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Providing rare dementia support across Canada

Daughter with arm around father smiling

Who we are

RDS Canada provides a free information and support service for people living with, or affected by, a diagnosis of rarer or young onset dementia. We are a community of people in similar circumstances and specialist practitioners providing timely and tailored practical, emotional and social support.

Our focus is:

  • Young onset Alzheimer’s disease
  • Familial Alzheimer’s disease
  • Frontotemporal dementia
  • Familial frontotemporal dementia
  • Progressive primary aphasia
  • Posterior cortical atrophy
  • Lewy body dementia
Virtual meeting

How we can support you

Our support specialists are here to speak with you. Sometimes people just need a bit of information and at other times people may need a listening ear or emotional support by meeting up with others who feel the same.

We also offer information and advice for practitioners who work with people affected by rare or young onset dementia in a variety of settings. Working together is important to respond to a range of support needs, whether someone has just been diagnosed or whether they have been living with dementia for some time.

Welcome, Bonjour, Aaniin! Join our community.

If you need information or support and would like to connect with us, you can:

Find information and support that is right for you

If at any time you feel overwhelmed with the information provided in our website, click here for supportive tools.

News & Events

Sip & Sonder: Connections with Self, Family, Community and the Natural Environment

Thank you to all who gathered at the North Bay museum on November 1st and 2nd to explore our installation of stories of connection and living with dementia. The event included welcome and refreshments, open gallery & Imagine and Create Your Own Maps.

Support Group for Familial Alzheimer’s Disease

In partnership with Rare Dementia Support (UK) and Youngtimers (USA), Rare Dementia Support Canada hosted a joint support group to bring together individuals from the US, Canada, and the UK (and beyond) impacted by autosomal dominantly inherited familial Alzheimer’s disease (sometimes referred to as ADAD, DIAD or FAD).   We are pleased to announce that the 90 minute group support session ran on Sunday, November 19th and included an international group of participants.  For more information please email rdscanada@nipissingu.ca.

Talking Lines creative research update 

Talking Lines is a research project which combines both visual and verbal modes of communication, taking the concept of the drawn line as a starting point to promote communication and narrative construction.  Talking Lines invited 27 people living with or caring for someone with a rare dementia to draw and talk about their experiences; reflecting on deeply challenging situations such as maintaining identity in the face of a diagnosis, the realities of care, and wider social and cultural narratives about dementia. There will be a presentation of this research at the Drawing Room Library, London (UK), which will focus on the drawings and words of 4 participants who took part in the research, including Canadian participation.

FTD Webinar

RDS Canada hosted an educational webinar tailored to exploring matters important for individuals impacted by frontotemporal dementia (FTD). The webinar was open to all registered members of RDS Canada. A recording of the webinar is now available. Please visit the Webinar page in the Member Area of the website.

Identification Cards

This resource provides users with a quick and easy way to share a brief amount of information on a particular diagnosis. Along with personal details such as name and contact phone numbers, each card provides a few details on symptoms for PCA, FTD, LBD, YOAD and PPA. These cards are designed to help the user access help when they may be out on their own. RDS Canada offers the Identification Cards on the Resources page in the Member Area. Files are available for download and printing at home.

We want to hear from you…

Your input is important to us! Your opinions and experiences help us to improve our services.

Our National Launch

Rare Dementia Support Canada celebrated its official opening!

Where to Begin – Poetry Installation at Nipissing University

A poetry installation exploring what it is like to live with a rarer dementia