On 1 December, Alzheimer Europe hosted an online workshop as part of its 2020 Alzheimer’s Association Academy (AAA). Chaired by Dianne Gove, Director for Projects at Alzheimer Europe (AE), the online workshop was entitled “Legal capacity and decision-making”. The workshop included four presentations and was attended by representatives from national Alzheimer’s associations, pharmaceutical companies and the European Working Group of People with Dementia.
Dianne Gove kicked off the workshop by describing the concept of legal capacity and the relationship between law and ethics, and outlined some of the recent work carried out by Alzheimer Europe’s Ethics Working Group, which is focusing this year on ethical issues related to legal capacity and decision making. Next, Matthé Scholten of Ruhr University Bochum (in Germany) delivered a presentation entitled “Legal capacity, dementia and the Convention on the Rights of Persons with Disabilities”. In his talk, Matthé addressed the concept of competence, discussing how competence can fluctuate as a function of time and depending on the task at hand. He described different decision-making models, such as the competence model, the radical CRPD model and the combined supported decision-making model, arguing in favour of the latter as an ethical approach to legal capacity and decision making for people with dementia. Catherine Quinn of the University of Bradford (United Kingdom) was the third speaker in the workshop, discussing how capacity is addressed in dementia research being carried out in England in accordance with guidance provided by the Mental Capacity Act. Drawing on her experience as a clinical trial manager and co-investigator, Catherine discussed the challenges of assessing capacity in dementia research, as well as practical issues around consent forms and patient information sheets. The final speaker of the workshop was Maria do Rosário Zincke dos Reis, Board member at Alzheimer Portugal and Alzheimer Europe. Drawing on her legal background, Rosário described recent developments in Portugal that have resulted in the creation of a new framework to regulate the legal capacity of adults who, due to disability, health or behavioural issues are not able to fully exercise their rights. She explored the extent to which these recent changes comply with the requirements of the CRPD.
The presentations were followed by an interactive discussion during which questions from the audience were addressed by the panel, including remote options for informed consent, the implications of the 5-year revision requirement in Portuguese law, how capacity legislation addresses incapacity due to behavioural problems and the nature of shared decision making.
