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2020 Ethical issues linked to legal capacity and decision making (full report)

This report is about ethical issues surrounding legal capacity insofar as these relate to the lives and wellbeing of people with dementia. Having legal capacity means being considered as a subject before the law. It also means having certain rights (including human rights) and having the opportunity to exercise those rights, albeit with appropriate support if needed, that is acceptable and freely chosen. Over the years, Alzheimer Europe has explored ethical issues in relation to key topics affecting the lives and wellbeing of people with dementia such as assistive technology, restrictions of freedom, disability, inclusive research and the way that dementia is perceived and portrayed. It has also looked at different legal provisions of relevance to some of those topics (e.g. laws on mental capacity, guardianship, involuntary internment, marriage, voting, healthcare and participation in research). This report reflects on the relationship between law and ethics with regard to decision making in key areas of the lives of people with dementia. It will also touch on a wide range of topics such as disability, equity, wellbeing, respect for autonomy and dignity, human rights and quality of life.

It is generally assumed that law is morally justified. Law not only defines the obligations and rights that people have (along with any relevant exceptions), but also implicitly or explicitly claims that this established order is morally right (i.e. this is what ought or ought not happen). Failing to observe law or respect people’s legal rights would in many cases not only be illegal but also unethical and immoral. It would, for example, be illegal but also immoral to marry someone against their will, to move into someone else’s house without their permission, to force someone to move into a care home or to dictate to them how they should or should not spend their money. This is, amongst other things, because acting in this way would fail to respect personal autonomy, integrity, personhood and privacy, and would run counter to the principles of beneficence and non-maleficence (doing what is good for a person and not something that is harmful to them). Following the law does not, however, exempt people from the necessity to reflect on whether their behaviour is morally justified. In a recent statement, made in reaction to the shooting of an African American in Atlanta and as part of her resignation speech, the police chief stated,

“…I firmly believe that there is a clear distinction between what you can do and what you should do” (BBC 2020, 14/6).

Similarly, morality and law is not a mere duplication. As Gardner points out, law

“enable[s] us to do, or to do better, what morally we already have reason to do. Yet it does not merely duplicate morality’s existing content. Morality already told us what to do, but law added, by its authority, a suitable way to do it”

“Often law is gappy and needs morality’s help to make it less so” (Gardner 2013, p.422).

Legislation and guidelines at national and European level may determine and provide guidance on how to protect and promote people’s rights and how to behave ethically towards each other. This emphasises the importance of distinguishing between law and ethics despite the close relationship between the two. Particular attention is often paid to members of society who are potentially vulnerable (e.g. people with dementia). The following list provides examples of some of the key European and international conventions, directives, charters and codes which lay out some of the common values and principles of relevance to the issue of legal capacity in general and in relation to people with dementia.

  • the Charter of Fundamental Rights of the European Union (2012)[1]
  • The International Council of Nurses (ICN). Code of Ethics for Nurses, Geneva: Switzerland (2012, revised version)
  • the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006)[2]
  • the Committee of Ministers to Member States Recommendation No. R (99) 4 on Principles concerning the Legal Protection of Incapable Adults (1999)[3]
  • the Convention on Human Rights and Biomedicine (1997)[4]
  • the International Covenant on Civil and Political Rights (1976)[5]
  • the World Medical Association Declaration of Helsinki (1964)[6]
  • the European Social Charter (1961, 1996)
  • The Nuremberg Code (1947)

These and other documents provide valuable guidance which inevitably influences reflection and subsequent action related to the recognition of and respect for people’s legal capacity. However, actual legislation as well as practices, attitudes and procedures within and between countries in Europe differ and are evolving at different paces and in different ways. These documents touch on ethical and legal issues but there are also considerable differences with regard to the objectives and attitudes of lawyers and philosophers. They may address the same issues and use the same terminology but sometimes mean different things and draw different conclusions. Van der Burg (2010, p.20) describes this as follows:

“A connected difference is that law is oriented towards a closure. Legal procedures are designed to reduce the complexity of the conflict, to restrict, neutralise, and end it. This focus on a peaceable closure is an attitude that many lawyers have internalised, whereas for ethicists it often seems the reverse. Philosophical discussions may continue endlessly, until one of the parties no longer bothers to respond, or has died.

The basic attitude of many philosophers seems to be to add new complexities, hypothetical cases, and relevant dimensions. In too simple words: after one has consulted a lawyer, the problem may seem simpler because the lawyer has focused on only a few relevant aspects; after a philosopher has been consulted, the problem will only seem more complex.”

The above differences are quite clear in discussions about ethical issues linked to legal capacity in the CRPD, which are quite central to this report. After this introduction, the report is divided into two sections. The first addresses some of the key concepts of relevance to the overall topic of legal capacity, with a focus on ethical issues of relevance to people with dementia.  The second reflects on some of the key areas where restrictions of legal capacity have an impact on the lives of people with dementia (e.g. guardianship, treatment and care, freedom of movement and participation in civil and political life). 

This report was drafted by the ethics working group, which was set up by Alzheimer Europe in 2020 to explore legal capacity and dementia, drawing on the expertise and experience of the different members of the group. Because of the COVID-19 pandemic, the group had to operate virtually but still managed to address a broad range of issues and perspectives, and arrive at a consensus on the different positions reflected in the document. A short bio and photo of each member of the ethics working group can be found in Appendix 1.

The aims of this document are:

  • to raise awareness about situations and practices surrounding legal capacity,
  • to highlight grey zones and controversial issues linked to these and in relation to human rights and ethics, and
  • to make recommendations to ensure that the rights and wellbeing of people with dementia are respected and promoted.

The main target audience of this report is health and social care professionals, lawyers and legal representatives (i.e. all those who may at some point may play a role in decisions related to the exercise and/or loss of legal capacity of people with dementia).

A shorter report, for a broader audience, has also been prepared and can be accessed here.









Last Updated: Tuesday 09 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