This paper reflects Alzheimer Europe’s position on patient and public involvement (PPI) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. | Alzheimer Europe | Aging & Mental Health
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.
Topics covered in this paper include, 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.
Gove, D. et al. Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement) Aging & Mental Health Published online 17 May 2017