The Canadian Dementia Priority Setting Partnership study
Research is vital to finding better ways to prevent, diagnose and treat dementia and improve the quality of life of those affected by it. A recent study by the Canadian Dementia Priority Setting Partnership aims to identify priority areas for Canadian dementia researchers and research funding organizations.
Why is this study important?
We need better ways to prevent dementia and improve the health and quality of life of people living with dementia. Research is vital to achieving these goals. This study brings the voices of Canadians affected by dementia into the conversation about dementia research in Canada.
What will this study do?
This study asks Canadians affected by dementia about what they believe are the important research questions related to living with dementia as well as dementia prevention, treatment and diagnosis. The research questions identified by you and others completing this questionnaire will be prioritized to produce the “top ten” Canadian dementia research priorities. This study and the accompanying questionnaire follow the methods of the James Lind Alliance, a non-profit organization based in England.
What will be done with the results?
The results of this study will help plan future research priorities for the Alzheimer Society Research Program (ASRP). The research priorities identified in this study will also be shared with researchers and other research funding organisations so that they can address what matters most to Canadians affected by dementia.
Who is leading this study?
The team responsible for carrying out this study is based at the Toronto Rehabilitation Institute – University Health Network. The study is overseen by a Steering Group made up of people affected by dementia, either personally or through their work, including representatives from the Alzheimer Society.
How is the Alzheimer Society involved?
This study is funded by the Alzheimer Society of Canada. The Alzheimer Society is also one of the partner organizations in the study, helping to promote the questionnaire to people affected by dementia across the country.
What stage is the study at?
With the help of our partner organizations, from May to August 2016, we heard from over 1,000 Canadians from across the country about their priorities for dementia research. We are now analyzing the data and plan to begin the prioritization process in late 2016. For those who participated in the questionnaire and indicated they would like to be involved in this next phase of the project, we will be in touch with you then – but please contact Jennifer Bethell (details below) if you have any questions in the meantime.
How can I get more information?
To find out more, contact the study office by telephone, email or in writing:
Dr. Jennifer Bethell
Toronto Rehabilitation Institute -
University Health Network
Bickle Centre (Research), 130 Dunn Ave
Toronto, ON M6K 2R8
Telephone: (416) 597-3422 ext. 2158
Chair: Dorothy Pringle, Professor Emerita, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
- Mohammad Ul-Alam, Personal support worker/Care Aide, Bethany Care Society
- Joan Bullivant-Wallace, Family caregiver & advocate
- Larry W. Chambers, Scientific Advisor, Alzheimer Society of Canada
- Carole Cohen, Geriatric psychiatrist, Sunnybrook Health Sciences Centre
- Katherine Cowan, James Lind Alliance (UK)
- Phyllis Fehr, Ontario Dementia Advisory Group
- Miranda Ferrier, President, Ontario Personal Support Worker Association & Canadian Support Worker Association
- Andreas Laupacis, Physician, Li Ka Shing Knowledge Institute, St. Michael’s Hospital
- Chris Ragonetti, long-term care physician
- Nancy Rushford, Alzheimer Society of Ontario
- Eveline Sabourin, Winnipeg Regional Health Authority
- Kathleen Scott, Vice President, Ontario Personal Support Worker Association & Canadian Support Worker Association
- Paula Szeto, Occupational therapist, Toronto Rehabilitation Institute – University Health Network
- Katherine McGilton, Principal investigator & Senior scientist, Toronto Rehabilitation Institute – University Health Network
- Jennifer Bethell, Postdoctoral research fellow, Toronto Rehabilitation Institute – University Health Network
- Alberta Continuing Care Association
- Alzheimer Society of Canada
- Alzheimer Society of Alberta and Northwest Territories
- Alzheimer Society of B.C.
- Alzheimer Society of Manitoba
- Alzheimer Society of New Brunswick
- Alzheimer Society of Newfoundland and Labrador
- Alzheimer Society of Nova Scotia
- Alzheimer Society of Ontario
- Alzheimer Society of Prince Edward Island
- Alzheimer Society of Saskatchewan
- Canadian Academy of Geriatric Psychiatry
- Canadian Association of Occupational Therapists
- Canadian Association of Social Workers
- Canadian Geriatrics Society
- Canadian Gerontological Nursing Association
- Canadian Home Care Association
- Canadian Hospice Palliative Care Association
- Canadian Neurological Society
- Canadian Society of Consultant Pharmacists
- Canadian Society of Palliative Care Physicians
- Canadian Support Workers Association
- Canadian Therapeutic Recreation Association
- Family Councils Ontario
- Federation of Quebec Alzheimer Societies
- Huntington Society of Canada
- Ontario Association of Non-Profit Homes and Services for Seniors
- Ontario Association of Residents' Councils
- Ontario Dementia Advisory Group
- Ontario Long Term Care Association
- Ontario Personal Support Worker Association
- Parkinson Canada
- Speech-Language and Audiology Canada
- Students Against Alzheimer’s University of Toronto
Last Updated: 08/11/16
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