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March 04, 2020 Wednesday 01:36:32 PM IST

People affected by rare dementias help design digital support platform

Leadership Instincts

As part of the UCL-led Rare Dementia Support service, 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. Rare Dementia Support (RDS) combines social, emotional and practical support with research and training while striving to increase awareness about rare dementias.

Between 5% and 15% of people living with dementia receive a diagnosis of 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.

Working with people living with rare dementias, their carers, and families, the team at UCL has developed a new website that provides:

Access to information tailored support, and contact with others affected by similar conditions

Education and training for healthcare and other professionals who want to know more about rare dementias

Support for research into the experiences of people living with rare dementias

People living with rare dementias have informed every step of the development process: from website layout, accessibility and content to design, fonts and colours.

The digital platform is supported by Selfridges Group Foundation and Selfridges digital and creative teams, and the RDS is funded by the National Brain Appeal. The service stems from a single support group founded in 1994 for one rare dementia – frontotemporal dementia – before growing over the years thanks to numerous supporting charities and academic and clinical leadership at the UCL Queen Square Institute of Neurology. The RDS now provides services for over 2,000 members across six rare dementia groups, with 16 support groups in London and 27 more across the region.

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