Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean; Moniz-Cook, Esme; Mountain, Gail; Chattat, Rabih; Øksnebjerg, Laila

Abstract

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures - Charting New Territory’.

Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

Citation

Gove, D., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, G., Chattat, R., & Øksnebjerg, L. (2018). Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging and Mental Health, 22(6), 723-729. https://doi.org/10.1080/13607863.2017.1317334

• Journal Article Type: Article
• Acceptance Date: Apr 2, 2017
• Online Publication Date: May 17, 2017
• Publication Date: 2018
• Deposit Date: Jan 8, 2018
• Publicly Available Date: Jan 8, 2018
• Journal: Aging & Mental Health
• Print ISSN: 1360-7863
• Publisher: Routledge
• Peer Reviewed: Peer Reviewed
• Volume: 22
• Issue: 6
• Pages: 723-729
• DOI: https://doi.org/10.1080/13607863.2017.1317334
• Keywords: Phychiatric Mental Health; Gerontology; Geriatrics and Gerontology; Psychiatry and Mental health
• Public URL: https://hull-repository.worktribe.com/output/515898
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/13607863.2017.1317334
• Additional Information: Peer Review Statement: The publishing and review policy for this title is described in its Aims & Scope.; Aim & Scope: http://www.tandfonline.com/action/journalInformation?show=aimsScope&journalCode=camh20
• Contract Date: May 18, 2017