Rare Dementia Support Canada provides a continuous and tailored specialist support community for people who are living with, affected by, or at risk of, a diagnosis of rare or young onset dementia. We currently support people affected by:
- Young onset Alzheimer’s disease
- Familial Alzheimer’s disease
- Frontotemporal dementia
- Familial frontotemporal dementia
- Progressive primary aphasia
- Posterior cortical atrophy
- Lewy body dementia
We are led by Nipissing University through a generous donation from The Hilary and Galen Weston Foundation. Our support services are delivered by a team of support practitioners in partnership with Rare Dementia Support in the UK.
Our services are delivered on-line so we can connect with people living across Canada – no matter where you live. If you are not on-line for any reason, we can connect with you using the telephone. We are currently open Monday to Friday, 8:30am – 4:30pm (EST). However, we are flexible for people living in other time zones.
Our Vision and How We Work
RDS Canada’s vision is for everyone affected by rare or young onset dementia to have access to the right information, tailored and continuous support, and to have connection with others affected by similar conditions in a space of mutual respect and understanding.
Our primary goal is to offer information and advice, develop a support community of people with lived experience and dedicated practitioners, and engage in ongoing learning about what support works and when it works best.
Advice and Support
Our support team currently offers one-to-one, family and group support. Support is often tailored according to a disease/condition (e.g., PCA), age or stage (e.g., later stages and end-of-life care), relationship to the person living with dementia (e.g., spousal care partner, teenage children) and other dedicated support spaces (e.g., 2SLGBTQI). Sometimes we include guests to help us understand more about particular topic areas. We also offer smaller group conversations on specific topics (e.g., supporting children and young people, maintaining social connectedness, navigating family celebrations, sensory engagement in later stages). A schedule of our groups can be found in our Member Area.
If your support needs fall outside the remit of RDS Canada (e.g., medical treatment, crisis intervention, psychological interventions), we will direct you to another relevant health care provider.
To access support from us, you will need to register your membership on-line. Once you register with us, you don’t need to re-register at any time. Following your registration, you will receive an automatic email describing more details of the service and when we expect to contact you for an initial discussion about your situation and what information or support you think you need. When appropriate, we will keep a record of our contact with you to help us deliver support and, in some cases, to evaluate our services. If we feel it is important to speak to another person outside of RDS Canada and share information, we will first seek your permission. There will be an exception to this in the event of an emergency only.
At RDS Canada we work in partnership with other dementia services to provide education and develop educational resources for rare and young onset dementia. Practitioners should register with us to access our newsletter, educational opportunities or request advice or training about a specific type of rare dementia.
We also host students who are studying medicine, social work, nursing, psychology, or other careers for clinical or field education.
Our team is continually engaged in research to learn more about the design, delivery and impact of rare dementia support. More information on our current work is found on our Research page. If you are interested in learning more about our research or participating in one of our studies, you can contact us at RDSCanada@nipissingu.ca