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Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia

Alzheimer Europe has always been keen to promote the involvement of people with dementia in its work and consequently set up the European Working Group of People with Dementia in 2012. Over the years, the European Working Group of People with Dementia has been increasingly involved in research and in European projects. Alzheimer Europe realised the need for a proper structure and ethical approach. There is not a great deal of literature specifically about Public and Patient Involvement of people with dementia. Alzheimer Europe therefore engaged in Patient and Public Involvement activities with the European Working Group of People with Dementia with little guidance about the best way to do this. In 2017, following discussions with INTERDEM, it was agreed that Alzheimer Europe (in collaboration with INTERDEM) should perhaps develop its own position which could then be used and adapted by other researchers. It was considered very important to involve people with dementia and their carers from the very start. The members of the European Working Group of People with Dementia and their carers were ideally placed