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The world’s first Rare Dementia Support centre
Rare Dementia Support (RDS) runs regular, specialist support groups in London, regionally and online, as well as access to contact networks and reliable information and advice for people living with or at risk of inherited, atypical and young onset dementias.
The National Brain Appeal has supported RDS since the first meetings in 1994. The service has expanded substantially in recent years and the charity’s campaign has raised over £9m to create a permanent home for the service – the world’s first centre of excellence for rare dementias.
The Rare Dementia Support Centre is set to open in early 2026 and will exemplify how best to support those living with a rare dementia.
It aims to:
1. Support: guide and empower people living with rare dementias and their families.
2. Educate and train professionals (such as speech therapists, nurses, physiotherapists, opticians and GPs) who work with people living with rare dementias.
3. Research the impact of support services on people living with rare dementias: both for people with a diagnosis, and for their carers and families.
A welcoming, homely space
The centre will be set in two neighbouring townhouses in Woburn Square, just a few minutes’ walk from Queen Square. The buildings were purchased in 2024, and are being remodelled to provide a welcoming, home-from-home environment.
A substantial kitchen will sit at the heart of the centre, with lounge areas for larger group discussions and smaller rooms for conversations between individuals, families and advisers and therapists. There will also be dedicated spaces for physical, artistic and cultural activities. IT pods, booths, and audiovisual equipment will enable phone consultations, live streaming and recording to increase the reach of meetings and training sessions. The centre
will lead in the provision of education on rare dementias for families, as well as health and social care professionals.
Work on the building, a short walk from the National Hospital and the Dementia Research Centre at UCL Queen Square Institute of Neurology, is beginning in April, with doors expected to open in spring 2026.
All donations to Bernard’s challenge appeal will go towards staffing, developing services and helping to fund the activities offered to people at the centre.
More information about The National Brain Appeal’s campaign and the importance of the centre at UCL can be found here and here. To find out more about Rare Dementia Support please go to www.raredementiasupport.org
“The work the Rare Dementia Support Centre does, and the concept of a support system for families, is essential. Often the person who has dementia is not aware of the impact, and that’s the tougher part of the equation for the family. And, the fact the RDS team train people and raise awareness across the country as to what to look out for in people with rare dementias, is very valuable.”
Caroline Bunting