Legal & Ethical Priorities
13. Alzheimer Europe and its member organisations are committed to promoting the autonomy and self-determination of people with dementia. The disclosure of the diagnosis to people with dementia is of paramount importance for people with dementia to take an active part in decisions affecting their lives. Yet, the Alzheimer Europe survey revealed that the disclosure rates varied greatly between European countries with 80% of people being informed in Scotland, whereas only 23% of people were similarly informed in Spain.
Alzheimer Europe calls upon national governments and the medical profession to reinforce the provisions in medical codes of practice regarding the disclosure of diagnosis and to educate medical professionals on how to disclose a difficult diagnosis to patients.
14. Unfortunately, cognitive abilities steadily decline and there generally comes a time when the person with dementia can no longer manage entirely alone and where he/she will need help in making decisions of varying importance, such as financial management or medical decisions. Assistance could be provided by a guardian/lawful representative, but national laws differ widely as discovered by Alzheimer Europe when it carried out its Lawnet projects .
Alzheimer Europe calls upon the Council of Europe and national governments to exchange best practices with regard to national guardianship systems. In particular, Alzheimer Europe advocates for national laws which give the opportunity to people with dementia to nominate guardians or legal representatives which may represent and support them in both their financial management and in healthcare decisions.
15. A guardian or legal representatives can provide much needed support to people with dementia, yet he/she should act in the best interests of the person with dementia and taking full account of their previously expressed wishes. Advance directives would facilitate the work of legal representatives and would also provide guidance for people with dementia who do not have a legal representative .
Alzheimer Europe urges governments to provide a clear statutory basis for effective advance directives with appropriate safeguards and a framework of procedures to ensure their effectiveness. Alzheimer Europe expects governments to set up appropriate systems for the registration, use and review of advance directives.
 Alzheimer Europe (2002): Comparative analysis of legislation in Europe relating to the rights of people with dementia available on http://www.alzheimer-europe.org.
Last Updated: Wednesday 01 July 2009