What was the aim of this study?
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. This study followed the methods of the James Lind Alliance, a non-profit organization based in England.
What did this study find?
Priority 1: Addressing stigma
What is the impact of stigmas associated with dementia and mental health issues on persons with dementia and their families? What are effective ways of reducing the stigma experienced by persons with dementia and their friends, family and caregivers/care partners?
Priority 2: Emotional well-being
What can be done to support emotional well-being, including maintaining a sense of dignity, for persons with dementia?
Priority 3: Impact of early treatment
Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
Priority 4: Health system capacity
How can the health system build and sustain the capacity to meet the health and social care needs of persons with dementia and their friend or family caregivers/care partners?
Priority 5: Caregiver support
What services, supports and therapies for friends or family caregivers/care partners of persons with dementia would improve or maintain health, well-being and quality of life for persons with dementia and their friends or family caregivers/care partners?
Priority 6: Access to information and services post-diagnosis
After dementia is diagnosed, what would help persons with dementia and their friends, family and caregivers/care partners get the information, treatment, care and services they may need?
Priority 7: Care provider education
What dementia-related skills and knowledge should health and social care providers have? What are effective ways of providing them with these skills and this knowledge? How can the number of health and social care providers who have these skills and this knowledge be increased?
Priority 8: Dementia-friendly communities
What enables the creation of dementia-friendly communities? What impact do dementia-friendly initiatives have on persons with dementia and their friends, families and caregivers/care partners?
Priority 9: Implementation of best practices for care
What would ensure implementation and sustainability of best practices for dementia care within and across health care settings, including effective approaches to providing person-centred care?
Priority 10: Non-drug approaches to managing symptoms
Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on behavioural and psychological symptoms of dementia? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments for managing behavioural and psychological symptoms of dementia?
What was done with the results?
The results of this study helped 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 led this study?
The study is overseen by a Steering Group (see Steering Group, below) made up of people affected by dementia, either personally or through their work, including representatives from the Alzheimer Society.
How was the Alzheimer Society involved?
This study is funded by the Alzheimer Society of Canada. The Alzheimer Society is also one of the partner organizations (see Partner organizations, below) in the study, helping to promote the questionnaire to people affected by dementia across the country.
Partners and supporters of this study
Steering group membership
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, former 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
(Listed in alphabetical order.)
- 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 Consortium for Neurodegeneration in Aging
- 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
More useful links and resources
Report of the Canadian Dementia Priority Setting Partnership. Canadian Dementia Priority Setting Partnership, July 2017. Funded by the Alzheimer Society of Canada, this report aimed to identify priority areas for Canadian dementia researchers and research funding organizations. The result of this study identified 10 dementia priorities according to Canadians affected by dementia.
The James Lind Alliance. This non-profit initiative aims to brings patients, caregivers and clinicians together to identify and prioritize the top 10 unanswered questions that surround research on a particular topic.
The Toronto Rehabilitation Institute. The Toronto Rehabilitation Institute helps people overcome the challenges of disabling injury, illness or age-related health conditions to live active, healthier and more independent lives.