Dr. Jennifer Bethell and Dr. Katherine McGilton
Dr. Jennifer Bethell, (L) post-doctoral research fellow, Toronto Rehab, and Dr. Katherine McGilton, Senior Scientist, Toronto Rehab, co-led the project to determine the dementia research priorities. (Photos: UHN)

Toronto Rehab researchers helped lead the creation of Canada's top 10 dementia research priorities taking input from more than 1,200 people including those living with dementia, friends and family, caregivers, clinicians and advocates.

The Canadian Dementia Priority Setting Partnership was created through collaboration between the Alzheimer Society of Canada, Canadian Consortium on Neurodegeneration in Aging, the University Health Network, the James Lind Alliance and partner organisations across Canada.

The consultation process was co-led by Dr. Katherine McGilton, Senior Scientist, Toronto Rehab, and Dr. Jennifer Bethell, post-doctoral research fellow, Toronto Rehab.

"A key mandate of this initiative was to find out what people who have a personal connection to the disease would like to see researched," Dr. Bethell explained.

Added Dr. McGilton: "People living with dementia were keen to be involved."

The Partnership asked Canadians affected by dementia – either personally or through their work—for their unanswered questions about living with dementia, and dementia prevention, treatment and diagnosis. The responses were then prioritized through a two-stage process.

The priorities will be presented in a formal report that will go to partner organizations and research funders across Canada.

These were found to be the top 10 Canadian dementia research priorities:

  1. 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?
  2. What can be done to support emotional well-being, including maintaining a sense of dignity, for persons with dementia?
  3. Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
  4. How can the healthcare 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?
  5. What services, supports and therapies for friend 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?
  6. 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?
  7. 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?
  8. 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?
  9. 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?
  10. 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?

The Canadian Dementia Priority Setting Partnership was funded by the Alzheimer Society Research Program as part of the Alzheimer Society's commitment to the Canadian Consortium on Neurodegeneration in Aging.​

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