Dementia as a disability? Implications for ethics, policy and practice – A discussion paper

In 2017, AE set out to explore the possible implications for ethics, policy and practice of accepting dementia as a disability. Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) states, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This clearly applies to the situation and experience of many people with dementia. With this in mind, AE has published a new discussion paper, which explores the possible implications for ethics, policy and practice of recognising dementia as a disability.

It was extremely important for AE to ensure that the experience and perspectives of people with dementia were included, in addition to the essential and valuable input from experts in the fields of disability, dementia, law, anthropology, psychology and policy. The entire EWGPWD was therefore involved right from the start, first by asking them about their perceptions of disability and dementia and then via a one-day face-to-face consultation and subsequent involvement in the development of an accessible version of the full report. Two members of the EWGPWD, Helen Rochford-Brennan and Helga Rohra, were also members of the AE expert ethics group chaired by Director for Projects Dianne Gove. The other members were June Andrews, Andrea Capstick, Carmel Geoghegan, Jean Georges, Sébastien Libert, Grainne McGettrick, Simo Vehmas and Toby Williamson. We are immensely grateful to both the EWGPWD and the expert ethics group for all their work on this discussion paper.

For further information about the discussion paper please contact Dr Dianne Gove, Director for Projects: dianne.gove@alzheimer-europe.org.
You can purchase both publications via the AE website: http://alzheimer-europe.org/Publications/E-Shop