Jennifer Bethell1, Dorothy Pringle2, Larry W Chambers3,4,5,6,7, Carole Cohen8,9, Elana Commisso1, Katherine Cowan10, Phyllis Fehr11,12, Andreas Laupacis13,14,15, Paula Szeto1, Katherine S McGilton1,2. 1. Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada. 2. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada. 3. Alzheimer Society of Canada, Toronto, Ontario, Canada. 4. Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada. 5. Bruyère Research Institute, Ottawa, Ontario, Canada. 6. Health, Nursing and Environmental Studies, Faculty of Health, York University, Toronto, Ontario, Canada. 7. Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada. 8. Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. 9. Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada. 10. James Lind Alliance, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, University of Southampton, Southampton, United Kingdom. 11. Ontario Dementia Advisory Group, Ontario, Canada. 12. Dementia Alliance International, Ankeny, Iowa. 13. Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Ontario, Canada. 14. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. 15. Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Abstract
OBJECTIVES: 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. DESIGN: 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. SETTING: Canada. PARTICIPANTS: 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. RESULTS: 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. CONCLUSION: 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.
OBJECTIVES: 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. DESIGN: 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. SETTING: Canada. PARTICIPANTS: 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. RESULTS: 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. CONCLUSION: 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.
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