Challenges for participatory research strategies and approaches in Alzheimer's disease

Objective: Alzheimer's Disease (AD) as a disabling condition and public health concern has been received increasing attention from policymakers and researchers. The study aims at determining the role of participatory research methods in AD. Usually, participatory research approaches are understood as an empowerment process, involving persons or groups who are the ‘target groups' in specific research fields. However, also basic objections are raised against this equation. Method: The study used three principal methods, (a) semi-structured in-depth interviews with 24 representatives of patient organisations and researchers in the US and Europe; (b) a rapid review of the scientific literature on participatory research and AD using MEDLINE, PUBMED, CINAHL, PSYCINFO, SOCIOFILE and AGELINE., limited to the past 10 years; (c) an examination of the grey literature on participatory research approaches in Alzheimer's disease research. Results: The question what participation is and how it can be achieved, was perceived as being critically linked to the ability to make reasonable decisions. Interview participants raised doubts whether mere involvement entails ‘real' and ‘meaningful' participation of individuals with AD, and observed that participation is primarily focused on carers. The literature review (63 publications) revealed that few participatory research strategies have been tested. Conclusions: The presuppositions for participatory research designs have to be reconsidered. Questions of power relations, the value of lived experience and the necessity of using other modes of communication shape the agenda for rethinking participation of Alzheimer's patients in research settings.