Patient and Public Involvement in Identifying Dementia Research Priorities.

Abstract

To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia. The Canadian Dementia Priority Setting Partnership (PSP) followed James Lind Alliance PSP methods. Results were compared with the World Health Organization research prioritization exercise and the United Kingdom Dementia PSP. Canada. In the first survey, 1,217 individuals and groups from across Canada submitted their questions about dementia. 249 participated in the interim prioritization. For the final prioritization workshop, the 28 participants included persons with dementia, friends, family, caregivers, health and social care providers, Alzheimer Society representatives, and members of an organization representing long-term care home residents. The Canadian Dementia PSP top 10 priorities relate to health, quality of life, societal issues, and dementia care. Five priorities overlap with one or both of the other two prioritization initiatives. These results provide researchers and research funding agencies with topics that individuals with personal or professional experience of dementia prioritize, but they are not intended to preclude research into other aspects of dementia.