On 31 January 2024, Alzheimer Europe launched its 2023 Dementia in Europe Yearbook dedicated to legal capacity and supported decision-making for people living with a diagnosis of dementia. The Yearbook examines the overarching European and International accords which set out how the rights and wishes of people with dementia are protected, especially where the capacity of a person may be affected by their illness, as well as how national laws and policies address this issue. Specifically, the Yearbook provides an overview of the provisions of the Charter of Fundamental Rights (CFR), the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the HCCH 2000 Protection of Adults Convention (the Hague Convention) before exploring in detail how each European country addresses capacity in relation to issues such as the creation of wills, powers of representation and consent to treatment etc. Across European countries, policies and legislation related to legal capacity vary considerably, with mechanisms for powers of representation (e.g. powers of attorney) and substitute decision making (e.g. guardianship), taking different approaches.
Alzheimer Europe was keen to understand how legislation had developed to incorporate supported decision-making, reflecting the rights-based approach of European and International treaties. There was evidence of progress in some countries, including legislative reforms and development of resources which aim to maximise the autonomy of the individuals who may not have full legal or decision-making capacity. However, many countries have not reformed their systems in recent years and even where changes have been made, supported decision-making is still not widespread. Alzheimer Europe noted that the European Commission’s proposals on cross-border arrangements do not reflect a more rights-based approach and do not acknowledge the need for such systems to be UNCRPD compliant (for example, by including reference to supported decision-making). One of the key points which emerged from the Yearbook was the difficulty in applying the UNCRPD General Comment No.1, particularly its view that substitute decision-making is discriminatory and should be abolished. Specifically, this approach overlooks the progressive nature of conditions such as dementia and gives no consideration to the practical difficulties that arise where no mechanism exists to take decisions, should an individual not be able to do so themselves. Even in countries which have tiered levels of guardianship and/or supported decision-making articulated in its legislation, all recognise the importance of guardianship as a measure of last resort, where supported decision-making is no longer sufficient.
The Yearbook also contains testimonies from a number of past and present members of the European Working Group of People with Dementia (EWGPWD) and the European Dementia Carers Working Group (EDCWG). Members of both groups shared their experiences of making and/or using powers of attorney or guardianship in relation to their own diagnosis or that of a family member. These experiences illustrate the importance of ensuring that members of the public understand how legal capacity works within their country and that they discuss their future wishes with those close to them. Additionally, these experiences show that systems should ensure that processes do not unduly burden families and maximise the autonomy of individuals for as long as possible.
Taking these issues into account, the Yearbook contains a number of recommendations aimed at both national and European decision-makers, encouraging them to improve their systems of legal capacity and supported-decision making by:
• Dedicating programmes of work within European Social Fund Plus (ESF+) / the Cohesion Fund of the European Commission to support the development of resources and projects which implement systems of supported decision-making for persons with disabilities.
• Adopting and implementing the proposed Commission Regulation on cross-border situations and the Council Decision on the Hague Convention.
• Reforming laws relating to substitute decision-making, moving towards a system which prioritises supported decision-making, aligning to the combined supported decision-making model contained in Alzheimer Europe’s 2020 Ethics Report.
• Providing funding for the development of public-facing campaigns to raise awareness and understanding of powers of representation and encourage people to make these arrangements and/or advance directives, advising people where to go and whom to approach to get more information on the process.
The full report can be accessed on the website of Alzheimer Europe at: https://www.alzheimer-europe.org/resources/publications/dementia-europe-yearbook-2023-legal-capacity-and-supported-decision-making