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

It is important to be attentive to the needs and wishes of people with dementia in order to ensure that they are enabled to participate in society on an equal basis with other citizens in all areas of life. This includes recognising everyone’s dignity and personhood, along with their hopes, fears and preferences. Legal capacity is not only about the right to make decisions about one’s own life but about having the opportunity to exercise that right (e.g. not only having the right to vote but also to receive information about the different candidates and to be able to get to the polling station on election day or to post one’s vote). It covers key decisions in life such as where to live, managing personal finances and informed consent to medical treatment but also seemingly minor issues and freedoms such as going out for a walk, making oneself a cup of tea or coffee, buying someone a present or going on holiday. Sometimes little decisions can have an important impact on people’s well-being and quality of life. They are also ways of expressing who we are and hence fundamental to our sense of self and identity.

In some situations, people with dementia may be unable to make a particular decision, even with all possible support, and there must be practices and procedures in place to ensure that substitute decision-making is available and just. Such practices and procedures must be carefully designed and closely monitored to ensure that they are both legal and ethical. It is essential to work towards an inclusive society in which people with dementia are supported as much as possible to exercise their legal capacity, based on initial assumptions that this is possible with appropriate support and reasonable accommodations and better support for people involved in combined supported decision making.

Stereotypes and paternalistic attitudes often lead to practices which interfere with people’s formal and informal legal capacity. Members of society need to work together to remove obstacles, whether they be legal or based on mentalities, traditions or taken-for-granted limiting assumptions (e.g. that’s just the way it is done, it has always been like that etc.). This is a task for everyone not just for lawmakers, policy makers, health and social care professionals and notaries. Not everyone has the power to bring about changes directly, but everyone has the power to raise issues and challenge practices, procedures and attitudes. We hope that this report has been successful in raising awareness about the many issues related to legal capacity and decision making in the context of dementia.



Last Updated: Thursday 11 February 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