The Story of Rare Dementia Support

The first rare dementia support group was founded in 1994 as a nurse-led service designed to support people affected by one rare dementia – Frontotemperal Dementia (FTD). Based at the Dementia Research Centre (DRC), part of the Institute of Neurology at UCL in London, the work of the support group was closely linked to clinical practice at the DRC and designed to support DRC patients and their carers. The rare dementia support service consisted of meetings for people affected by the condition, talks from the team at the DRC, and individual telephone support provided by a specialist nurse.

Over the following 24 years, and with funding from the Myrtle Ellis Fund and the National Brain Appeal (NBA), additional support groups were established on the same basis, each one informed by and delivered by the specialist team at the DRC.

In 2015 the trustees of the National Brain Appeal formed an advisory committee for the support groups. The committee’s remit was to provide strategic direction and coordinated fundraising and to bring the five support groups together under the heading: Rare Dementia Support (RDS).