Rare Dementia Support

Between 5% and 15% of people living with a dementia receive a diagnosis of a rare or young-onset dementia (before the age of 65). A rare dementia diagnosis brings with it a set of unique and complex challenges, yet there is a widespread lack of understanding and a shortage of dedicated resources to support people affected by rare dementias.

At Nipissing, we are working in partnership with colleagues in University College London who run Rare Dementia Support, a UK based service working to support people affected by five rare dementia conditions (for more information please see www.raredementiasupport.org).

How can I get involved?

We are part of a five-year Rare Dementia Support (RDS) Impact Study, a collaboration between University College London (UCL), Nipissing University and Bangor University led by Professor Sebastian Crutch from the Dementia Research Centre, UCL. 

This is the first major study of its kind, and will examine the specific challenges, support needs and care preferences of people affected by a rare dementia, and the value of a support group such as that provided by the Rare Dementia Support Network. 

If you would like to become a member of Rare Dementia Support, and receive further information about support and research opportunities, please click here.

If you would like to speak to someone on the Nipissing University team or would like information on research opportunities on rare dementia in Canada, please contact Dr. Mary Pat Sullivan maryps@nipissingu.ca or Dr. Adetola Grillo adetolag@nipissingu.ca (705-474-3450 Ext. 4858) at Nipissing University.

If you would like support for rare dementia in Canada, please contact the Alzheimer Society Sudbury-Manitoulin North Bay and District: alzheimer.ca/en/sudburymanitoulin