From community to policy: a frontline model for dementia assessment and brain health

Globally, dementia prevalence is projected to rise from approximately 55 million people in 2025 to 139 million by 2050. In Ontario, prevalence is estimated to reach 756,100 people by 2050—an increase of 202% since 2020—placing increasing strain on care partners, families, and health systems (Alzheimer Society of Canada, 2022). Throughout Ontario and Canada more broadly, existing pathways for cognitive screening, assessment, and diagnosis are constrained by limited primary care capacity, prolonged specialist wait times, and inequitable access, leaving many individuals without timely assessment or connection to supports. To help address these gaps, the Alzheimer Society of Ontario (ASO) and the Ontario Brain Institute (OBI) leveraged an existing community-delivered cognitive assessment process and enhanced it through the co-development of a provincial dementia registry—the first of its kind in Canada. This novel integrated approach embeds structured cognitive and functional assessment within community organizations, shares assessment results with primary care, and links standardized data to a provincial registry infrastructure. Together, this supports timely identification of cognitive concerns and enables the collection of a standardized minimum dataset—including cognitive, functional, demographic, and care-related information—across diverse populations. The dementia registry can serve as infrastructure to evaluate dementia-related innovations (including digital cognitive-screening tools) in real-world settings and support evidence generation to inform service planning and policy development, while strengthening earlier connection to supports and more coordinated care pathways for individuals and their care partners. This approach is aligned with emerging regulatory emphasis on real-world evidence (U.S. Food and Drug Administration, 2018; European Medicines Agency, 2021; Health Canada, 2019) and with Ontario’s Improving Dementia Care in Ontario Act (2024), illustrating how co-designed, frontline-led approaches may bridge community needs and health system decision-making. Together, this work lays the groundwork for a scalable framework to advance equitable, person-centred dementia care in Ontario and beyond.