A lifeline for people affected by dementia

Since 2018, we have provided funding towards the running of Rare Dementia Support (RDS), a UK-based service. Led by the UCL Dementia Research Centre and partners, RDS offers specialist social, emotional and practical support services for individuals living with, or affected by rare dementias.

Professor Nick Fox. Image credit: Dementia Research Centre, Institute of Neurology, UCL

Rare dementias affect up to 15% of people with a dementia diagnosis – an estimated 141,600 in the UK. They can cause difficulties with vision, language, movement and behaviour and are more likely to develop at a comparatively young age (before 65 years old). They therefore present different challenges to more common forms of dementia, including managing transitions out of work, and even childcare. Many existing dementia support services do not cater adequately for the needs of people facing these challenges.

RDS raises awareness about rare dementias and offers a network that is life-changing for its members, providing access to reliable information, tailored support, and contact with others affected by similar conditions. The service works with more than 6,000 members across the UK, almost 2,000 of whom receive one-to-one support. Small and large peer support groups are held both online and offline for people at every stage of a rare dementia diagnosis and their carers. Diagnosis specific groups are offered for each of the seven forms of rare dementia for which the service provides support: Posterior cortical atrophy, Primary progressive aphasia, Frontotemporal dementia, Familial frontotemporal dementia, Familial Alzheimer’s disease, Lewy body dementia and Young-onset Alzheimer’s disease.

Image credit: Dementia Research Centre, Institute of Neurology, UCL
Image credit: Dementia Research Centre, Institute of Neurology, UCL

In-person meetings are currently held in multiple locations in central London and across the UK but there are plans to open a new, permanent home for the service close to the UCL Dementia Research Centre within the next couple of years. Currently, just 4% of people with a rare dementia diagnosis are thought to access support through RDS. But, with membership growing rapidly year on year, and the new Rare Dementia Support Centre exemplifying how best to support people affected by rare dementias, RDS aims to scale their impact by bringing their model of support to other facilities across the UK and beyond.

“The funding from the Galen and Hilary Weston Foundation has been transformational for RDS. These are devastating and isolating conditions about which it is hard for families to get informed advice or guidance, so the support offered by RDS makes a huge difference. The foundation has been a fantastic and consistent partner to RDS and The National Brain Appeal charity who fund our service. It has felt as if they were walking alongside us as we created and expanded the services to improve life for the many thousands of people affected by these under-recognised and under-supported dementias.”

– Professor Nick Fox, Director of the Dementia Research Centre, Professor of Clinical Neurology and RDS Co-Lead