Introduction

In the framework of two projects funded by the European Commission, Alzheimer Europe carried out a comparative analysis of legislation affecting people with dementia and their carers and developed recommendations on how to improve the legal rights of people with dementia.

The underlying philosophy expressed in these recommendations concerns a respect for the human rights to dignity, self-respect and autonomy of people with dementia.

Alzheimer Europe believes that:

• every person informed of a diagnosis of Alzheimer's disease should:
  • be informed of the possibility of taking decisions about his future (treatment, guardian, palliative care, end-of-life, etc.)
  • be able to get the help of a professional in taking those decisions, and
• a legal framework should ensure the respect of wishes expressed in this way.

The right for people with dementia to take an active part in decisions affecting their lives is currently dependent on whether they are informed of their diagnosis. Yet even in cases where people with dementia have been informed of their diagnosis and have written an advance directive (also known as a living will), current medical and legal practice does not guarantee that their previously expressed wishes will be respected.

Although there is a growing trend towards a doctor-client relationship and away from paternalism, in most European countries doctors can still choose between the principles of “best interests” and “autonomy” as there is no clear legislation on this issue.

Duration

The project started in January 2004 and will end in June 2005.

Participants

The working group consists of:

1. Mr Peter ASHLEY Non-Executive Director, Warrington NHS Primary Care Trust (United Kingdom)
2. Dr Holger BAUMGARTNER Ethic Commission, University of Innsbruck, Austria
3. Ms Dorthe BUSS Juridisk Projektkoordinator, Hukommelsesklinikken (Danemark)
4. Mr Jean GEORGES Executive Director, Alzheimer Europe
5. Dr Elaine GADD Special Adviser, Bioethics Dept, Council of Europe
6. Ms Dianne GOVE Information Officer, Alzheimer Europe
7. Dr Alan JACQUES Convener, Alzheimer Scotland-Action on Dementia (United Kingdom)
8. Ms Nicole KERSCHEN Researcher, Centre National de Recherche Scientifique - CNRS (France)
9. Dr Anna MÄKI-PETÄJÄ Researcher, University of Helsinki, Dept of Law (Finland)
10. Ms Anna ROVIRA Lawyer, Alzheimer Catalonia (Spain)
11. Ms Frédérique JEZEQUEL Lawyer, Fondation Médéric Alzheimer (France)

Objectives

The aim of Alzheimer Europe is to ensure that every person with Alzheimer's disease in an early stage is informed about the possibility of legally expressing his/her wishes for the future in the form of an advance directive. A further aim is to provide people with information on the various medical, legal, ethical and personal issues surrounding advance directives so that they can make an informed decision on whether and how to write one in order to best protect their own interests and exercise their autonomy.

Methodology

• Launch of the project with a meeting in Brussels 19 January 2004
• Literature review
• Request for opinions from ethics committees
• Sending out of questionnaire to national governments on the legal aspects linked to the use of advance directives
• Collection of information on relevant laws on advance directives
• Completion of database/summary of existing legal provisions
• Drafting of working document on the ethical, medical, legal and personal issues surrounding the use of advance directives
• Drafting of position paper on advance directives in collaboration with the project participants
• Meeting to discuss position paper
• Redrafting and finalisation of the position paper
• Drafting and finalisation of report on the ethical, medical, legal and personal issues surrounding the use of advance directives (based on working document)
• Consultation with member associations, members of the expert advisory groups and people with dementia
• Approval by the Board of Alzheimer Europe
• Publication and dissemination of the position paper

Results

• Position paper on advance directives.
• Document containing background information on advance directives
• Country reports
• Statement of values (example for discussion + further development)

Please go to the section "Legal Rights" in order to access the above-mentioned documents