Rare Dementia Support Canada

Rare Dementia Support Canada logo

Rare Dementia Support Canada is a support service for Canadians living with rare and 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 international 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)

The RDS Canada website is forthcoming. Click here for information on RDS (UK).

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

To learn more about our support services, the RDS Impact Study or speak to member for the support team contact:

Dr. Mary Pat Sullivan

Rare Dementia Support Lead


Dr. Adetola Grillo

Research Fellow, RDS Impact Study


Jennifer Gordon

Research Assistant, RDS Impact Study