Legal capacity refers to the right that individuals have to make decisions for themselves within the constraints of the law – and which must then be recognised as being legal. Legal capacity and decision-making are important topics in the dementia field, as they affect the wellbeing and autonomy of people with dementia. At our November Alzheimer’s Association Academy meeting, four experts shared recent reviews, advances and initiatives addressing legal capacity and decision-making with colleagues from our member organisations. The meeting was moderated by Ana Diaz, Public Involvement Lead at Alzheimer Europe, who co-developed our 2016 Yearbook on legal capacity and decision-making.
The first speaker at the Academy meeting was our Policy Officer, Owen Miller. Owen has spent the last year working on an update to our 2016 Yearbook, which will be published in the coming weeks. The 2023 Yearbook reviews European, national and international legislation on legal capacity and decision-making, describing how different policies and strategies address aspects such as testamentary capacity, civil responsibility, consent for medical treatment and research, powers of attorney and substitute/supported decisionmaking. In his talk, Owen provided a detailed overview of the Yearbook, noting that while there are some commonalities in countries across Europe (e.g. limiting the ability to marry to those who have legal or decision-making capacity), certain countries are more progressive when it comes to laws regarding proxies or guardianship. There is still a lot more work needed to ensure the rights of people with dementia are respected, Owen explained, describing the key recommendations from the Yearbook. These include specific calls to action, such as the reform of laws that deny some people with dementia the right to vote, as well as the need for training and resources for supported decision-making.
Next, Lenka Vysoka (European Commission) spoke about new proposals for reform of cross-border arrangements for adults in need of support. These draft proposals from the European Commission are particularly relevant in situations where caregivers, families or friends of people with dementia live in different countries, and were developed in response to the growing number of people in need of support on cross-border issues. Lenka explained that 27.4 million adults in Europe are in situations of vulnerability, and that between 150,000-780,000 of them are at risk of cross-border issues. The 2000 Hague Convention on the Protection of Adults entered into force in 2009, she said, but compliance is slow and only 12 EU countries are contracting parties to the Convention. One of the aims of the proposals is to oblige Member States to sign, ratify and accede to the Convention, providing greater clarity and harmonisation on applicable laws and recognition of measures, as well as improved cooperation among competent authorities. Harmonisation also extends to registers of vulnerable persons, enabling data sharing between countries and competent authorities to increase the assurance of protection and respect of measures whilst abroad.
The third speaker, Adrian Ward (European Law Institute/ELI), gave a presentation of a newly-launched ELI project on decision-making, which is focusing on advance choices for future disablement. The term “advance choices” over “advance directives” was carefully chosen, hoping to prompt a shift from the mental health focus of advance directives, to a more holistic model of recording preferences and wishes, rather than instructions. The ELI project aims to develop model laws with practical guidance, with a view to encouraging the adoption of advance choices and supporting people in making use of them. Adrian spoke about the potential value of advance choices in the context of dementia, which can help provide support for peoples’ right to autonomy and self-determination. In doing so, he explained, people with dementia, their families and carers would have greater clarity and reassurance about their rights being respected now, and in the future.
The final speaker of the Alzheimer’s Association Academy meeting was Aine Flynn, Director of the Decision Support Service (Mental Health Commission, Ireland). Aine’s presentation on the adaptation of Irish legislation to the requirements of the UN Convention for the Rights of People with Disabilities (UNCRPD) provided a valuable case study in the national context, compared to the EU context that was discussed by Adrian and Lenka. Aine explained that an overhaul to the Irish legislation was long overdue, with the Marriage of Lunatics Act dating back to 1811, and the Lunacy Regulation dating back to 1871. These statutory arrangements were blunt instruments, aiming to protect people lacking capacity, but infringing on their human rights. She then outlined the new reforms that were implemented in 2022, noting that there is now a presumption of capacity and that people must be supported in making their own decisions as far as possible, maintaining their dignity and autonomy. These reforms are operationalised through a new Decision Support Service, Aine explained, which provides a three-tier framework for supported decision-making, ranging from a decision-making assistant (appointed by the patient as a supporter, with no power to make decisions on behalf of the patient), to a co-decision maker and, at the highest level of support, a decision-making representative (appointed through Court application, for a limited time and with a limited scope).
