The second meeting of Alzheimer Europe’s working group on ethical challenges affecting the involvement of people with dementia in research was held on 23 October in The Hague. The working group, which was chaired by Dianne Gove, brought together experts from Belgium, the Netherlands, Luxembourg, Italy, the United Kingdom and Sweden.
During the day, members of the working group participating in this meeting (Saloua Berdai Chaouni, Ann Claeys, Krista Tromp, Jenniffer van den Broeke, Corinna Porteri, Mohammed Akhlak Rauf, Karen Watchman and Ingrid Hellström) went through the latest draft and debated key issues on the topic of “overcoming ethical challenges affecting the involvement of people with dementia in research”, in the context of Public and Patient Involvement (PPI) and as research participants. The emphasis was on inclusive research, on understanding multiple and intersecting characteristics/identities and on challenging barriers to the involvement of a diverse group of people with dementia in research.
The final report, which will be a discussion paper containing recommendations, will be targeted at researchers, funders and ethics committees and will be available at the beginning of next year (2020).
