Rare Dementia Support Canada

About Us

Rare Dementia Support Canada is a support service for Canadians living with rare or young onset dementia led by Nipissing University. This service is delivered in partnership with Rare Dementia Support (RDS), University College London (UCL) in the UK. RDS is a world-leading service provided by UCL Dementia Research Centre and partners and funded by The National Brain Appeal.

Almost 4 million people across the globe are living with young onset dementia (30-64 years of age). Although Alzheimer’s disease is the most common form of dementia, there are other diseases and conditions that can lead to dementia. These rarer forms often affect people who are younger in age.

RDS Canada provides a virtual space for anyone affected by a rare dementia offering access to information, tailored individual and group support and guidance, and connection with others who are affected by similar conditions. The team includes dementia care practitioner specialists, researchers, educators and individuals with lived experience through our Advisory Group. We continue to work with the large RDS team in the UK and our support services are sometimes co-delivered with them.

We currently offer support to people affected by the following conditions:

  • Young onset Alzheimer’s disease (YOAD)
  • Frontotemporal dementia (FTD), including behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA)
  • Lewy body dementia (LBD)
  • Posterior cortical atrophy (PCA)

RDS Canada is generously supported by The Hilary and Galen Weston Foundation.

For updates on our development follow us on Twitter or Instagram: @RDSCanada


To learn more about our support services, the RDS Impact Study or speak to member for the support team contact RDSCanada@nipissingu.ca or a member of the team:

Dr. Mary Pat Sullivan

Rare Dementia Support Lead


Dr. Veronika Williams

RDS Canada Collaborator


Jennifer Gordon

Rare Dementia Support Canada Manager


Dorothy Larkman

RDS Canada Oshkabaywis