People affected by rare dementias help design digital support platform

Clinicians and neuroscientists have been working with people living with rare dementias, and their carers and families, to design an innovative new online support platform, as part of the UCL-led Rare Dementia Support service. Rare Dementia Support (RDS) combines social, emotional and practical support with research and training, while striving to increase awareness about rare dementias. The unique world-leading service, led by the UCL Dementia Research Centre (part of the UCL Queen Square Institute of Neurology), aims to empower, guide and inform everyone affected by or at risk of a rare dementia in a space of mutual respect and community. Professor Nick Fox, Director of the UCL Dementia Research Centre, said: "The development of the RDS website into a powerful digital platform is part of our ambitious plan to extend and develop the RDS service, providing a high standard of digital support that reaches the millions of people globally who are affected by rare dementias." Between 5% and 15% of people living with dementia receive a diagnosis of a rare dementia, including Lewy body dementia, Familial Alzheimer's disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy, and primary progressive aphasia. This can bring with it a unique and complex set of challenges, including difficulties with language, vision, movement and behaviour. However, there is a widespread lack of understanding and a shortage of dedicated resources to support those affected.