Advancing

Equity,

Innovation,

and

Compassionate

Care

Individuals living with rare, inherited, or young-onset dementias — representing 5-15% of all dementia cases — are frequently overlooked by systems and services tailored primarily for older adults with Alzheimer’s disease. Individuals with rare dementias often experience prolonged diagnostic journeys, limited access to specialized care, and a lack of support designed for their unique needs. Rare Dementia Support Canada (RDS Canada), based at Nipissing University in North Bay, Ontario, is working to change that. With a mandate rooted in research, education, and community engagement, RDS Canada is dedicated to improving the lives of those affected by rare dementias and their families.

Initial seed funding from The Hilary and Galen Weston Foundation enabled the launch of RDS Canada in 2021 — establishing a vital foundation for delivering research-informed support, fostering collaborative partnerships, advancing public education, and initiating targeted research. This early support helped create the infrastructure necessary for addressing critical gaps in care and awareness across Canada.

“It was a difficult road, alone, and not knowing where to turn. I came to learn of RDS Canada and I am a different person today,” said Debra Scott, whose husband lives with Behaviourial Variant Frontotemporal Dementia. “My journey began with individual support sessions, which gave me hope, and I received much-needed information from the recommended courses and speaker events. The monthly diagnosis-specific support group fostered a more profound understanding by hearing others’ experiences and exploring my own, in a trusting and open forum. The peer conversations were crucial to feeling more connected and stronger. I do not know where I would be without the help and support of RDS Canada; it is a lifeline.”

With a transformative renewed commitment from the Foundation in 2025, RDS Canada is now entering a five-year growth phase. This investment will support the establishment of a dedicated, stand-alone space in North Bay that will serve as a national hub for tailored services, peer connection, and resource development. It will also empower RDS Canada to expand its reach across the country using cutting-edge technology, ensuring equitable access to ongoing, personalized support for all individuals and families affected by rare dementias — no matter where they live. The organization will grow its education and research impact through increased student placements, innovative dementia education programs, new research publications, and stronger national and international collaborations.

By becoming a leader in rare dementia support in Canada, RDS Canada is filling a significant gap that will enable the many Canadians across the country impacted by rare dementia to live their lives to their fullest potential.