Bridging the gaps in dementia care through collaborative surveillance and data analysis
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In-depth data surveillance and analysis on care and supports for people living with dementia and caregivers uphold the vision and objectives of Canada’s national dementia strategy
CIHI and the Public Health Agency of Canada (PHAC) worked together to identify new metrics to better understand the health complexities and trajectories of people living with dementia.
CIHI product
Dementia in Canada
A Step Toward Understanding Health Care Trajectories of People Living With Dementia
Background
As Canada’s population ages, the number of people living with dementia is also expected to increase. This is creating additional demands for health systems across Canada, with potential impacts on the quality of care provided.
Caring for people living with dementia is complex. It is important to understand the needs of people living with dementia as well as the needs of their caregivers in order to provide the best care throughout the progression of the condition.
Your stress is constantly there, because you know that this is a very slow, degenerating illness and you know you could be doing this for another 10 years, 15 years. There’s no end in sight to the job you’re doing. We are now part of a caregiver support group, helping to support other caregivers navigate the complex care environment. — Wendy, Caregiver of people living with dementia
CIHI and PHAC have collaborated on 2 reports on this important health issue. Dementia in Canada was released in 2018 to provide a snapshot of this condition. Building on this initial report and to support the data and surveillance pillar of A Dementia Strategy for Canada: Together We Aspire, additional analyses of CIHI’s data holdings that focused on distinct health care settings and health equity factors resulted in the 2024 report A Step Toward Understanding Health Care Trajectories of People Living With Dementia.
To read these reports, go to the Related resources section.
The challenge
PHAC seeks to better understand how health complexities and trajectories of people living with dementia impact those living with the condition, caregivers and health care systems. Exploring the data and metrics that could answer these questions helps to identify best practices for care and service provision and to develop initiatives to share and promote their adoption.
The solution
To address the challenge, CIHI and PHAC collaborated on this issue and accomplished the following:
- Responding to a PHAC request, CIHI calculated 4 metrics that have been included in recent annual reports to Parliament on the national dementia strategy:
- Depression
- Pain
- Social Isolation
- Caregiver Distress
- Further collaboration resulted in CIHI’s release of A Step Toward Understanding Health Care Trajectories of People Living With Dementia in April 2024. The report was funded under PHAC’s Enhanced Dementia Surveillance Initiative.
To read these reports, go to the Related resources section.
The impact
New knowledge
By addressing key data gaps, the new report helps identify trends in the care of people living with dementia and helps support the implementation of the national dementia strategy.
Capacity-building
Additional data analysis provided to PHAC and members of the Ministerial Advisory Board on Dementia resulted in stronger evidence to inform decisions and fulfill their objectives around monitoring the goals of the national strategy.
Presentations of findings
- Federal/Provincial/Territorial Coordinating Committee on Dementia
- Ministerial Advisory Board on Dementia
- Australian Institute of Health and Welfare
- 2024 conferences hosted by the Canadian Public Health Association, Canadian Association of Health Services and Policy Research, and Canadian Association on Gerontology, and the North America Conference on Integrated Care
A need identified and addressed
Understanding health care trajectories of people living with dementia can support planning and service provision across care settings by providing information about the challenges and needs of people living with dementia and caregivers.
Related resources
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Back to Case studies: Working together to make an impact in health care
How to cite:
Canadian Institute for Health Information. Bridging the gaps in dementia care through collaborative surveillance and data analysis. Accessed April 25, 2025.
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