Involving people with dementia in dementia research: principles, challenges and practical examples

Abstract

AbstractBackgroundAlzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of Public Involvement (PI), by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities.MethodTo achieve this, in 2012, Alzheimer Europe set up the European Working Group of People with Dementia (EWGPWD). The group is currently composed of 15 men and women living with different types of dementia and from different European countries. Members of the EWGPWD provide advice and feedback to all activities of the organisation and are involved in several European projects in the context of PI.ResultAlzheimer Europe has published a number of peer‐reviewed articles and reports on the topic of PI in dementia research carried out by members of the EWGPWD. Some of these articles were co‐authored by members of the EWGPWD.ConclusionDuring the session, we will provide an overview of (i) the context in which the EWGPWD was set up a decade ago, (ii) our approach to PI and how it has evolved overtime to adapt to new situations (e.g. in the context of the COVID pandemic), (iii) the main lessons we have learnt and what works well to ensure a meaningful contribution of members and promote respect and wellbeing, and (iv) some of the challenges we are still working on (e.g. diversity and understanding impact). We will also present some practical examples of the PI activities which we have organised in different European projects and the impact that this had for the project. The session will be jointly facilitated by a member of Alzheimer Europe and a person with dementia (i.e. a member of the EWGPWD).