Enhanced Dementia Surveillance Initiative
On this page
- Overview
- Projects, by data gap and funding mechanism
- Contribution agreements
- Memoranda of agreement and contracts
- Federal collaboration
Overview
The Enhanced Dementia Surveillance Initiative aims to support the implementation of A Dementia Strategy for Canada: Together We Aspire. The initiative has funding of $10 million over 5 years and runs from 2019 to 2024.
This initiative aims to inform public health actions with new findings from surveillance and data. Projects launched under the initiative will help address 3 data gaps:
Dementia by cause, progression stages and impacts
This data gap includes:
- young onset dementia
- causes of dementia, like:
- mixed dementia
- vascular dementia
- Alzheimer's disease
- frontotemporal dementia
- dementia with Lewy bodies
- dementia progression/stages
- dementia comorbidities/multi-morbidity
- social, emotional, mental and physical wellbeing of people living with dementia
Socio-demographic characteristics, risk and protective factors
This data gap includes:
- socio-demographic characteristics of those living with dementia, like ethnicity and socio-economic status
- currently established risk and protective factors for the development of dementia, like social isolation and smoking, as well as exploring new ones
Dementia caregivers
This data gap includes:
- dementia caregivers' needs and access to support services
- health impacts of caregiving for individuals living with dementia
- social, emotional, mental and physical wellbeing of dementia caregivers
To support the projects under the initiative, there are 3 funding mechanisms that engage stakeholders and partners:
- Contribution agreements
- Memoranda of agreement and contracts
- Federal collaboration
Contribution agreements
These projects are led by academic stakeholders and implemented under the Enhanced Dementia Surveillance Program.
A comprehensive and holistic approach to dementia surveillance in Canada
Organization: Schlegel-University of Waterloo Research Institute for Aging
Principal investigators: Dr. George Heckman and Dr. Carrie McAiney
Duration: 2020 to 2024
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
- Dementia caregivers
Project description: The project aims to develop an enhanced dementia surveillance system based on an evidence-informed, multi-faceted and holistic person-centered framework, with contributions from persons living with dementia and their care partners. The objective is also to map existing data sources against this framework to identify gaps and to formulate recommendations accordingly.
A National Indigenous dementia surveillance initiative – A feasibility study (Part 1)
Organization: McMaster University
Principal investigators: Dr. Jennifer Walker and Dr. Megan O'Connell
Duration: 2020 to 2022
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
Project description: The project aimed to work with Inuit, First Nations and Métis partner organizations to conduct a feasibility study to explore acceptable and appropriate methods for improving dementia surveillance among Indigenous populations. This project produced a scan of the current strategies used in tracking and monitoring dementia in Indigenous populations across Canada.
A National Indigenous dementia surveillance initiative – A feasibility study (Part 2)
Organization: McMaster University
Principal investigators: Dr. Jennifer Walker and Dr. Megan O'Connell
Duration: 2022 to 2024
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
Project description: This project aims to enhance the monitoring of dementia by First Nations communities. Together with the Anishinabek Nation and Za-Geh-Do-Win Information Clearing House in Ontario, a robust training platform will be developed and piloted to facilitate uptake of the Canadian Indigenous Cognitive Assessment (CICA). The use of the this culturally sensitive dementia screening tool will help improve cognitive screening and enhance dementia-related data collection in First Nations communities.
Ascertaining dementia and surveillance of risk factors in the Canadian Longitudinal Study on Aging
Organization: McMaster University
Principal investigators: Dr. Parminder Raina, Dr. Lauren Griffith and Dr. Andrew Costa
Duration: 2020 to 2024
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
Project description: The project aims to enable the early identification of people living with dementia (both diagnosed and undiagnosed dementia) and those at risk of developing dementia (including those with mild cognitive impairment) to facilitate more appropriate care and to improve the understanding of risk factors.
Publication: Jones A, Bronskill SE, Maclagan LC, et al. Examining the immediate and ongoing impact of the COVID-19 pandemic on population-based estimates of dementia: a population-based time series analysis in Ontario, Canada. BMJ Open 2023;13:e067689. doi: 10.1136/bmjopen-2022-067689
Climate change surveillance for chronic health effects in populations: Enhanced activities focused on dementia (Amendment)
Organization: University of Alberta
Principal investigator: Dr. Shelby Yamamoto
Duration: 2022 to 2023
Priority gap covered:
- Socio-demographic, risk and protective factors
Project description: This project aims to investigate the risk of dementia in relation to weather and air pollution exposures, and modification of those risks by social and environmental indicators. Data on these indicators across Alberta will be mapped. This project will also generate evidence to help inform adaptive strategies for those living with dementia and increase the knowledge surrounding the disease.
Health surveillance of community-dwelling, person-with-dementia and caregiver dyads
Organization: LIFE Research Institute, University of Ottawa
Principal investigators: Dr. Annie Robitaille and Dr. Neil Drummond
Duration: 2020 to 2024
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
- Dementia caregivers
Project description: The aim is to build on the existing Canadian Primary Care Sentinel Surveillance Network to create a longitudinal cohort of dyads examining the experiences of persons living with dementia and their caregivers from several provinces. Data collected through online forms will also capture richer social and economic information.
Homelessness Counts: Exploring dementia in people experiencing homelessness (Amendment)
Organization: Lawson Health Research Institute
Principal investigators: Dr. Richard Booth and Dr. Cheryl Forchuk
Duration: 2022 to 2023
Priority gaps covered:
- Socio-demographic, risk and protective factors
Project description: The aim of this project is to conduct population-level analysis of people experiencing homelessness who have dementia, drawing from established dementia case ascertainment algorithms using Ontario health administrative data. The second objective is to examine how interactions with community and health services may help to predict homelessness. Better understanding the housing status of those living with dementia can inform dementia management and care.
Project website: Homelessness counts
The implementation of the 'Canadian Primary Care Sentinel Surveillance Network Data Presentation Tool' in primary care clinics to enhance the surveillance, prevention and management of chronic disease: Phase 3 (Amendment)
Organization: Queen's University
Principal investigators: Dr. Neil Drummond, Dr. Richard Birtwhistle and Dr. John Queenan
Duration: 2020 to 2021
Priority gap covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
Project description: During the earlier phases of this project, a data presentation tool for the data collected through the Canadian Primary Care Sentinel Surveillance Network was developed. This third phase aimed to create a public access version of this tool, with a focus on the management of dementia. The public access version displays currently available dementia-related data from participating networks, in a format appropriate for viewing through the Canadian Primary Care Sentinel Surveillance Network website.
Dashboard Website: Dementia in The Canadian Primary Care Sentinel Surveillance Network
National Dementia Caregiver Surveillance through First Link®: A Pilot Project by Alzheimer Society of Canada
Organization: Alzheimer Society of Canada
Principal investigators: Dr. Saskia Sivananthan and Dr. Paul Stolee
Duration: 2022 to 2024
Priority gap covered:
- Dementia caregivers
Project description: The central goal of this project is to fill data gaps in knowledge of dementia caregivers’ needs and access to support services. The Alzheimer Society has existing programs and centralized databases, such as the First Link® program, that will be leveraged to collect new deidentified quantitative indicators on the health and wellbeing of dementia caregivers. The results of this work can be used to create national profiles of caregivers to support policy decisions that will reflect the needs of those providing informal care.
Memoranda of agreement and contracts
These projects are led by provincial partners in collaboration with the Public Health Agency of Canada, as well as academic stakeholders, and build on the Canadian Chronic Disease Surveillance System.
Canadian Chronic Disease Surveillance System case capture and dementia prevalence in long-term care settings
Participants: British Columbia, Ontario and Quebec
Duration: 2020 to 2024
Priority gap covered:
- Dementia by cause, progression stages and impacts
Project description: A large proportion of Canadians with dementia live in long-term care settings. This project will assess the level of capture of dementia cases in long-term care versus in the community and will enable reporting of dementia prevalence in both settings.
Disease and mortality trajectory among Canadians with dementia
Participants: British Columbia, Ontario, Prince Edward Island and Quebec
Duration: 2020 to 2024
Priority gap covered:
- Dementia by cause, progression stages and impacts
Project description: As dementia affects mainly older individuals and as the prevalence of chronic conditions generally increases with age, dementia often co-occurs with other chronic conditions. This project aims to describe the prevalence of comorbidities among Canadians with dementia, their sequence of occurrence, as well as their impacts on survival and use of health care.
Exploring linkage opportunities to enrich Canadian Chronic Disease Surveillance System data
Participants: British Columbia and Quebec
Duration: 2020 to 2024
Priority gap covered:
- Socio-demographic, risk and protective factors data
Project description: Linkages between the Canadian Chronic Disease Surveillance System data and other national data (such as self-reported or measured survey data, and electronic medical record data) are considered for this project. These linkages can be an effective way to increase the scope of Canadian Chronic Disease Surveillance System data and provide important additional information on Canadians living with dementia.
Total and average costs of healthcare resources utilized by people living with dementia
Participant: Ottawa Hospital Research Institute
Duration: 2022 to 2024
Priority gaps covered:
- Dementia by cause, progression stages and impacts
- Socio-demographic, risk and protective factors
Project description: The project aims to provide estimates of the total and average costs of health care resources utilized by people living with dementia in Ontario, centered on the CCDSS dementia case definition. This project will examine the health care costs in four stages (pre-diagnosis, diagnosis, progression, end-of-life), using several data sets. It also aims to explore the addition of novel risk factors into DemPoRT-R to estimate their impact on dementia incidence. The DemPoRT-R platform is a predictive risk tool to estimate 5-year dementia risk in the community.
Federal collaboration
The Canadian Institute of Health Information and Statistics Canada are also contributing to the initiative by leading new surveillance activities under their mandate, in collaboration with the Public Health Agency of Canada.
Population Health Model (POHEM), a microsimulation model for dementia projections
Department: Health Analysis Division, Statistics Canada
Duration: 2019 to 2023
Priority gap covered:
- Socio-demographic, risk and protective factors data
Project description: In collaboration with the Public Health Agency of Canada, Statistics Canada is developing a microsimulation model of dementia, which will project dementia incidence, prevalence and risk factors for dementia among the Canadian population. The Population Health Model (POHEM) for dementia (POHEM-Dementia) is a tool that will enable policy makers to investigate the contribution of modifiable risk factors to dementia incidence, and to evaluate potential intervention strategies and policy options.
Dementia in long-term care and home care settings: An in-depth data exploration and analysis of the Canadian Institute for Health Information’s data holdings
Organization: Canadian Institute for Health Information (CIHI)
Duration: 2022 to 2024
Priority gaps covered:
- Socio-demographic, risk and protective factors
- Dementia caregivers
Project description: This project aims to analyze data, currently available at the Canadian Institute of Health Information, on individuals living with dementia and their caregivers, looking at the progression of the condition and their transitions within the healthcare system for the former, and the experiences and outcomes of caregiving for the latter. A second objective of this project is to assess the availability of socio-economic status and risk factor data for individuals living with dementia in long-term care and long-stay home care settings.
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