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P19. Legal systems and regulations

Detailed Programme, abstracts and presentations

P19.1. Mental capacity in Ireland: moving towards a modern approach

Eleanor Edmond

Issues of capacity in Ireland are currently governed by the Regulation of Lunacy Acy 1871. The absence of modern capacity legislation not only places Ireland in breach of international human rights standards (for example, leaving Ireland unable to ratify the Convention on the Rights of People with Disabilities) but impacts directly on the day to day to life of people with capacity issues, the largest single group of whom being people with dementia and their families.

Following from the Law Reform Commission’s Report on Vulnerable Adults and the Law (LRC 83 – 2006), new mental capacity legislation is at draft stage and there is a commitment from the recently elected government that it will be brought before the Dail (Parliament) at an early date.

The proposed legislation will be largely similar to the equivalent UK legislation, with some notable omissions. It will introduce the functional definition of capacity and the concept of assisted decision making and as such offers an important opportunity to empower people with dementia and to educate health and legal professionals and the public.

However the proposed legislation as it stands does not address the issue of the limitations of the current court system in empowering people with limited capacity, and crucially omits any provision for advocacy.

The Alzheimer Society of Ireland is at the early stages of a targeted campaign to influence the content of the legislation and the manner of its eventual implementation, aiming to draw on international experience to achieve the best possible result in terms of ensuring the human rights of people with dementia.

P19.2. Dementia, testamentary capacity and undue influence

Harold Kasprzak

In the last years a lot of attention has been paid to the assessment of people with dementia’s capacity to consent to treatment or research (Moye & Marson 2007). Testamentary capacity, i.e. the capacity to make a will, has received less attention. Nevertheless, the subject is of the most important legal and ethical issue if the dignity and autonomy of people with dementia are to be respected not only in the clinical context but also in everyday life. Because of their cognitive problems, people with dementia are at greater risk to be victims of ‘undue influence’ from individuals using coercion, compulsion or restraint to their own benefit. On the other hand, because of the medical diagnosis, people with dementia are also at risk to be automatically considered as incompetent to make a will, and thus to be refused the right to decide for themselves to whom they want to bequeath their assets.

In this presentation, we will make a brief review of the international literature on testamentary capacity and undue influence in the context of dementia. We will also scrutinize, through a case law study, how those issues are handled in practice by lawyers and medical experts in European countries. Finally, we will give some examples of concrete initiatives aim to improve professional’s practice on this ground.

In the last decades, major evolutions have occurred in the field of capacity of people with dementia to make a will. Currently, both literature and case law emphasise that neither the age of the person nor a diagnosis alone implies de facto that the person is incapable of making a will. Moreover, it is recognised that testamentary capacity is a very specific ability that has to be assessed through specific criteria, and with regard to the person’s specific situation (Shulman et. al. 2007). However, in some cases, even experienced professionals disagree whether one person is capable or not of making a will.

The picture becomes even more complex when it comes to undue influence. In the context of dementia, it might be a particularly challenging task to distinguish it from ‘due influence’ i.e. the natural favoritism or special devotion to particular heirs that is seen in many families (Gutheil 2007).

Finally, wills are most of the time challenged retrospectively, which add complexity to the situation. For many authors, it is at the time the will is made that the testamentary capacity should be assessed. Therefore, guidelines have been established in some countries, e.g. in the Netherlands, to increase lawyers’ awareness on this topic and to help them in that difficult task. According to those guidelines, it is a duty to protect people with dementia against undue influence. But when the person is still capable to make a will, it is also a duty to protect their will against possible challenge in the future by accumulating evidence that the person was competent at that time.

P19.3. Dementia: autonomy and decision-making

Jan Killeen

This presentation provides a critique of the Adults with Incapacity (Scotland) Act 2000 from the perspective of family members who have been granted financial and welfare (including health care) decision-making powers; and from a human rights based perspective with regard to people with dementia who lack some or all capacity to make decisions in their own interests. It is based on the final findings from the research and development project, ‘Dementia: autonomy and decision-making. Principles into Practice’ (forthcoming report October 2011) and will provide participants with the first opportunity to see the best practice guide to decision-making for to help (family members) appoint as guardians or attorneys. The guide is base on interviews and focus groups of carers in the Netherlands, Berlin, England and Scotland. The presentation will also be informed by an analysis of key issues relating to the implementation of the Act, including those relating to restrictions on freedom and deprivation of liberty, which are currently being reviewed by the Scottish Law Commission.

P19.4. The vulnerability of a person with dementia and models of protection

Anna Mäki-Petäjä-Leinonen, Sirkkaliisa Heimonen

Dementia can cause psychological and social vulnerability already in the early stages of the illness. Psychological vulnerability includes deteriorating in cognitive skills and changes in the personal life. Social vulnerability includes changes in relationships and attitudes of other people toward the person with dementia. The vulnerability of psychological factors and social relations deteriorates inclusion and meaningfulness in life. In order to understand the vulnerability in connection with illness, it is important, at the early stages of illness, to identify thoughts and emotions concerning dementing illness, to recognize the personal losses and changes caused by the illness, and to find and support models of adaptation.

Because the vulnerable person is very frail, it is easy to hurt her/him physically, psychologically and socially. The protection of a person with memory illness includes the understanding of the effects of the illness, respectful encounter, and appropriate services. On a larger scale, the question of protection is concerned with influencing general attitudes. These all are important in supporting quality of life and preventing isolation of people with dementia.

The protection of a person with dementing illness also requires legal measures and can be implemented with two legal principles, autonomy and protection. The mere diagnosis of dementia as such does not automatically remove autonomy; a person with dementia can be able to make legally valid decisions concerning life and property. However, deterioration of cognitive capacity will eventually lead to a situation where the person with memory illness will no longer be able to make independent decisions. Even in these situations, autonomy should be respected if the person has expressed her/his will about the given issue while still capable of doing so. The principle of protection of the person with dementia means the right to be protected against outside infringement and, also, for legal offences caused by the person with dementing illness. In addition, the physical integrity of the person with dementia should be protected from infringements.

The perspective of vulnerability helps to perceive the individual effects of dementing illness and it enables to investigate the means of how to protect a vulnerable person. Vulnerability offers a basis for the discussion of ethical factors concerning dementia and how to encounter a person with dementing illness. Understanding and recognizing vulnerability help us to develop new methods for promoting the inclusion, quality of life and well-being of people with dementia.

P19.5. ‘Thinking earlier… about later’: the application of advance care planning for people with dementia

Gerrit Rauws, Bénédicte Gombault, Saïda Sakali

The King Baudouin Foundation organized focus groups and debates, with citizens and actors in the field, on the application of advance care planning in Belgium with a particular focus on dementia.

This project was initiated because the wishes of a person with dementia related to end-of life care are often not known, not formulated and even more, not respected and this has an influence on the quality of life of people with dementia and their family.

The discussion focused on the following questions:

How to prepare for old age and the progressive arrival of a certain degree of dependency? How to guarantee that our expectations, wishes and opinions regarding this phase of life are respected? What to do in the case of dementia?

When, how and with whom should we speak?

Does advance care planning, which involves a process of dialogue with the family and carers, permit greater respect for the autonomy of people with dementia and enable them to improve the quality of their lives?

Citizens, carers at home and in institutions, general practitioners and specialists, psychologists, social workers, spiritual advisers and directors of care homes discussed their experience in the field in (14) focus groups. Experts from a range of different backgrounds were involved in the process and also gave their opinions.

Whilst in theory most participants adhered to the idea of advance care planning, accounts highlighted the difficulties of translating this idea into practice. This was above all a question of going beyond the taboos and misunderstandings and changing mentalities. Interesting practices as well as a number of priority actions were proposed with a view to enabling, as much as possible, the autonomy of the person with Alzheimer’s disease to be respected and his/her quality of life to be improved.

 

 
 

Last Updated: Wednesday 26 October 2011

 

 
  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene
 
 

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