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

What care and support is available for people affected by frontotemporal dementia (FTD)?

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. Contact details can be found online at raredementiasupport.org

Shaheen

The Rare Dementia Support Network were vital in supporting me following my mum's diagnosis of FTD.

- Shaheen

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

You can also speak to your doctor or nurse for practical and medical advice.

Admiral Nurses, who are dementia specialist nurses can be contacted on 0800 888 6678 or helpline@dementiauk.org

There are other support organisations that offer help and advice about dementia.

For more information, contact Alzheimer’s Research UK’s Dementia Research Infoline on 0300 111 5111 or infoline@alzheimersresearchuk.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’.

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 2024 and is due for review in January 2026. 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

infoline@alzheimersresearchuk.org