UCL Queen Square Institute of Neurology


Frontotemporal Dementia (FTD)

Frontotemporal Dementia: information from the NHS website

Frontotemporal Dementia: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Frontotemporal Degeneration: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Pick Disease of the Brain

Support Groups

Rare Dementia Support service
Rare Dementia Support is a unique, world-leading service providing support, guidance and information to everyone affected by or at risk of a rare dementia, in a space of mutual respect and community. It builds on the pioneering research of the UCL Dementia Research Centre (DRC) and its expertise in young-onset, inherited and unusual dementias. With the generous support of the Selfridges Group Foundation and expertise from their digital and creative teams, they have designed a new, innovative online support platform. People living with rare dementias informed every step of the development process: from website layout, accessibility and content to design, fonts and colours. Frontotemporal dementia (FTD) is a group of dementias which mainly affects personality and behaviour or language and speech, depending on which areas of the brain are affected. Familial frontotemporal dementia (fFTD) is an inherited form of frontotemporal dementia (FTD). This site aims to provide information and support to people with FTD and fFTD, and their families, friends and healthcare professionals.

Alzheimer's Society
Offers information and advice to people with Alzheimer's disease and their carers.  Information sheets, books and videos on all aspects on caring for someone with dementia are available.

The Association for Frontotemporal Degeneration (AFTD)
The mission of this non-profit organization is to improve the quality of life of people affected by FTD and drive research to a cure. They work to promote and fund research toward diagnosis, treatment and a cure; stimulate greater public awareness and understanding; provide information and support to those directly impacted; promote and provide education for healthcare professionals; advocate for research and appropriate, affordable services. (US site)

Dementia UK
This charity provides specialist dementia support for families through their Admiral Nurse service. These specialist dementia nurses work alongside people with dementia and their families, giving them the one-to-one support, expert guidance and practical solutions they need, and that can be hard to find elsewhere.

National Institute for Health and Care Excellence (NICE): supporting people with dementia
NICE clinical guidelines advise the NHS on caring for people with specific conditions or diseases and the treatments they should receive. The information applies to people using the NHS in England and Wales.

Carers UK
A national charity for carers, providing information and advice from benefits to practical support.

Age UK
Has advice on a range of topics, including advance care planning, benefits and choosing a care home, as well as information on local activities and services for those with dementia. It runs a free national helpline.

The Carers Trust
If you are looking after someone with dementia, it's important that you know how to get help and support for yourself as well. This is a good place to start looking for information and advice on how to get help and support, and even a break from caring.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.

Social media for people with dementia and their carers

Online forums are a great way to share your experiences of caring for someone with Alzheimer's Disease, as well as reading what others are going through. If there's a particular issue you are struggling with, the chances are that someone else has had the same experience.

Talking Point is the Alzheimer's Society's forum. It has people with Alzheimer's Disease sharing their information and advice, and supporting each other.

Carers can also turn to online communities on the Carers UK forum.

Carers books on prescription

Reading Well Books on Prescription for carers offers support for relatives and carers of those diagnosed with Alzheimer's Disease. The books are available for anyone to borrow for free from their local library. Read more about the Reading Well Books on Prescription for carers and relatives.