The term ‘dementia’ is a group of brain diseases that cause a long-term, gradual decrease of cognitive ability. It damages the nerve cells in the brain so messages can’t be sent to and from the brain effectively, which prevents the body from working normally. PCA is just one of these atypical forms of dementia which can make it hard to judge distances, depth, movement and can also affect reading and writing skills.

Rarer forms of dementia account for between 5% and 15% of all dementia cases in the UK. The Rare Dementia Support (RDS) service is organised by the Dementia Research Centre at The National Hospital, and runs specialist support group services for individuals living with, or affected by, a rare dementia diagnosis. The service offers specialist support for different types of younger-onset dementia including: posterior cortical atrophy (PCA);  primary progressive aphasia (PPA); familial Alzheimer’s disease(FAD); frontotemporal dementia (FTD); familial frontotemporal dementia (fFTD); lewy body dementia (LBD). The RDS Fund raises money to support these people, their families, friends and health professionals.

Over the past three years The National Brain Appeal has raised £150,000 a year to provide current levels of support for the Rare Dementia Support service – this includes meetings in London and other regions, support and admin staff and all other associated expenses. Over 3,000 people are currently on support group databases receiving emails and newsletters with around 1,000 attendees across the meetings.

There are over 850,000 people living with dementia in the UK and this is set to rise to over one million by 2021. This is why we are committed to increasing our fundraising target this year to £250,000, and to £350,000 in 2021-2022. This will help to develop and extend the RDS service, and realise our vision of ensuring that everyone affected by a rare dementia will have access to specialist support and information, as well as contact with other people with a similar condition.

We will also be funding the world’s first Rare Dementia Support Centre – a capital project of around £4-£7million.