Healthcare and decision-making in dementia
The publication of Yearbooks was an integral part of our “European Collaboration on Dementia – EuroCoDe” project and the first three editions were published with the financial support of the public health programme of the European Commission. The aim of these yearbooks was to compare the situation of people with dementia and their carers in the different Member States of the European Union, as well as in Iceland, Norway, Switzerland and Turkey. The previous editions provided detailed information on the availability and reimbursement of anti-dementia drugs, the prevalence of dementia, the provision of home care and a decription of social support systems.
Due to the great interest generated by our previous yearbooks and the positive echo provided by policy makers, researchers and Alzheimer associations, Alzheimer Europe decided to continue this type of publication despite the end of the EuroCoDe project. It therefore gives me great pleasure to introduce the fourth edition of our “Dementia in Europe Yearbook” which is dedicated to present national laws with regard to healthcare decision making by people with dementia and which looks at such issues as consent, the use of advance directives, access to diagnosis and information and end-of-life issues.
With this year’s focus, we decided to revisit the findings of the Alzheimer Europe “Lawnet” project which was carried out in 1998 and 1999 and which resulted in the production of national reports on the legal rights of people with dementia, as well as recommendations on how to improve the legal rights and protection of adults with incapacity due to dementia.
Some of the key priorities identified by Alzheimer Europe in its recommendations were the right for people with dementia to be informed about their diagnosis and the importance of allowing people with dementia to be fully involved in all decisions affecting their lives including through the writing of advance directives or the appointment of representatives.
The two year “Lawnet” project found significant variations between European countries in how these recommendations were met. Some countries still had mental health legislation dating back to the early 1960’s, while other countries had adopted or were in the process of carrying out fundamental reforms in this area.
Since the initial project only covered the then 15 Member States of the European Union, we felt it important to examine the legislations of the 10 new Members States, as well as other countries covered by Alzheimer Europe member organisations (Croatia, Iceland, Norway, Switzerland and Turkey) and to see whether any progress had been made in the already covered countries in meeting the recommendations that Alzheimer Europe had made.
On behalf of Alzheimer Europe, I would like to thank Dianne Gove, the information officer of Alzheimer Europe for the thorough work she did in gathering the information from 32 European countries and summarising the situation. She was able to do so with a number of legal experts identified by our national member organisations and a detailed list of all contributors is included in the acknowledgements section of the book.
Our thanks also go to Fondation Médéric Alzheimer which shares our passion for improving the lives of people with dementia and ensuring their rights to self-determination and autonomy are respected. We are very grateful to the financial support they provided for the data collection and publication of this Yearbook.
I hope that you will find these national reports of interest and that policy makers and Alzheimer associations will be able to find good and best practices in other countries that may lead to reforms to improve the legal rights of people with dementia in their own countries.
Last Updated: Wednesday 27 April 2011