Living with frontotemporal dementia can be difficult. Younger people affected by the disease may have jobs and have family and financial responsibilities.

As well as supporting the person with FTD, it’s important that family and carers also access practical and emotional support for themselves.

Rare Dementia Support runs three national groups providing support and information for people with FTD, their families and carers: the Frontotemporal Dementia Support Group, the Primary Progressive Aphasia Support Group and the Familial Frontotemporal Dementia Support Group.

You can contact via telephone 020 3325 0828, leave a message and you will be referred to the most appropriate team member. Or you can email contact@raredementiasupport.org

Online information about FTD can also be found here www.raredementiasupport.org and at the FTD talk website https://www.ftdtalk.org/

There are other support organisations that offer help and advice about dementia. For more information, visit our page ‘Support for people affected by dementia’. You can also speak to your doctor or nurse for advice.

Support for people affected by dementia

This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.

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Order health information

Alzheimer’s Research UK has a wide range of information about dementia. Order booklets or download them from our online form.

This information was updated in January 2020 and is due for review in January 2022. It does not replace any advice that doctors, pharmacists or nurses may give you. Please contact us if you would like a version with references.

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