At the Dementia Research Centre, we’re involved in a number of support groups that provide information and support to people with rare forms of dementia, their families, friends and healthcare professionals. We’re in the process of bringing these groups together under one banner – Rare Dementia Support – to extend our reach and give us a stronger voice for fundraising and advocacy, ensuring their continued expansion.
The five rare dementia diagnoses that we support are frontotemporal dementia (FTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), familial Alzheimer’s disease (FAD) & familial frontotemporal dementia (fFTD).
Our vision is for all individuals with or at risk of one of these rarer forms of dementia to have access to specialist information, support and contact with others affected by similar conditions. Rare Dementia Support is a fund held by The National Brain Appeal (registered charity number: 290173).
For more information about the groups, please see the links below.
- Familial Alzheimer's disease (FAD)
- Posterior cortical atrophy (PCA)
- Primary progressive aphasia (PPA)
- Frontotemporal dementia (FTD)
- Familial frontotemporal dementia (fFTD)
In July 2015, a letter to the BMJ (formerly the British Medical Journal) by Jill Walton, Natalie Ryan, Sebastian Crutch, Jonathan Rohrer and Nick Fox was published: The importance of dementia support groups (pdf).
In December 2014 we co-hosted an event with Baroness Sally Greengross in the House of Lords to raise awareness of young onset dementia. We put together an information pack for the attendees.