons are deceived with the help of old or new powers of attorney.

2 God man (“Good man” or “Mentor”) If the patient’s business cannot be managed within the family, the court can appoint a “god man” (“good man” or “mentor”) (Children and Parents Code, 1949a). About 60,000 people, many of whom are demented, have a “good man”. Applying for a “good man” is a routine procedure in elderly care. A social investigation, usually made by a social worker is needed. If the patient understands the idea of getting a “good man”, (s)he must sign that (s)he accepts this. If the patient does not understand, a doctor’s certificate is needed. There is a simple form to be filled out but no formal requirements how the patient should be assessed. Any physician licensed to practise medicine in Sweden can write this certificate. Patients, doctors and relatives usually do not need to appear in court. Any adult, man or woman, can be a “good man” and relatives often volunteer. The “good man” should make sure that the economy is in good order and that the patient gets the social support needed. The “good man” has the legal right to apply for social benefits, and to deal with authorities on behalf of the patient, but is not allowed to do anything against the patients expressed wish. The patient retains all legal rights, whereas the “good man” has several restrictions. A “good man” may not provide adequate protection if the patient is active and lacks judgement. On the other hand, it does happen that “good men” deceive patients, since there is

Chapter 25: K. Sparring Björkstén

little control of what they actually are doing. Tragic cases have been reported in the media.

3 Förvaltare (“Administrator”) If a “good man” cannot provide the patient enough protection, the court can appoint a “förvaltare”, an administrator (Children and Parents Code, 1949b). This is as close as we come to a legal guardianship. The patient loses a number of rights, such as signing binding legal arrangements or economic agreements, but keeps the right to vote and to get married – and to run for office. About 6000 people have administrators. Since a patient who has a “good man” still has legal competence, (s)he can give away money or sell the house for a fraction of its value or be used by greedy persons. An elderly person who cannot resist an offspring begging for money may have to be protected by an administrator. An administrator can be appointed by the court if it is not otherwise possible to limit the patient from his/her activities, or others’ abuse of the patient’s lack of judgement. It is hard to obtain court approval of an administrator. Other solutions have to be excluded or previously tried and carefully documented. A doctors’ certificate is always required, and must be highly motivated and carefully written. Any doctor licensed to practise in Sweden can write this certificate, although it is not considered proper to leave this task to junior doctors. There is usually a long delay before a patient gets an administrator. Unfortunately, many persons make considerable losses because of this delay.

nology. Medical universities teach very little law, and law schools teach very little medicine. Many doctors do not know what to do with questions regarding their patients’ legal competence. Most medical departments dealing with dementia would do a regular dementia work-up. If available, a neuropsychological test by a psychologist would be done. However, neuropsychologists are scarce. Consequently, a demented patient cared for in a family practise may sometimes never be tested by a neuropsychologist.

5 Will The law states that “A will that has been written under the influence of a mental disorder is not valid” (Inheritence Code, 1958a) and that “If someone has forced testator to write his will or abused his lack of judgement, weakness or dependence, the will is not valid” (Inheritence Code, 1958b). Wills are usually written without any medical assessment. If inheritors want to question a will, they must take the issue to court. Anything can be used as evidence in the trial. Medical staff that has cared for the patient can be called as witnesses. Other experts can be asked by the parties to review patient records and other evidence. This is often difficult, since patients seldom have been assessed with regard to legal competence. In a civil action, like questioning of a will, the parties and not the court have to find expert witnesses. There are few doctors who accept to be expert witnesses.

6 Agreements made under the influence of mental disorder 4 Legal competence from a medical point of view There are no generally accepted ways to determine who has or has not legal competence. Doctors usually regard it as a legal problem, whereas lawyers consider it to be a medical issue. Doctors and lawyers seldom meet, and generally do not speak in the same termi-

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It is not unusual that patients with dementia or other mental disorders do business that they would not have done if they had been healthy. There are laws that protect the patients. Unfortunately, those laws are not well known within the medical community. “An agreement made under the influence of mental disorder is not valid” (Law concerning agree-

Practice of competence assessment in dementia: Sweden

ments under influence of a mental disturbance 1924). If a patient has bought or sold something under the influence of a mental disorder, any doctor can write a simple certificate and refer to the above law. The family should be instructed to bring the certificate to the shop and explain the problem. In case of major issues, like selling a house, the family should be instructed to get in touch with a lawyer.

7 Impediments to marriage Impediments to marriage according to Swedish law are (1) age less than 18 years of age, (2) being closely related or (3) already being married. Having a “good man” or “administrator” is not an impediment to marriage. Actually, there are no explicit requirements in the law about the parties actually understanding the significance of marriage. The Supreme Court has therefore tried a case where a demented person was married to a non-demented person (Supreme Court 1994: 23). It was found that the intention of the law is that the parties must understand what they are doing. It is the person who officiates at the marriage that is responsible to check this.

8 Elections It is not possible to deny Swedish adults the right to vote. Anyone who has the right to vote also has the right to run for office.

9 Conclusions In summary, all Swedish adults are considered competent unless proven otherwise, and the law is of little help when assessing legal competence. There are laws that provide some protection to persons with dementia and other mental disorders. There is a great need for guidelines and knowledge in the medical care system to assess legal competence. Law is not well known to health care professionals and medicine is not well known to the legal professionals. Legal professionals dealing with demented subjects need to learn more about medical aspects. The life span and situation for people with dementia is totally different today than a few decades ago. Revision of the Swedish law concerning the rights and the protection of people with dementia is needed.

References Swedish laws are found on the website of the Swedish Parliament; http://www.riksdagen.se/ Children and Parents Code a (Föräldrabalken 1949: 381 11 kap 4 §) Children and Parents Code b (Föräldrabalken 1949: 381 11 kap 7§) Inheritence Code a (Ärvdabalken 1958: 637 13 Kap 2 §) Inheritence Code b (Ärvdabalken 1958: 637 13 Kap 3 §) Law concerning agreements under influence of a mental disturbance (Lag om verkan av avtal, som slutits under påverkan av en psykisk störning 1924: 323) Supreme Court (Precedent) (Högsta Domstolen 1994: 23)

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Chapter 26

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWITZERLAND Marc Graf and Eva Krebs-Roubicek

According to estimates of the Swiss Alzheimer Association, about 96,000 persons suffer from different forms of dementia in Switzerland. We expect 21,000 new cases per year, every year about 18,000 persons suffering from dementia die. One third of patients are correctly diagnosed, one third suffers presumably from a cognitive disorder, but for one third of the patients the cognitive disorder has not been recognised. More than half of the persons suffering from dementia live at home and about 40% in an institution. We estimate, that 300,000 relatives are directly involved. Only 25% of persons suffering from dementia receive specific drug treatment, and only 20% receive specific non-drug treatment. In Switzerland the diagnosis of dementia is often carried out in memory clinics, in multi-disciplinary working collaboration of neuropsychology, psychiatry of the elderly, geriatric medicine, neurology, neuroradiology, social workers and nursing staff. In order to improve the diagnosis and the treatment of dementia the following principles of assessment have to be established: – – – – – –

Recognising cognitive deficits, describe premorbid functional ability and behaviour. Record past and present general medical status and medication. Objective assessment, especially useful in cases of mild to moderate dementia. Establish specific patterns of cognitive deficits. Differential diagnosis of depression and dementia. Formal assessment of the impact on caregivers living with and looking after a person with dementia.

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Recording response to different interventions (pharmacotherapy, sociotherapy, psychotherapy).

To assess strengths and weaknesses of evaluation relative to a standardised scoring system a detailed research program has to be established in order to introduce screening and rating scales, specific tests, behavioural checklists, interview-based questionnaires and detailed measures of cognition, ADL and general functions. The law relating to the elderly demented individual and to those responsible for their care varies widely from country to country. In Switzerland federal civil law is applied quite different in the 24 cantons in specific cantonal laws and regulations. As in most modern countries, self-determination of any person from birth to death is guaranteed by the constitution. As a consequence, any medical act, such as an operation but also the administration of drugs is, as a matter of principle, unlawful, if not permitted by (a) the consent of the patient, (b) the consent of his (legal) representative in patients habitually incompetent and (c) good medical practice and commensurability in momentarily incompetent patients (emergency cases). This would literally imply that, in any demented persons, who are not competent to consent, a legal representative ( for this affair) should be imposed (“Vertretungsbeistandschaft”, Art. 392 Paragraph 1 Swiss civil code). For persons, who are, due to mental disorder or dementia, not capable to manage their affairs,

Chapter 26: M. Graf and E. Krebs-Roubicek

who are in need of continuous protection and care or peril the safety of others, legal guardianship has to be established. Unfortunately Swiss authorities are very conservative ordering such measures if not requested by the respective person. (Side note: How should an incompetent person dependably ask for legal guardianship?; mostly the significant others have to ask for help!) This reluctant attitude is partly a backlash from widespread abusive practices up to the seventies, as, for example, to impose systematically guardianship for children from ethnic minorities, sterilizing mentally disabled women surgically and setting mentally disabled men under anti-androgenic medication. As a result, Swiss physicians, especially when dealing with mentally ill and/or demented patients, hover between legal preconditions and daily practice. The daily practice formed the following main principles of common law in dealing with demented patients: –

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A diagnosis of dementia should not automatically mean that the patient’s views are no longer to be considered. However, only competent persons are able to make voluntary and informed choices that are ethically and legally valid. Individuals capable of making their own decisions should always be allowed to do so, in keeping with the ethical principles of respect for autonomy and justice. For those not capable of making their own valid choices, the family and professionals’ responsibility is one of protection. Assessing competence is never easy and patients may be competent to make their own decisions. In general, patient’s views should be paramount, unless others will be adversely affected or there is concerns about safety (e.g., driving). Aspects to be considered when making a decision about competence should include the ability to: • Communicate and maintain a stable choice • Understand (and remember) relevant information in order to make an informed choice • Grasp the significance of the situation

• –

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Manipulate information rationally to gain logical and consistent conclusion An independent patient’s advocate may help decision making. Alternatively reference can be made to a committee set up to consider legal issues. Neither should merely be used as a way of passing on to others the responsibility for difficult decisions. Decision-making ability may change over time, for example as dementia progresses or delirium resolves. Re-evaluation of capacity may be required at regular intervals, to determine whether competence has been lost or regained.

If the patient is considered incompetent, then someone else must make the decisions for him. According to the above mentioned practice, this may be their next relative, their professional adviser, someone legally appointed by the patient, while he was still mentally capable or some legal advisor. The following points should be considered during the process of decisions making: –

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The primary care physician is ultimately responsible for any medical decisions in the best interest of the patient and will be accepted by a responsible body of medical opinion Judging capacity for consent will, at least, be greatly influenced by medical opinion leading to diagnosis. The physician involved should gather information from all available sources as well as carefully assessing the patient, who should be helped to understand and contribute to the decision making Close family and friends should be consulted before a final decision has been made. They may be able to provide information about what the demented patient would have wanted, if he or she were able to express their opinion openly A second opinion is always wanted if there is an uncertainty

An expert commission has conceptualized during the last 15 years a draft for a new law concerning guardi-

Practice of competence assessment in dementia: Switzerland

anship which the federal council will decide to accept in the next two years. Consultation of stakeholders like political parties but also organisations of patients and relatives as well as the association of Swiss physicians proved general agreement. The most important changes concerning the topic of demented persons will be:

have the opportunity to take part in research. However, they also retain the right to refuse to cooperate.

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In case of complete or partial incompetence, the following persons, in this order, have to act (they are obliged to) in place of the respective patient, regarding outpatient as well as patients during hospital treatment (new Art. 378 Swiss civil law): (1) the person denominated in an advance directive; (2) the legal assistant deputizing the patient (in case of official assistance); (3) the spouse or, in homosexual couples, the legal partner, if they share the household with the incompetent person and care for her; (4) the person, sharing the household with the incompetent person and caring for her; (5) the offsprings, (6) parents and (7) the siblings, if they also care for the incompetent person on a regular basis. This will give partners and relatives much more competence but also responsibility. Physicians no longer are allowed to decide on their own for the incompetent person according to her or his apparent will. Legal measures to assist partially incompetent persons will be much more flexible, graduated and specific for the respective person Patients advance directives will become obligatory to follow (new Art. 370 ff.). The cantons are allowed to impose additional legal regulations for outpatient measures (new Art. 437).

If treatment of dementia is to improve, then research is essential. Every individual with dementia should

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Issues of consent and confidentiality must be respected and addressed. When informed consent from the person with dementia is not possible, consent from their legal representative is appropriate. Non-therapeutic research (without possible benefit to the individual involved) is especially difficult to justify in those unable to give their own fully informed consent.

As dementia progresses, this can severely influence the activities of daily life and the performance of the patient. One of the most common examples is the driving ability which is inevitably compromised as dementia develops: –

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There is a general consensus that persons with moderate to severe dementia (CDR stage 2.0 to 3.00) are not safe to drive. The relative risk of crashes for drivers with VaD of CDR stage 1.00 is greater than society tolerates for any other group of drivers.

Furthermore, the following factors influence driving safety: – –

– – – –

Loss of cognitive abilities; particularly deficits of attention and of complex reasoning. Loss of visuo-spatial skills, difficulties in dealing with visual stimuli under conditions of divided attention and switching skills. Personality changes (especially in the frontal lobe dementia). Lack of insight and impaired judgement. Loss of ability to compensate in different situations reduces the ability to drive. Even early in the course of illness there is evidence that patients are more at risk of road traffic accidents and they may become occasionally or regularly lost. Forgetting where the car is parked is frustrating, but not a safety issue.

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Therefore lately introduced regulations oblige persons aged 70 and above to check their ability to drive on a yearly basis at physicians mandated by the authorities. Before, those checks were largely optional and performed by family doctors.

Conclusions Competence can express to have the ability to understand, appreciate, reason and decide on specific, important issues of daily life. During the management of demented patients the competence must be considered. Good management of demented patients requires considerable community based resources, backed up by easily accessible hospital and residential facilities. The concept of personhood and person-

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centred care has become central to provision of high quality dementia care. Good management will also require the patient and caregiver to be regarded as a partnership. Considering carer’s concerns will often result in a better long term outcome for the patient. Active treatment of troublesome symptoms and organisation of good quality care will favourably influence the outcome of all patients.

References Bayer A, Reban J (2004) Alzheimer’s disease and related conditions. Medea Press – M. Bransovsky, Rudolfov, CZ Swiss Consensus for Diagnosis and Care of Demented Persons in Switzerland 2007 (in press) Schweizerische Alzheimervereinigung (2004)

Chapter 27

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: CZECH REPUBLIC Iva Holmerová, Martina Rokosová, Božena Jurašková, Hana Vanˇková, Hana Cˇvancˇ arová, Pavla Karmelitová, and Eva Provazníková

In Czechia, Alzheimer’s disease and other diseases causing dementia have been a topic of discussion only since last 10 years. Before, the syndrome of dementia was considered to be a consequence of atherosclerosis, or better to say, the component of atherosclerosis. In other instances, dementia was considered to be a part of normal ageing, not a disease. This situation has changed substantially which may be also due to the activity of the Czech Alzheimer Society which started its activity in 1997. The primary medical care for patients with dementia is provided by general practitioners. Each general practitioner provides care to those persons who are registered in his/her office. The care for those persons is reimbursed form the general health care insurance on the basis of capitation (per capita payment). In a situation when it is necessary to limit the legal competency of a patient with dementia, for instance because of a behavior that would threaten himself/herself, or which would damage the environment, physician should pass this information to a court and suggest limitation of a legal competence. It is the court which ought to take a decision about legal competence. However, the time of the procedure is usually very long and, therefore, this institution is not used in all cases for which it is adequate. Between the time of the reporting to the court and the time of the decision there is usually a very long period of time when substantial changes of health status and of social circumstances can occur. The court may issue a preliminary decision to try to settle all difficult cases; however, this is not very common in the practice. On the other hand, families are very cautious in these sit-

uations because they often consider the competence limitation to be harmful for the patient and his/her dignity especially because it is considered to be a negative label (Holmerová, 2004; Holmerová et al., 2003).

1 The consent with treatment and stay in an institution According to the legislation of Czech Republic, Act no 86/1992, a person may be admitted to a health care institution without having given his/her own assent only in the following situations: –

–

–

In cases of diseases listed in a special regulation, where it is possible to impose a treatment on unwilling patients; If a person afflicted with mental disorder or an intoxicated individual represent danger for him/ her and/or for other persons and the environment; In cases of seriously health-impaired patients in an acute or life-threatening situation when it is not possible to obtain the consent because of severity of health-impairment.

In all of the above-mentioned situations the health care institution concerned must report not later than 24 hours to the court which is then obliged to consider the case and decide within 7 days (Zákon 86/1992 Sb). According to our experience, one may assume that this regulation is not applied especially to persons with dementia who are not able to express ex-

Chapter 27: I. Holmerová et al.

plicitly whether they agree with the stay in the health care institution. Often the sign of consent is misunderstood. Only few health care institutions have undertaken measures and adopted guidelines how to inform persons with dementia and limited cognitive capacity and how to get consent from them or/and how to communicate with persons with dementia to learn about their preferences. The above-mentioned regulation also does not apply to some (in practice) frequent situations when it is necessary to treat comorbidities of dementia or behavioral and psychiatric symptomatology of persons with dementia, conditions that worsen significantly the quality of their life but are not dangerous to their life or to the life of others. This regulation applies to health care institutions, not to social care institutions. We assume, therefore, that persons must not stay in social care institutions without their consent and, moreover, social care institutions must not use any restraints. Unfortunately, this does not happen in practice and the use of restraint is a widely-criticized topic discussed in relation with social care in institutions (Holmerová et al., 2003). All the rules refer to persons without legally limited competency. In such cases it is the guardian who decides on their behalf and in some cases he must inform the court as well.

little information concerning this important standard and, simply stated, people do not know it.

3 Documentation on informed consent Since November 1, 2006 there is a regulation no. 385/2006 on health care documentation (Vyhláška 385/2006 Sb). This regulation includes duty of a health care institution to provide informed consent with documentation related to health care provision. This regulation defines also conditions for the refusal of health care. That is, again, valid for persons who are not incapacitated legally. Especially the situation of persons with dementia is very problematic from this point of view as those persons are incapacitated from the nature of the disease but they are not legally incapacitated. Most of them, however, are not able to consider their situation in an adequate way and therefore they sign “the consent” without proper understanding. This situation is a subject of concern by the Czech Alzheimer Society and it is necessary to implement guidelines on Advance Directives (Alzheimer Europe) also in the Czech Republic (Advance directives, Alzheimer Europe).

4 The role of ombudsman 2 Convention In 1998 the Czech government adopted the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Haškovcová, 2002). This convention has become a part of Czech legislation after the adoption and ratification by the Czech Parliament. This Convention provides rules on how to give appropriate information so that the person gives free and informed consent. All health care procedures may be performed only on the condition the person concerned gives free and informed consent which may be freely withdrawn at any time. Some sources, however, state that the general public has only very

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The amended law on the Czech ombudsman (Public Defender of Rights) came into effect on January 1, 2006 (Zákon 349/1999 Sb.). As a result, the ombudsman’s responsibilities have been extended very radically to include the task of performing systematic visits to all places ( facilities), where persons restricted in their freedom are or may be located, regardless of whether the freedom of such persons has been restricted by a ruling or order released by a public authority (such as a court), or as a result of the actual situation and specific dependence on care provided. During his visits, the Czech ombudsman examines the treatment such people receive, endeavors to ensure that their fundamental rights are respected and boosts their protection against so-called mistreatment.

Practice of competence assessment in dementia: Czech Republic

Controls of the ombudsman office raise recommendations. The latest conclusions are based on the Czech legislation and also on professional opinion, including, e.g. guidelines of Czech Alzheimer Society on the use of restraint in institutions (Doporucˇení Alzheimer Europe týkající se omezovacích prostrˇedku˚).

5 Driving capacity The general practitioner who registers his/her patients for primary care is obliged to consider also driving capacity. In all situations that are not compatible with driving he/she is obliged to report to a vehicle inspectorate. Drivers older than 60 years are obliged to have a health check documented in regular intervals, this may be controlled by the police (Zákon 361/2000 Sb). Strategies to evaluate acts of self-care and of selfsufficiency in order to determine degree of dependence for the purpose of social care provision according to the law on social care 108/2006/Digest/. (Zákon 108/2006 Sb) (1) The ability of an individual to perform acts of self-care and self-sufficiency is evaluated according to activities which are defined for each act of self-care and self-sufficiency. (2) An individual is not regarded to be capable of performing acts of self-care and self-sufficiency under the following conditions. He or she is not able to recognize the need to act in order to provide self-care and self-sufficiency or is disabled physically to act accordingly or is unable to perform correctness check for the activity performed already for some time, neither independently nor reliably.

6 Legal competency Legal competency is a legal category which is closely related with fundamental rights and freedoms, which

are imbedded in The Charter of Fundamental Rights and Basic Freedoms (Resolution of the Presidium of the Czech National Council of 16 December 1992 on the declaration of the Charter of Fundamental Rights and Basic Freedoms as a part of the constitutional order of the Czech Republic as amended by later regulations) and at the same time with legal capacity. Constitutionally legal definition of legal capacity is necessary to discriminate from the private-law definition where according to §§ 7 – 10 of the Civil Code (Act no. 40/1964/Digest/as amended by later regulations) (Zákon.cˇ. 40/1964 Sb) legal competency to and legal capacity are differentiated. Legal capacity is granted to everyone since his/her birth (and even before, e.g. the so-called nasciturus, an unborn child, if subsequently born alive, is considered as already in existence) until death. Legal competency as a competency of an individual to acquire rights and undertake obligations by one’s own legal acts is in its entirety granted to anyone who reached 18 years of age and becomes extinct in case of death the latest. However an individual may be legal deprived of such competency in given cases. According to the article § 10 of the Civil Code (Jedlicˇka et al., 2003, Zákon.cˇ. 40/1964 Sb), in case an individual suffers from a permanent mental disorder and is incapable of legal act, the court will exempt him/her from that competency (section 1). In case an individual suffers from permanent mental disorder, perhaps on account of excessive drinking, or the use of narcotics but yet is capable of some legal acts, the court will limit his/her competency and will define these limitations (section 2). Exemption or limitations of competency may be modified or reversed in case the reasons for such measure no longer apply. It is a standard practice that the exemption of limitations of legal competency becomes a matter of civil court trial which may or may not be initiated by a proposal, § 81 section 1 of the Code of Civil Procedure Act no. 99/1963/Digest/as amended by later regulations (Bureš et al. 2003), i.e., by official authority, i.e. resolution issued by court dealing with initiation of trial of legal competency based on motion submitted by, e.g. state authority, health institution,

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or a third-party individual. In this case the subjects will not become a party to the case. It is possible that the court learns about circumstances based on its own research, according to which it may initiate the trial without a motion. In case the trial has been initiated based on a motion, which is granted to anyone who is competent to become a party to a case, i.e. anyone who is competent to undertake rights and obligations is legitimate to become a party to a case, or anyone whose competence is granted by the court – § 19 Code of Civil Procedure (Zákon.cˇ. 99/1963 Sb) the motion to exempt from, limit or restore legal competency can be submitted even by an individual whose competency is the one concerned. A health institution may be the submitter only in case it is competent to undertake rights and obligations and the same conditions apply to welfare institutions (granted by judicature). It is a matter of civil procedure regulated by §§ 186 – 191 Code of Civil Procedure (Zákon.cˇ. 99/1963 Sb). In case it is a matter of competency of the court, the court of material competence is the district court; the court of local competence is the court which the individual with the competency concerned belongs to. The trial is free of charge (Baštecký, 1997). The statement of claim must be provided with the usual essentials. If the content of the petition regarding legal competency of an individual is not explicit enough, it must be made clear whether the individual aims at acting as a submitter or someone who initiates inception of the trial (Bureš et al., 2003). If the statement of claim is not submitted by state authority or health institution, the court may oblige the submitter to hand in medical record concerning mental condition of the individual under review. State authorities and health institutions as well as the individual whose competency is the one concerned cannot be obliged to hand in medical record concerning mental condition of the individual under review. The obligation may or may not be introduced by the court. A motion to restore legal competency may be submitted even by an individual deprived of competency. After the opening of the trial the court appoints a guardian for the case to represent the individual

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with the competency concerned. In addition, the individual under review is interrogated by the court, but this examination may be avoided if it cannot be executed or it cannot be executed without actual harm of the individual under review. The court always interrogates an expert and based on his suggestions the court may rule that the individual under review must be examined in health institution for a period of three months at maximum in case it is absolutely necessary in order to enquire about the health condition. In addition to the individual under review, a party to the case is anyone who submits the statement of claim. During examination of the mental condition of the individual under review the court considers expertise and if he/she is incapable of independent existence, matter of fact findings collected by the court are based on the individual situation and living conditions of that person, i.e., the way he/she behaves in daily life, how he/she is able to satisfy the needs of the family, how he/she manages resources, the behavior of his wife/her husband and his/her adult children. For the sake of convenience, the court need not decree legal proceedings and may decide to refrain from delivery of decision on legal competency, if the delivery may have a negative impact on the mental condition of the addressee or if the addressee is incapable of comprehending the resolution. The court takes a decision by announcing a verdict stating information about the citizen concerned. If the court decided on limitations of legal competence, it may define the extent by further specification of the limitations (either what the individual is competent to do or what the individual is not competent to do). The status of such a citizen is then modified in such a way that he/she is no longer partly or utterly competent by entering into legal acts (possibly only by few) to acquire rights and undertake obligations. The decision, however, is valid only in terms of future without retroactive effect. The costs of the proceedings dealing with legal competence are paid by the state (ipso jure). If we consider substantiation and finding of facts related to the trials concerning legal competence it

Practice of competence assessment in dementia: Czech Republic

is by no means a time-consuming procedure. The reason is that interrogation of the individual under review and other witnesses is usually followed by provision by the expert for the problem of consideration one’s mental condition is one where there is a need for expert knowledge. The decision by the court is naturally dependent on the results of the expertise. The appointed expert usually prepares the expertise in written form and the expertise is delivered to the court, eventually, to be delivered to the parties by the court. After the submission of the expertise the expert is summoned to the proceedings decreed. The expert is then given a hearing. At this point the court is usually provided with enough evidence to decide in the case. If there are no further obstacles (e.g., utilization of court hearings, problems of delivery etc.), the case may take place and lawfully end within couple of month. If the court decided on lawful limitation or deprivation of legal competence, the trial is followed by another trial concerning custody where the person concerned is provided with a guardian, such provision is compulsory according to the law. The rights and obligations related to material law are affected by the limitation or deprivation of legal competence, e.g. such an individual is incapable to act on his/her own during legal or other proceedings. He/she must be represented by a guardian appointed by the court. The extent of guardian’s rights and obligations is defined by the court in the decision on appointment of a guardian. The approval of the individual suggested as a guardian to be appointed as a guardian and the fact that he/she is a party to the case is a condition for his/ her appointment as a guardian. To choose the right person as a guardian is necessary in order to protect the interests of the individual with no or limited legal competency. The search for a possible guardian takes place within the family circle and among people close to the person concerned in the first place. If no such person agrees to be a guardian or if there is no such person, it is possible to appoint another suitable person and in case there is no one fitting, a public guardian is appointed (Baštecký, 1997).

In the meantime, the court inspects the administration of assets performed by the guardian and introduces appropriate measure to find out about security of the assets and to secure the assets concerned. After the termination of representation the guardian submits to the court a final bill concerning the administration of the assets. However, the guardian may be obliged by the court to submit regular reports. As regarding the usual matters, the guardian represents the individual with no or limited competence to act in law on his/her own, if it is a matter of extraordinary circumstances his acts require approval of the tutelary court.

References Advance directives, Alzheimer Europe, Ustanovení vu˚le (translation I. Holmerová), available from www.alzheimer.cz Baštecký J (1997) Psychiatrie, právo a spolecˇnost. Galén, Praha, pp 99–102 Bureš J, Drápal L, Krcˇmárˇ Z, Mazanec M (2003) Obcˇanský soudní ˇr ád: Komentárˇ, 6. vydání Praha, C.H. Beck Haškovcová H (2002) Lékarˇská etika, Galen, Praha, pp 103 Holmerová I (2004) National background report on Czech Republic (NABARE); available from www.uke.uni-hamburg. de/extern/eurofamcare-de/, Hamburg Holmerová I, Jurašková B, Zikmundová K (2003) Vybrané kapitoly z gerontology. CˇALS, Praha Jedlicˇka O, Švestka J, Škárová M et al. (2003) Obcˇanský zákoník: Komentárˇ. 8. vydání, C.H. Beck, Praha Švestka O, Jedlicˇka J et al. (1996) Ochrana osobnosti. 3. prˇepracované a doplneˇné vydání, Linde Praha a.s., Praha Doporucˇení Alzheimer Europe týkající se omezovacích prostrˇedku ˚ (transl. I. Holmerová), available from www.alzheimer.cz Sdeˇlení Ministerstva zahranicˇních veˇcí 96/2001 Sb. O prˇijetí Úmluvy na ochranu lidských práv a du ˚stojnosti lidské bytosti v souvislosti s aplikací biologie a medicíny: Úmluva o lidských právech a biomedicíneˇ, available from www.mvcr.cz Vyhláška 385/2006 Sb. O zdravotnické dokumentaci, available from www.mvcr.cz Ústava Cˇeské republiky cˇ. 1/1993 Sb., available from www.mvcr.cz Zákon.cˇ. 40/1964 Sb. Obcˇanský zákoník ve zneˇní pozdeˇjších prˇedpisu˚, available from www.mvcr.cz

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Zákon 86/1992 Sb. O pécˇi o zdraví lidu (úplné zneˇní s pu ˚sobností pro Cˇeskou republiku, jak vyplývá z pozdeˇjších zmeˇn a doplneˇní), available from www.mvcr.cz Zákon 349/1999 Sb. O verˇejném ochránci práv ve zneˇní pozdeˇjších prˇedpisu˚, available from www.mvcr.cz

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Zákon 361/2000 Sb. o provozu na pozemních komunikacích ve zneˇní pozdeˇjších prˇedpisu˚, available from www.mvcr.cz Zákon 108/2006 Sb. O sociálních službách, available from www.mvcr.cz

Chapter 28

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: UK Sarmishtha Bhattacharyya and Alistair Burns

Healthcare professionals are often asked to assess an older person’s competence to make a decision about a range of circumstances including areas like testamentary capacity, financial decisions, advance directives, consent to treatment, driving, research participation as well as decisions about going to a hospital or a nursing home. The core symptom of dementia is the impairment of one’s intellect, which might lead to difficulties in making such decisions; however such a diagnosis per se does not make a person incompetent. Primarily it is important to inform a patient of his diagnosis of dementia. Whilst there is a growing consensus in favour of disclosing the diagnosis of dementia to the person concerned, diagnostic disclosure in dementia remains both inconsistent and limited (Bamford et al., 2004). In U.K. guidelines for good practice are available from various organizations, which include The General Medical Council (GMC), the British Medical Association (BMA), DVLA and others. In 1995, the BMA and the Law Society jointly produced guidelines on the assessment of mental capacity, which is currently used as guidance by doctors practising here. The Mental Capacity Act 2005 received Royal Assent in April 2005 and is due for implementation by 2007. It provides a statutory framework to empower and protect vulnerable people who are unable to make their own decisions. It works on basic principles which include a presumption of capacity in an individual, the right of individuals to be supported in making their own decisions, the duty to act in the best interest of the patient and to always choose the least restrictive option. A person is said to lack capacity if he/she is unable to make a decision for oneself in relation to the

matter to be decided. According to the 2005 Act, the patient should be unable to: – – –

understand the information relevant to the decision, retain the information, use the information as part of the process of making a decision.

The Act sets out a single clear test for assessing whether a person lacks capacity to take a particular decision at a particular time. It is a “decision-specific” test. No one can be labelled “incapable” as a result of a particular medical condition or diagnosis. Section 2 of the Act makes it clear that a lack of capacity cannot be established merely by reference to a person’s age, appearance, or any condition or aspect of a person’s behaviour that might lead others to make unjustified assumptions about capacity. In the following sections, assessment of competence with regard to various decisions and situations are examined.

1 Testamentary capacity The subject of testamentary capacity (ability to make and execute a will) needs to be addressed early on in dementia. The legal standard for this function is that individuals must know, at the time the will is signed or executed, the extent of their property, their blood relations and the general nature of their material and other assets. They must also have sufficient ability to make a reasonable judgment based on this knowledge. Their judgement should not be clouded by de-

Chapter 28: S. Bhattacharyya and A. Burns

lusions or other significant mental illness. A person is not bound to leave his assets to a particular person but the will would clearly be invalid if he or she had forgotten he was married or had children. Careful and searching questions need to be asked and simple standard tests of cognitive function are usually desirable.

2 Consent to treatment, hospital or nursing home admission In UK, Courts have held (Re T) that common law permits every person to have a right to refuse treatment even if such refusal should result in death. When obtaining consent to treatment the doctors overriding concern must always be to do what is in the patient’s best interest under Common Law. It is vital to make every attempt to ensure that the patient understands the nature of treatment, risks and benefits. If there is incapacity, it is good practice to seek the support of next of kin or carer for giving treatment for serious physical illness in the patient’s best interest; however this does not give legal authority to the next of kin to make decisions on the patient’s behalf. For mental disorder consideration should be given to the use of compulsion under the Mental Health Act legislation (1983). When there are uncertainties about the patient’s competence, it is wise to consult either colleagues who know the patient or to obtain an independent second opinion, including the opinion of a psychiatrist on the patient’s mental state. A patient’s lack of objection to stay in a hospital or nursing home can often be taken as consent. This is controversial and has recently been challenged in the Bournewood (2005) ruling whereby ECHR has ruled that Common Law is not sufficient to justify keeping such a “not unwilling” patient in hospital. A judgment of the ECHR is not directly binding on a NHS trust in the U.K. However, every trust is a “public authority” under the Human Rights Act 1998 and therefore bound to act in a way that is compatible with the ECHR and the cases decided under it.

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Another contentious area is the administration of covert medication to incapable patients who resist it when it is given openly (incapacitated patients who do not comply). This is judged ethically legitimate in exceptional circumstances (Treloar et al., 2000). Common law has to be invoked when the provisions of the MHA 1983 do not apply. It is important to balance ease of access to good clinical care against restrictions, which aim to prevent abuse. Section 5 of the Mental Capacity Act clarifies that, if a person provides care or treatment to someone who lacks capacity, then this can be done without incurring legal liability. The key lies in the proper assessment of capacity and what would be in the best interest of the person concerned. This will cover actions that would otherwise result in a civil wrong or crime if someone has to interfere with the person’s body or property in the ordinary course of caring for example, by giving an injection or by using the person’s money to buy items for them would not result in a civil wrong or crime. The ability to consent to medical treatment or care is a specific form of capacity that requires certain skills and cognitive abilities. In order to consent to treatment, individuals should be able to (BMA guidelines): –

– – – –

Understand in simple language what medical treatment is, its purpose and nature and why it is being proposed. Understand its principle benefits, risks and alternatives. Understand in broad terms what will be the consequences of not receiving the proposed treatment Retain information for long enough to make a decision. Make a free choice.

These guidelines should be followed whilst assessing for competence in consenting to any treatment. However one must always remember that confusion might be transient and that a mild dementia might not affect the patient’s ability to give informed consent.

Practice of competence assessment in dementia: UK

3 Capacity to enter into a contract, including marriage General legal rules apply to contracts and the starting point is that there is a presumption of capacity to enter into a contract. Four general rules are identified in BMA’s guidance (BMA 1995). These are: – – – –

Specificity relative to the contract. Capability of understanding the nature and effects of the specific contract and agreeing to it. Evidence of capacity at the specific moment in time. Intention to enter into a legally binding contract.

People without capacity are bound by the terms of a contract into which they have entered, even if it is unfair, unless it can be shown that the other party to the contract was aware of their mental incapacity, or should have been aware of this. If a person is covered by the jurisdiction of the Court of Protection because it has been established on medical evidence that they are incapable, by reason of mental disorder, of managing property and affairs, that person cannot enter into any contract, which is inconsistent with the Court’s powers. Once again formal assessment of competence may be needed. Marriage is a contractual relationship. There are instances in which one of the marital partners has not appeared to fully grasp the situation due to dementia. Marriage contracts may be invalid if one of the partners did not understand the nature of the marriage ceremony or understand the obligations and responsibilities of marriage.

4 Capacity to deal with financial affairs A power of attorney is a legal document by which a donor enables another person of his choice (the attorney) the authority to act in the donor’s name and on his behalf in relation to the donor’s property and financial affairs. The attorney can then act as if he

were the donor. In English law an ordinary power of attorney signed by a person who lacks capacity is null and void, unless it can be proved to have been signed during a lucid interval. Currently, such an attorney has no power to make decisions concerning personal matters or medical care and treatment on behalf of the donor, but this is going to change when the Mental Capacity Act 2005 comes into force. This will encompass Lasting Power of Attorney. The Enduring Powers of Attorney Act came into force in 1985, and EPA’s became available in England and Wales in 1986. The Act itself, states nothing about the degree of understanding the donor needs in order to make a valid EPA. This was later resolved in a test case Re K, Re F, (1988) in which the judge discussed the capacity to create an enduring power. He set out four pieces of information that any person creating an EPA should understand; – – – –

the attorney will be able to assume complete authority over the donor’s affairs, the attorney will be able to do anything with the donor’s property which the donor could have done, the authority will continue if the donor should become mentally incapable, if the donor should be or become mentally incapable, the power will be irrevocable without confirmation by the Court of Protection.

The judge in the case also commented that if the donor is capable of signing an enduring power of attorney but is not capable of managing and administering his own property or affairs, that the attorney has the obligation to register the power with the Court of Protection straight away. The donor and his closest relatives must be informed of the attorney’s intention to register the power. Both the donor and any of the relatives have the right to object to the registration of the power. For example, if they believe that the donor is not yet incapable of managing his affairs, or that the power may be invalid because it has been revoked by the donor. Currently EPA’s are restricted to financial matters only and can take effect at once and continue or

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when the donor becomes incapable. Like a will, an EPA can be made without a solicitor, but in practice it is wise to ask a solicitor to ensure that a form has been correctly completed. Referral to a Court of Protection (CP) should be considered if it is believed that the patient is becoming incapable of managing his/her affairs because of mental incapacity. Usually the nearest relative applies to the court but anyone with legitimate interest may apply. The doctor’s role in referrals to the CP is to complete a medical certificate stating that the patient is incapable of managing his/her affairs by virtue of a mental disorder, the nature of which must be described. The Court then appoints a ‘receiver’ who manages the patient’s affairs under the supervision of the Court. Once the CP has registered the power, the donor and the attorney no longer have concurrent authority. Only the attorney has the authority to manage and administer the donor’s property and affairs. If, however, even after registration the donor has capacity to perform some tasks, such as running a bank account or shopping, the fact that the power has been registered should not as a matter of practice prevent the donor from carrying out these activities. This legislation and guidance is currently in practice but will be superseded by the Mental Capacity Act 2005, which comes into force in 2007 with the following changes. Lasting Power of Attorney (LPA’s) The Act allows a person to appoint an attorney (similar to EPAs) to act on their behalf if they should lose capacity in the future. It also allows LPAs to make health and welfare decisions. Court appointed deputies The Act provides for a system of court appointed deputies to replace the current system of receivership in the Court of Protection who will be able to take decisions on welfare, healthcare and financial matters as authorised by the Court but will not be able to refuse consent to life-sustaining treatment.

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New Court of Protection The new Court will have jurisdiction relating to the whole Act and will be the final arbiter for capacity matters with its own procedures and nominated judges. New Public Guardian The Public Guardian and his staff will be the registering authority for LPAs and deputies. They will supervise deputies appointed by the Court and provide information to help the Court make decisions.

5 Advance directives and end of life decisions An Advance Directive is in most cases a document signed by a competent person giving direction to help care providers about future treatment choices in certain circumstances. Before the Mental Capacity Act 2005 comes into force there is no specific Act of Parliament in the U.K. that covers Advance Directives, but they are recognized and must be upheld under common law as long as certain criteria are followed. The criteria required for an Advance Directive to be valid were identified (Jones, 2005) by Hughes in AK (Adult Patient) and by Munby in HE vs A Hospital NHS Trust (2003). Doctors should respect these criteria but cannot be forced to commit illegal acts such as euthanasia. The Mental Capacity Act 2005 provides a legal basis underpinning the rights of an advance directive. The following factors are addressed in the Act: –

–

– –

People may make a decision in advance to refuse treatment if they should lose capacity in the future. An advance decision will have no application to any treatment, which a doctor considers necessary to sustain life unless strict formalities have been complied with. The decision must be in writing, signed and witnessed. There must be an express statement that the decision stands “even if life is at risk”.

Practice of competence assessment in dementia: UK

The importance of Advance Directives arises especially in situations where appropriateness of cardiopulmonary resuscitation for inpatients with dementia arises. It is important to consider the patient’s wishes but it is also prudent to involve the carers, and members of the multidisciplinary team, especially if the patient is deemed to be incapable. The decision, in the end should once again always be what the best option is available for the patient.

6 Driving and dementia It is vital that when a diagnosis of dementia has been discussed, the patient is advised to inform DVLA of the diagnosis. Conflicts may arise, for example, between the need (and legal obligation) to protect the public from an impaired person with dementia who is a danger when driving, and the ethical obligation to preserve medical confidentiality (DVLA, 1999). The GMC’s position on breach of confidentiality and obligations under law suggests that the doctor should take direct action to inform the DVLA if it is believed that there is serious risk to public and that driving is continuing despite advice to the contrary (DVLA, 2001). It seems prudent to ensure that there is documentary record that advice of an appropriate nature has been given to the older person diagnosed with dementia and this should include driving and legal obligations to inform the DVLA. This is important in relation to subsequent legal action such as from a fellow road user accidentally injured by a driver with dementia. The most recent 2005 (DVLA, 2005) guidance states that it is extremely difficult to assess driving ability in those with dementia but those with poor short-term memory, lack of insight and judgement are almost certainly not fit to drive. It emphasizes explicitly that the “DVLA must be notified as soon as diagnosis (of dementia) is made” (DVLA, 1999). It also advises that when a patient cannot be persuaded to stop driving, or when the doctor is given or finds evidence that a patient is continuing to drive contrary to advice, the doctor should disclose relevant medical information im-

mediately, in confidence, to the medical advisor at the DVLA. Before taking action, the doctor should inform the patient of the decision to do so. Once the DVLA has been informed, the doctor should write to the patient to confirm that disclosure has been made. Guidance also suggests that every reasonable effort to deter patients from driving should be made and this may include telling the next of kin of the situation. DVLA acknowledges the variable presentations and rates of progression in different patients and often those with mild dementia are issued a licence subject to annual review.

7 Research and dementia The Mental Capacity Act 2005 sets clear parameters for research into dementia in those who lack capacity to consent to participation. These mirror the present guidelines used in practice: –

– –

–

–

Research involving, or in relation to, a person lacking capacity may be lawfully carried out if an “appropriate body” (normally a Research Ethics Committee) agrees that the research is safe, relates to the person’s condition and cannot be done as effectively using people who have mental capacity. The research must produce a benefit to the person that outweighs any risk or burden. Alternatively, if it is to derive new scientific knowledge it must be of minimal risk to the person and be carried out with minimal intrusion or interference with their rights. Carer providers or nominated third parties must be consulted and agree that the person would want to join an approved research project. If the person shows any signs of resistance or indicates in any way that he does not wish to take part, the person must be withdrawn from the project immediately. Transitional regulations will cover research started before the Act where the person original-

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ly had capacity to consent, but later lost capacity before the end of the project. A balance needs to be attained between recruiting such patients for research and the need to protect the rights of such individuals. In conclusion, achieving a proper legal and ethical balance to make decisions can be particularly taxing in people with dementia. All clinicians should ensure sufficient familiarity with current legal and ethical concepts and how these concepts might be applied. No country in Europe has a specific law dealing with all the different issues facing people with dementia as well as their care providers. It would be practical for the clinician to work in conjunction with the family to resolve these dilemmas. At all times it is prudent to discuss or seek advice from appropriate colleagues, ethicists or even trust/hospital legal representatives.

References Bamford C et al. (2004) Disclosing a diagnosis of dementia: a systematic review. Int J Geriatr Psychiatry 19(2): 151–69 British Medical Association (1995) Assessment of mental capacity: Guidance for doctors and lawyers. A report of the BMA and The Law Society. BMA, London

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DVLA Guidelines: http://www.dvla.gov.uk/at_a_glance/ch4_ psychiatric.htm Good Medical Practice, GMC. http://www.gmc-uk.org/guidance/ library/GMP.pdf HE vs A Hospital NHS trust. Family Division 2003 HL v United Kingdom, Application no. 45508/99, decision of 5 October 2004 Jones R (2005) Mental Capacity Act Manual. Sweet and Maxwell, London Mental Capacity Act 2005: http://www.opsi.gov.uk/acts/ acts2005/20050009.htm Royal College of Physicians and Royal College of Psychiatrists (2003) The psychological care of medical patients: a practical guide. RCP, RCPsych, London Re AK (Adult patient) (Medical treatment: consent) (2001) 1 FLR 129, (2001) 58 BMLR 151 Re C (Adult: Refusal of Treatment) (1994) 1 WLR 290; (1994) 1 All ER 819 Re K, Re F (1988) 1 All ER 358 Re T (adult refusal of treatment) (1994 1 All ER 819) Re T refusal of medical treatment) [(1992 4 All ER 649 (CA)] R v Bournewood Community and Mental Health NHS Trust, ex parte L [1999] AC 458 Tan JOA, McMillan JR (2004) The discrepancy between the legal definition of capacity and the BMA’s guidelines. JME 30: 427–29 Treloar et al. (2000) APT. Administering medicines to patients with dementia and other organic cognitive syndromes

LIST OF CONTRIBUTORS

Bartley Mairead, Department of Medical Gerontology, Adelaide and Meath Hospital, Dublin 24, Ireland E-mail: [email protected] Bernabei Roberto, Prof., Direttore Dipartimento di Scienze Gerontologiche, Geriatriche e Fisiatriche, Università Cattolica del Sacro Cuore, Largo F. Vito, 1, 00168 Rome, Italy E-mail: [email protected] Bhattacharyya Sarmishtha, Specialist Registrar in Old Age Psychiatry, Stepping Hill Hospital, Stockport, SK2 7JE, UK E-mail: [email protected] Björkstén Karin Sparring, M.D. Ph.D., Specialist of Psychiatry and Geriatrics, Administrativa enheten, Psykiatri Sydöst, Ektorspsvägen 2B, 131 45 Nacka, Sweden E-mail: [email protected] Bouyssy Marie, M.D., Centre Hospitalier Régional Universitaire de Tours, 37044 Tours, France E-mail: [email protected] Bowman Deborah, Senior Lecturer in Medical Ethics and Law, Room 43, 1st Floor, Jenner Wing, Medical and Healthcare Education, St George’s, University of London, Cranmer Terrace, London SW17 0RE, UK E-mail: [email protected] Brand Matthias, PhD, University of Bielefeld, Department of Physiological Psychology, 33501 Bielefeld, Germany E-mail: [email protected]

Burns Alistair, MD, FRCP, FRCPsych, Prof. of Old Age Psychiatry, University of Manchester, Education and Research Centre, Wythenshawe Hospital, Manchester M23 9LT, UK E-mail: [email protected] Buss Dorthe Vennemose, Memory Disorders Research Group, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, 9 Blegdamsvej, 2100 Copenhagen, Denmark E-mail: [email protected] Calabrese Pasquale, Priv.-Doz. Dr.rer. nat., Department of Neuropsychology and Behavioural Neurology, University Clinic (Knappschaftskrankenhaus), Faculty of Medicine, Ruhr-University, In der Schornau 23-25, 44892 Bochum, Germany E-mail: [email protected] Camus Vincent, Prof., Centre Hospitalier Régional Universitaire, Université François Rabelais de Tours, 37044 Tours Cedex 01, France E-mail: [email protected] Carvalho Pedro Silva, Psychiatrist, Hospital Magalhães Lemos and Hospital Prelada-Porto, Old Age Psychiatry Consultant of S.S. Santa Casa Misericórdia do Porto, R. João Deus 777, 4100-462 Porto, Portugal Cerejeira Joaquim, Register Psychiatry, Psychiatric Clinic, Coimbra University Hospitals, Praceta Mota Pinto, 3000 Coimbra, Portugal E-mail: [email protected]

List of Contributors

Cˇvancˇarová Hana, JUDr., Judge of the Appellation Court, Veˇtrušická 878/28, 182 00 Praha 8 – Kobylisy, Praha, Czech Republic E-mail: [email protected] Despos Katerina, Lawyer, 6, Odysseos street (1st Parodos Ampelonon), 55535 Pylaia, Thessaloniki, Greece

Hughes Julian C., MA, MB ChB, MRCPsych, PhD, Ash Court, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK Consultant and Honorary Clinical Senior Lecturer in Old Age Psychiatry, North Tyneside General Hospital and the Institute for Ageing and Health, Newcastle University, UK E-mail: [email protected]

Engedal Knut, Prof. of Geriatric Psychiatry, Norwegian Centre for Dementia Research, Department of Geriatric Medicine, Ullevaal University Hospital, 0407 Oslo, Norway E-mail: [email protected]

Johansson Kurt, M.D., Ph.D., Traffic Medicine Center, Department of Geriatric Medicine, Karolinska University Hospital, 141 86 Stockholm, Sweden E-mail: [email protected]

Firmino Horàcio, Coordinator of Gerontopsychiatry, Psychiatric Clinic, Coimbra University Hospitals, Clinica Montes Claros, Rua Machado de Castro 4, 3000 Coimbra, Portugal E-mail: [email protected]

Jurašková Božena, MUDr., Ph.D., Consultant Geriatrician, Department of Gerontology, Teaching Hospital Hradec Králové, Univerzita Karlova v Praze, poštovní prˇihrádka 38, Šimkova 870, 500 38 Hradec Králové 1, Czech Republic E-mail: [email protected]

Fountoulakis Konstantinos N., Lecturer in Psychiatry, 3rd Department of Psychiatry, Aristotle University of Thessaloniki, Greece, 6, Odysseos str. (1st Parodos Ampelonon), 55535 Pylaia, Thessaloniki, Greece E-mail: [email protected]

Karmelitová Pavla, Mgr., Head of Department of Health and Social Care, Odbor zdravotnictví a sociálních služeb, Úrˇad MCˇ Praha 8, Zenklova 1 180 48 Praha 8, Czech Republic E-mail: [email protected]

Graf Marc, Dr. med., Forensic psychiatry, University Psychiatric Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland E-mail: [email protected] Hadrys´ Tomasz, Dr., Department of Psychiatry, Wroclaw Medical University, Pasteura 10, 50 367 Wroclaw, Poland E-mail: [email protected] Holmerová Iva, MUDr., Ph.D., Director and Consultant Geriatrician, Department of Management and Supervision, Faculty of Humanities, Charles University Praha, Centre of Gerontology, Šimu ˚nkova 1600, 18200 Praha 8, Czech Republic E-mail: [email protected]

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Kerschen Nicole, Senior Researcher CNRS IRERP UMR CNRS N° 7029 University Paris X 200, avenue de la République 92 Nanterre, France E-mail: [email protected] Kiejna Andrzej, Prof. in Psychiatry, Epidemiologist, Department of Psychiatry, Wroclaw Medical University, Pasteura 10, 50 367 Wroclaw, Poland E-mail: [email protected] Kirkevold Øyvind, Research scholar, Registrated Nurse (RN), Master of Public Health (MPH), Dr. Phil. (PhD), Norwegian Centre for Dementia Research, Vestfold Mental Health Care Trust, Tønsberg, P.O. 64, 3107 SEM, Norway E-mail: [email protected]


Krebs-Roubicek Eva, Dr. med., president of the swiss society for geriatric psychiatry, University Psychiatric Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland E-mail: [email protected] Lawlor Brian, Prof., MB, MD, FRCPsych, Consultant Old Age Psychiatrist, Mercer’s Institute for research in aging, Hospital 4, St. James’s Hospital, Dublin 8, Ireland E-mail: [email protected] Legay Emilie, M.D., Centre Hospitalier Régional Universitaire de Tours, 37044 Tours, France E-mail: [email protected] Liperoti Rosa, MD, MPH, Centro di Medicina dell’Invecchiamento, Università Cattolica del Sacro Cuore, Largo A. Gemelli 8, 00168 Rome, Italy E-mail: [email protected] Lipp Volker, Prof. Dr., Universität Göttingen, Institut für Privat- und Prozessrecht, Lehrstuhl für Bürgerliches Recht, Zivilprozessrecht und Rechtsvergleichung, Platz der Göttinger Sieben 6, 37073 Göttingen, Germany E-mail: [email protected] Luanaigh Conor Ó, Dr. MB, MRCPsych, Research Fellow and Honorary Lecturer in Old Age Psychiatry, Mercer’s Institute for Research in Aging, Hospital 4, St. James’s Hospital, Dublin 8, Ireland E-mail:[email protected]

Markowitsch Hans J., PhD, University of Bielefeld, Department of Physiological Psychology, PF 100131, 33501 Bielefeld, Germany E-mail: [email protected] Marksteiner Josef, Department of General Psychiatry, Medical University Innsbruck, Anichstrasse 35, 6020 Innsbruck, Austria E-mail: [email protected] Marquez Fernando, M.D., Assoc. Prof. of Psychiatry, Department of Psychiatry, University of Santiago de Compostela (USC), 15782 Santiago de Compostela, Spain E-mail: [email protected] Mateos Raimundo, M.D., PhD., Prof. of Psychiatry, Department of Psychiatry, University of Santiago de Compostela (USC), Coordinator of the Psychogeriatric Unit, CHUS University Hospital, Santiago de Compostela, Spain E-mail: [email protected] O’Neill Desmond, MD FRCPI, Assoc. Prof. (Medical Gerontology), Trinity Centre for Health Sciences, Adelaide and Meath Hospital, Dublin 24, Ireland E-mail: [email protected] Olde Rikkert Marcel GM, MD, PhD, Prof. in Geriatric Medicine, University Medical Centre Nijmegen; Alzheimer Centre Nijmegen (UMCN), Department of Geriatric Medicine, University Hospital Nijmegen, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands E-mail: [email protected]

Lundberg Catarina, Psychologist, PhD, Traffic Medicine Center, Department of Geriatric Medicine, Karolinska University Hospital, 141 86 Stockholm, Sweden E-mail: [email protected]

Provazníková Eva, DiS, Project manager, Czech Alzheimer Society, Diakonie CˇCE, Belgická 22, 120 00 Praha 2, Czech Republic E-mail: [email protected]

Maeck Lienhard, Dr.med., University Psychiatric Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland E-mail: [email protected]

Rokosová Martina, Mgr., Vice Chairperson, Czech Alzheimer Society, Šimu ˚nkova 1600, 18200 Praha 8, Czech Republic E-mail: [email protected]

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Rymaszewska Joanna, Dr, Assoc. Prof., Specialist in Psychiatry, Department of Psychiatry, Wroclaw Medical University, Pasteura 10, 50 367 Wroclaw, Poland E-mail: [email protected]

Tsolaki Magda, Dr, MD, PhD, Assoc. Prof. of Neurology, 3rd Department of Neurological Clinic, Hospital G. Papanikolaou, 570 10 Thessaloniki, Greece; Aristotle University of Thessaloniki, Greece E-mail: [email protected]

Soto Maria E., Alzheimer’s Disease Research and Clinical Center, Department of Internal Medicine and Geriatrics, Toulouse University Hospital France, Service de Médecine Interne et de Gérontologie Clinique, Pavillon J. P. Junod, Centre Hospitalier Universitaire La Grave-Casselardit, 170 avenue de Casselardit, TSA 40031, 31059 Toulouse cedex 9, France E-mail: [email protected]

Vanˇková Hana, MUDr, Research Coordinator, Gerontologické centrum, Šimu ˚nkoveˇ 1600, 182 00 Praha 8 – Kobylisy, Czech Republic E-mail: [email protected]

Stoppe Gabriela, Prof. Dr. med., Professor of Psychiatry, University Psychiatric Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland E-mail: [email protected] Sulkava Raimo, Prof. of Geriatrics, University of Kuopio, Department of Public Health and Clinical Nutrition, P.O. Box 1627, 70211 Kuopio, Finland E-mail: [email protected] Ta˘taru Nicoleta, Dr., Senior Consultant Psychiatrist, Forensic Hospital S¸tei, Bihor, România, 36, Cuza Voda˘ Street, 410101 Oradea, România E-mail: [email protected] Tsantali Eleni, Dr, PhD Psychologist, The Greek Association of Alzheimer’s Disease and Related Disorders, Daily Care and Research Center of Cognitive Rehabilitation, Merkouriou 5, 54655 Thessaloniki, Greece E-mail: [email protected]

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Vellas Bruno, Alzheimer’s Disease Research and Clinical Center, Department of Internal Medicine and Geriatrics, Toulouse University Hospital France, Service de Médecine Interne et de Gérontologie Clinique, Pavillon J. P. Junod, Centre Hospitalier Universitaire La Grave-Casselardit, 170 avenue de Casselardit, TSA 40031, 31059 Toulouse cedex 9, France E-mail: [email protected] Vorm Anco vd, Researcher, Department of Ethics, Philosophy and History of Medicine, University Medical Centre Nijmegen (UMCN), 6500 HB Nijmegen, The Netherlands E-mail: [email protected] Waldemar Gunhild, M.D. Ph.D., Professor of Neurology, Memory Disorders Research Group, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, 9 Blegdamsvej, 2100 Copenhagen, Denmark E-mail: [email protected] Wancata Johannes, Prof. Dr. med., Department of Psychiatry and Psychotherapy, Division of Social Psychiatry, Medical University of Vienna, Währinger Gürtel 18–20, 1090 Vienna, Austria E-mail: [email protected]

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