TY - JOUR
T1 - Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)
AU - Gove, Dianne
AU - Diaz-Ponce, Ana
AU - Georges, Jean
AU - Moniz-Cook, Esme
AU - Mountain, Gail
AU - Chattat, Rabih
AU - Øksnebjerg, Laila
AU - European Working Group of People with Dementia
PY - 2018/5
Y1 - 2018/5
N2 - 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.
AB - 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.
KW - Journal Article
U2 - 10.1080/13607863.2017.1317334
DO - 10.1080/13607863.2017.1317334
M3 - Journal article
C2 - 28513210
SN - 1360-7863
VL - 22
SP - 723
EP - 729
JO - Aging and Mental Health
JF - Aging and Mental Health
IS - 6
ER -