Top 10 research priorities
Over the course of the past year, Dre Katherine McGilton and Dre Jennifer Bethell from the University of Toronto asked Canadians affected by dementia—either personally or through their work—for their unanswered questions about living with dementia, dementia prevention, treatment and diagnosis. This study, also known as the Canadian Dementia Priority Setting Partnership, set out to identify the top 10 dementia research priorities, and to share them with Canadian researchers and research funding organizations.
Picture 1: Discussion group participants Picture 2: Dr Nouha Ben Gaied and Suzanne Bourget
Over 1200 participants shared their insights, thousands of questions were submitted and the shortlist was debated at an in-person workshop, held in Toronto on June 8-9, 2017.
The workshop brought together 28 participants from across Canada—persons with dementia, caregivers, health and social care providers and members of Alzheimer Societies.
Participants worked in small teams and as a group to discuss each question and decide what matters most to them.
The Federation was represented by Dr Nouha Ben Gaied, director research and development and Mrs Suzanne Bourget from the Alzheimer Society of Gaspesie Iles-de-la-Madeleine.
Here are the top 10 dementia research priorities:
- 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?
- What can be done to support emotional wellbeing, including maintaining a sense of dignity, for persons with dementia?
- Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
- 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?
- What services, supports and therapies for friend or family caregivers/care partners of persons with dementia would improve or maintain health, wellbeing and quality of life for persons with dementia and their friends or family caregivers/care partners?
- 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?
- 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?
- 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?
- 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?
- 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 Alzheimer Society Research Program will use these results to help bring the voices of Canadians affected by dementia into the research agenda. These priorities will also be shared with researchers and other research-funding organizations in hopes of stimulating more research in these areas.
Special thanks to our Steering Group and partner organizations for their involvement and assistance in the study
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 (CCNA).