rare dementia support

rare dementia support

Rare Dementia Support (RDS) is a UK-based service provided by the UCL Dementia Research Centre (DRC) and partners, and funded by The National Brain Appeal.

Between 5% and 15% of people living with a dementia have a rare dementia, which brings with it a unique set of challenges. However, there is a widespread lack of understanding and resources to support them. Rare Dementia Support (RDS) aims to empower, guide and support everyone living with a rare dementia diagnosis and those that care about them.

RDS supports people affected by six of the rare dementias. These are: Posterior cortical atrophy (PCA), frontotemporal dementia (FTD), primary progressive aphasia (PPA), dementia with Lewy bodies (DLB); familial Alzheimer’s disease (FAD) and familial frontotemporal dementia (fFTD).

Combining social, emotional and practical support with research and training about rare and young onset dementias, RDS is working to increase awareness about these conditions so those affected feel better supported in their communities.
We run dedicated support groups that bring people together to share their experiences and a dedicated Specialist Support Team, who are available by email and telephone. Our vision is for all individuals affected by or at risk of a rare dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions, in a space of mutual respect and understanding.

Support groups

For more information about support groups, please visit:

For more information about support groups for genetic forms of dementia, please visit:

If you or someone you know is affected by one of these rare dementias, the RDS website is intended to guide you and provide you with information, as well as signposting to useful resources.

The FAD and fFTD Support Groups each hold a national meeting once a year in London for families affected by these inherited forms of dementia. There are also separate meetings available for carers and bereaved carers. Meetings provide an opportunity to connect with others in similar situations as well as a range of professionals to get help, information, advice and support.

For more information, please contact the RDS Specialist Support Team at [email protected] or by telephoning 07388 220355 or 07341 776317.

For information specific to inherited dementias please contact: Dr Catherine Mummery at [email protected] for FAD and Dr Jonathan Rohrer at [email protected] for fFTD.

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