Abstract
Background: Alzheimer Society of Ontario (ASO) and Ontario Brain Institute (OBI) partnered with local providers and experts-by-experience to enhance community capacity for dementia assessments, fill real-world evidence gaps, and make dementia care in Canada more coordinated and equitable.
Approach: ASO, a federation of 26 frontline community support service providers for dementia, supported >84,000 clients last year. Many clients struggled to have their memory concerns addressed clinically. Primary care providers (PCPs) indicated they couldn’t allot 60+ minutes per patient for proper memory assessments. Thus, ASO co-developed a referral-based program for conducting functional and cognitive assessments on behalf of PCPs.
The program’s success led to an alliance with OBI, a non-profit organization advancing brain health solutions. OBI provides research, informatics, and neurotechnology expertise to support collection of community-based data to fill an evidence gap about dementia care. Together, we standardized cognitive and functional assessment forms; increased capacity for community-based assessments; and centralized real-world data into the Canadian Dementia Registry on Brain-CODE, OBI’s informatics platform. The initiative began at 4 ASO chapters: 3 rural and remote sites and 1 suburban site supporting newcomers to Canada.
In parallel, an observational cohort embedded in the registry is testing a digital cognitive screening tool to prioritize clients requiring assessment. We are (1) validating the screening tool against gold standards in populations that are underrepresented in research and (2) evaluating the tool implementation to understand barriers/facilitators. If positive, the screening tool will be embedded into the registry and care pathway, thereby optimizing utilization of health and social care services.
Co-design and engagement are central to our initiative. PCPs identified a need for the assessments and willingness for community providers to collaborate. Local staff provided advice on operationalizing the registry and on standardizing the assessments. People affected by dementia provided valuable feedback at all stages (e.g., design, consent language, follow-up visits). OBI surveyed ~2,500 Canadians, predominantly seniors, about brain health and digital brain health technologies to ensure relevance of the tool.
Results: The initial cognitive and functional assessment program was tremendously successful. One ASO site assessed 1,500 clients in one year and another site now has a 9-month waitlist. The registry is actively recruiting 2,000 individuals. Longitudinal follow-ups are being co-created with PCPs, specialty care and people living with dementia and their care partners. The dementia registry empowers people affected by dementia with a disease trajectory that is often characterized by helplessness and hopelessness.
Implications: This innovative collaboration led by ASO (community) and OBI (non-profit) creates a unique model for capturing real-world evidence that will transform dementia care in Canada. Our commitment to consistently engaging people affected by dementia ensures they have a voice in designing, testing and deploying supports delivered how, when, and where they prefer. Integrated community care pathways are being built and tested to alleviate bottlenecks, support timely dementia detection and diagnosis, and provide better clinical and community supports for people affected by the disease. Findings from the registry will support government policies to improve health and social care integration.