Rare Dementia Support

"Between 5% and 15% of people living with a dementia receive a diagnosis of a rare or young-onset dementia. The diagnosis of a rare dementia brings with it a set of unique and complex challenges. For example, 30% of people living with a rare dementia first receive an incorrect psychiatric diagnosis. There is a widespread lack of understanding about rare dementias and a shortage of dedicated resources to support people affected by rare dementias. "

"Rare Dementia Support is a UK based service provided by the UCL Dementia Research Centre (DRC). The Dementia Research Centre is a hub for world-class clinical research into dementias. The work of the DRC focuses on identifying and understanding the disease processes that cause dementias, researching the factors that influence these disease processes, and understanding how best to support people with dementia and their families. Rare Dementia Support is funded by the National Brain Appeal and run by small team based at the DRC. "


[contact@raredementiasupport.org, r.mckee-jackson@ucl.ac.uk - Regional Queries]