• The objective of the “Yearbook 2023” is to provide an overview of the situation in Europe relating to legal capacity and supported decision-making.

 

• It compares the European and International rights-based treaties, such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) with what the current legislation is in countries across Europe.

 

• The Yearbook found that whilst progress is being made in some countries, legislation in most countries still does not include provisions to ensure that people are supported to make decisions for themselves.

 

• Additionally, the Yearbook highlighted some challenges of the difficulties of applying the UNCRPD, noting that event recent national legislation does not always comply.

 

• There are testimonies of people living with dementia and carers/supporters of people within the Yearbook, highlighting the importance of people being aware of this issue and discussing their wishes with those close to them.

 

• The Yearbook contains a number of recommendations for both European and national policy-makers to improve the situation in Europe.

 

Luxembourg, 31 January 2024 – Alzheimer Europe has today 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+) / theCohesion 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. Commenting on the publication of the report, Alzheimer Europe’s Executive Director, Jean Georges, stated:

“The subject of legal capacity and supported decision-making is a complex one, particularly in relation to progressive conditions like dementia. However, the European and international accords such as the Charter of Fundamental Rights, the UNCRPD and the Hague Convention all strongly emphasise the need for systems to support the person to be able to exercise their rights as far as possible and to ensure a person’s wishes are respected, even where they cannot act on their own behalf.

The picture painted by the Yearbook is one of some progress made in the development and implementation of policy and legislation. Ireland’s reforms to its legal capacity legislation, embedding supported decision-making as a concept within law, has been one of the most high-profile developments in this area in recent years. Whilst Irish legislation is the most explicit about the concept, it is encouraging to see similar principles being embedded in legislation elsewhere, especially in countries which have introduced new legislation in recent years.

 

More remains to be done to ensure that the legal capacity of persons with dementia is respected across Europe. National governments must reform their legislation where it does not embed the principles of supported decision-making, whilst also raising awareness amongst the public about the importance of making provisions, such as powers of representation, to ensure that their wishes are known and respected, should the case arise.

 

Whilst this issue primarily falls under the responsibility of national governments, the EU can support this work, including through the implementation of its current proposals in relation to cross-border situations, as well as identifying good practices and supporting Member Statesto implement these, to support upholding the legal capacity of people living with dementia.”

 

The full report can be accessed on the website of Alzheimer Europe at:

https://bit.ly/AE2023Yearbook

 

For further information, contact: Jean Georges, Executive Director, Alzheimer Europe, 14, rue Dicks, L-1417 Luxembourg, Tel.: +352-29 79 70, Fax: +352-29 79 72, jean.georges@alzheimer-europe.org,

www.alzheimer-europe.org

 

Notes to editors: Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 41 member organisations in 36 European countries. The mission statement of the organisation is to change perceptions, practice and policy to ensure equal access of people with dementia to a high level of care services and treatment options.

The 2023 Dementia in Europe Yearbook received funding under an operating grant from the Citizens, Equality, Rights and Values programme. The views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Commission.

Neither the European Union nor the granting authority can be held responsible for them.

In early 2023, Alzheimer Europe surveyed its members, asking about the policies and legislation in their countries, as well as gathering good practice examples. In particular, the survey sought to understand the extent to which current policy and legislation reflected the obligations under different European and International accords on legal capacity and supported decision-making. A total of 26 responses were

received.