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 can also access practical and emotional support for themselves.

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

More information can be found online at or by ringing 0203 325 0828.

Online information about FTD can also be found at the FTD talk website.

You can also speak to your doctor or nurse for advice. Admiral Nurses, who are dementia specialist nurses can be contacted on 0800 888 6678 or

For more information, you can also contact Alzheimer’s Research UK’s Dementia Research Infoline on 0300 111 5111 or

There are other support organisations that offer help and advice about dementia. For more information, visit our page ‘Support for people affected by dementia’.

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 December 2021 and is due for review in January 2024. it was written by Alzheimer’s Research UK’s Information Services team with input from lay and expert reviewers. Please get in touch if you’d like a version with references or in a different format.

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Dementia Research Infoline

Want to know more about dementia? Keen to get involved in research projects?

Contact the Dementia Research Infoline

9am-5pm, Monday to Friday

0300 111 5 111