Enhanced Dementia Surveillance Initiative

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 evidence 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:

• early 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:

1. Contribution agreements
2. Memoranda of agreement
3. 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

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 aims to work with Inuit, First Nations and Métis partner organizations to conduct a feasibility study to develop acceptable and appropriate methods for improving dementia surveillance among Indigenous populations.

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.

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.

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

Organization: Queen's University

Principal investigators: Dr. Neil Drummond, Dr. Richard Birtwhistle and Dr. John Queenan

Duration: 2020 to 2021

Priority gaps 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 will display all of the currently available dementia-related data from participating networks, in a format appropriate for viewing through the Canadian Primary Care Sentinel Surveillance Network website.

Memoranda of agreement

These projects are led by provincial partners, in collaboration with the Public Health Agency of Canada, 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.

Federal collaboration

Statistics Canada is 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.