Jill is fundraising to support people with rare and devastating forms of dementia, and their families, friends and healthcare professionals. Rare Dementia Support is a service organised by Jill and the Dementia Research Centre.

Jill runs and co-ordinates specialist support group services for individuals living with, or affected by, a rare dementia diagnosis, throughout the UK and also connects people worldwide to information about living with one of the following conditions:

‒    Frontotemporal Dementia (FTD)
‒    Posterior Cortical Atrophy (PCA)
‒    Primary Progressive Aphasia (PPA)
‒    Familial Frontotemporal Dementia (fFTD)
‒    Familial Alzheimer's (FAD)

Having dementia brings many problems for those with the disease and their carers. Rare forms of dementia pose even more complex problems for those living with or affected by the diagnosis, and for their families, friends, and carers. Getting a diagnosis for an atypical form of dementia can be extremely difficult and often takes many years and then few facilities are appropriate to the specific needs. Carers find it hard to plan for the future and may feel very isolated.

Rare forms of dementia also often affect younger people, making these problems yet more challenging and devastating for those affected. Over 40,000 people in the UK develop dementia under the age of 65, and many experience atypical symptoms such as visual disturbances, problems speaking and understanding language, and behaviour and personality changes.

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