Providing rare dementia support across Canada

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.

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 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.

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.

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.

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Rare Dementia Support Canada celebrated its official opening!

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