A story of innovation: Building a national surveillance system for dementia in Canada: Epidemiology / Innovative methods in epidemiology (i.e., assessment methods, design, recruitment strategies, statistical methods, etc.)

Background Accurately capturing cases of dementia at the population‐level is complex, given the nature of the condition. Over the past decade, Canada has focused on this challenge, evolving and improving dementia surveillance in collaboration with multiple stakeholders. Method Originally based on self‐reported data, dementia data in Canada were limited to the prevalence of the condition and were significantly underestimating its burden. Canada sought to develop an innovative and systematic approach to enhance dementia surveillance by, initially, undertaking the National Population Health Study of Neurological Conditions and, then, exploring the feasibility of using linked health administrative data. The Canadian Chronic Disease Surveillance System (CCDSS), a network of provincial/territorial surveillance systems supported by the Public Health Agency of Canada, since became the core platform to support national reporting on dementia. Result A validated case definition, incorporating data from hospitalizations, physician claims and drug prescriptions, was developed and applied to the CCDSS linked databases. As a result, since 2016, national and provincial/territorial estimates of dementia incidence, prevalence, and mortality over time (dating back to 2002) are released annually. With the recent adoption of Canada’s National Dementia Strategy in 2019, other innovative methods are being explored to enhance surveillance, including: analysing the trajectory of the condition, with the development of comorbidities and impacts on health outcomes; creating new data linkages to enrich the sociodemographic information on individuals living with dementia; assessing the feasibility to monitor early onset dementia. Conclusion Utilizing the unique capacity of the CCDSS, a new national surveillance system for dementia in Canada has been implemented. The evolution and innovation of dementia surveillance over the course of the past decade can provide valuable lessons for the surveillance of dementia and other complex conditions in other countries.