On 7 July 2026, Alzheimer Europe held a session of its online workshop series the Alzheimer's Association Academy, entitled "Dementia as a disability”.
Our Academies are a popular series of online capacity-building workshops bringing together representatives of national Alzheimer’s associations with members of the European Working Group of People with Dementia (EWGPWD) and European Dementia Carers Working Group (EDCWG), as well as representatives from pharmaceutical companies, to learn about dementia advocacy, care, policy, research and treatment.
Dianne Gove, Director for Public Involvement and Ethics at Alzheimer Europe chaired the session, welcoming close to 50 participants from 13 countries and three companies (Bristol Myers Squibb, Lilly and Roche), as well as several members of staff from Alzheimer Europe.
Speakers at the Academy of 7 July included:
Kevin Quaid, current Chairperson of the European Working Group of People with Dementia (EWGPWD), who delivered a personal account of his experiences of having dementia as a disability and shared a very moving poem which he wrote about the impact that Lewy Body Dementia has had on his life.
Dr Paula Jacobs Research Fellow in Social Work at the University of Stirling and the University of Edinburgh (Scotland, UK), who was unable to attend the session live, but shared a video presentation focusing on the work she has done together with Professor Karen Watchman and Professor Heather Wilkinson, on the topic of people with intellectual disabilities and dementia.
Haydn Hammersley, Social Policy Coordinator at the European Disability Forum (EDF), who discussed EDF's reaction to the report “Enhancing the Strategy for the rights of persons with disabilities up to 2030” which was published by the European Commission in May of this year. The EDF notes that the report’s focus on new legislation is too weak and makes no real commitment, but that the revision of existing legislation is promising despite too much focus on non-binding measures.
Owen Miller, Policy Officer at Alzheimer Europe, who shared our perspective on proxy decision making and institutionalisation in the context of disability policy and dementia. He highlighted the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) perspective, noting some of the strengths of, and caveats to, the UNCRPD. He also shared Alzheimer Europe’s position on de-institutionalisation and on substitute/supported decision-making.
Following each of these engaging and insightful presentations, there was an opportunity for the audience to ask questions.
We trust that our Academy delegates enjoyed this online event and we would like to say a huge thank you to all our speakers and to our Gold and Silver sponsors, Bristol Myers Squibb, Eisai, Eli Lilly and Company, Johnson & Johnson, and Roche as well as to the European Union’s Citizen’s, Equalities, Rights and Values (CERV) programme, without whom our Academy sessions would not be possible.
