The Canadian Institutes of Health Research (CIHR) Institute of Aging, in partnership with the Institute of Health Services and Policy Research and the Azrieli Foundation and its Canadian Centre for Caregiving Excellence (CCCE), has announced a significant grant to support a Nipissing University-led project titled "A Realist Evaluation of Rare Dementia Support: Peoples, Spaces and Places."
The project, led by Dr. Mary Pat Sullivan and Dr. Veronika Williams from Nipissing University, has been awarded $746,080 over three years. The research team also includes Sebastian Crutch from University College London (UK), Stephanie Tierney from the University of Oxford (UK), Matthias Hoben from York University (Toronto), and Jeff Thornborrow from Nipissing University. The team will work with knowledge users and collaborators from the McGill University Dementia Education Program, Vision Loss Rehabilitation Canada, Nipissing University, and individuals with lived experience.
Funded through the CIHR Operating Grant: Evaluation of Dementia Programs, Services, & Care Models, the project aims to localize and expand the Rare Dementia Support (RDS) model within Canada, ensuring it reaches diverse populations and regions. The research will evaluate the effectiveness of different support mechanisms, examining how and when they impact individual and family well-being. The study will also provide insights into the best ways to offer centralized specialist support alongside local general support across Canada’s diverse landscapes. By optimizing the RDS model’s impact, the research will improve the quality of life for those affected by rare dementia.
“We are deeply grateful for the support from CIHR and our partners. This grant enables us to continue our crucial work in understanding and enhancing the support systems for individuals and families affected by rare dementias,” shared Dr. Sullivan. “Our goal is to create a more inclusive and effective network of support that meets the unique needs of these communities across Canada. We are committed to making a lasting impact on dementia care and support.”
Up to 15 percent of individuals living with dementia have a rare, inherited, or young-onset form of the condition. These individuals often face unique challenges, including atypical symptoms, early age of onset affecting family life and employment, and limited access to specialized support services. Dr. Sullivan’s recent five-year study with colleagues in the UK demonstrated the benefits of multi-component support, including access to specialist information, individual and group peer support, and continuous learning opportunities to better understand diverse lived experiences and improve access to high-quality support and care.
The initial study's findings led to the creation of Rare Dementia Support (RDS) Canada, funded by the Hilary and Galen Weston Foundation and delivered in partnership with RDS in the UK. RDS Canada offers tailored support for individuals and families affected by rare dementias, complementing traditional dementia care services.
