Rare Dementia Support

Rare Dementia Support (RDS) offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. Our vision is for all individuals with, at risk of or supporting someone with one of these forms of dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions. RDS welcomes people from all areas of society affected by a rare dementia regardless of gender, age, marital or family status, race, ethnicity or sexual orientation. RDS provides support for seven rare dementias. These are- Posterior cortical atrophy (PCA)- Primary progressive aphasia (PPA)- Frontotemporal dementia (FTD)- Familial frontotemporal dementia (fFTD)- Familial Alzheimer’s disease (FAD)- Lewy body dementia (LBD)- Young-onset Alzheimer’s disease (YOAD) Rare dementias are proportionately more likely to develop in individuals at a younger age (before 65 years old), raising challenges relating to individual and family transitions (e.g. work, retirement planning, childcare and care). Following diagnosis, many find that existing health, social and voluntary services do not cater adequately for their individual needs. 30% of people living with a rare dementia initially receive an incorrect diagnosis and there is a widespread lack of understanding and a shortage of dedicated resources to support those affected. We are working together with people affected by rare dementias, to provide social, emotional and practical support alongside research and training about rare dementias. For information, advice and support, please email contact@raredementiasupport.org