Between 5% and 15% of people living with a dementia receive a diagnosis of a rare or young-onset dementia. The diagnosis of a rare dementia brings with it a set of unique and complex challenges. For example, 30% of people living with a rare dementia first receive an incorrect psychiatric diagnosis. There is a widespread lack of understanding about rare dementias and a shortage of dedicated resources to support people affected by rare dementias.
Rare Dementia Support (RDS)
Rare Dementia Support (RDS) is a UK based service provided by the UCL Dementia Research Centre (DRC). RDS works to support people affected by five rare dementia conditions: Familial Alzheimer’s Disease (FAD), Frontotemporal Dementia (FTD), Familial Frontotemporal Dementia (fFTD), Posterior Cortical Atrophy (PCA), Primary Progressive Aphasia (PPA).
We work with people living with these dementias, their carers, their families and their friends. We provide information about rare dementias and guidance on living with a particular disease diagnosis. We run UK based support groups that bring people together to share and compare their experiences, and we promote networks of people who support each other at the groups and in the community.
Our aim is to help people affected by one of these rare dementias feel supported and valued.
Our vision is that everyone living with, or at risk of living with, one of these rare dementias has access to specialist information, support and contact with others affected by similar conditions.
RDS runs groups for each of the following rare dementias.