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 Bangor, 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 http://www.raredementiasupport.org/).

How can I get involved?

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

We are in the process of establishing a regional rare dementia support group in Gwynedd.

If you are interested, please contact the regional lead Roberta McKee-Jackson r.mckee-jackson@ucl.ac.uk

If you would like a chat with one of our team, please contact Jen Roberts j.roberts@bangor.ac.uk or call (01248) 388346.

If Jen is not available please leave a message with our project secretary, Iona Strom i.strom@bangor.ac.uk (01248) 383050, and we will get back to you as quickly as possible.

Research

We are part of a five-year Rare Dementia Support (RDS) Impact Study, a collaboration between University College London (UCL), Bangor University and Nipissing University in Canada, 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. 

http://www.raredementiasupport.org/research/