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2020 Legal capacity and decision making:The ethical implications of lack of legal capacity on the lives of people with dementia

Ethical issues in practice


Dear Colleagues, Friends, Ladies and Gentlemen,

I would like to welcome the latest Alzheimer Europe Ethics Report. This report is a result of work carried out by a panel of experts coordinated by Dianne Gove. The members of this panel included

a spectrum of Alzheimer societies representatives, scientists and professionals, amongst whom ethicists, lawyers, psychiatrists, philosophers and dementia specialists, and especially a representative of the European Working Group of People with Dementia, because Alzheimer Europe values the contribution of this group in all its work.

This ethics report leads us through subtle, complex and complicated issues of legal capacity and decision making of people living with dementia, and considers the ethical implications of lack of legal capacity on their lives. As usual, the introductory part provides a general overview of the key issues, and explains frameworks that present a basis for further consideration. The issue of legal capacity and decision making of people with dementia is complex and difficult in principle, here even more so, because the task of the expert group was to consider legal capacity not only in the individual, local or national context, but also to address this problem from the European perspective. Therefore, the ethical questions concerning this topic are discussed not only from the perspective of different disciplines, professions and stakeholders, but also drawing on the diversity of European legislation.

The report leads us through the most important topics: the exercise of legal capacity in the everyday lives of people with dementia and their families, participation in research, coercive measures, restrictions of freedom and the use of restraint etc. Also of importance, it looks at civil and political life, including the right to vote, formal relationships, making a will and other important situations that occur during the life course.

I am convinced that the readers of this report will be able to find important information about most areas that are connected to legal capacity and decision making of people with dementia. However, sometimes questions are raised and discussed in this report without necessarily providing clear guidance and conclusions and I think that this is also a very positive feature of this publication. In ethical considerations usually it is not possible to find only straightforward solutions, norms and guidance. These have to become part of different levels of legislation and standardization. The main role of ethics is to question the most important practices and procedures and to open the way to finding better solutions. I think that also in this regard this latest ethics report has fully achieved its goal.

Iva Holmerová

Chair of Alzheimer Europe



Last Updated: Monday 08 March 2021


  • Acknowledgements

    The report entitled “Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union