UCL Queen Square Institute of Neurology



Medline NLM term definition: a degenerative organic mental disease characterized by progressive brain deterioration and dementia. The disease was originally described as DEMENTIA, PRESENILE occurring in persons under the age of 65 (as opposed to DEMENTIA, SENILE with onset at or after 65); however, onset may occur at any age. There is no pathophysiological nor clinical distinction between the two stages of onset of Alzheimer's. Women appear to be affected twice as frequently as men. It is characterized pathologically by the triad of SENILE PLAQUES, NEUROFIBRILLARY TANGLES, and NEUROPIL THREADS.

See also Alzheimer's disease, Creutzfeldt-Jacob Disease, Lewy Body Dementia.

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

Dementia: information from Patient UK website.

Dementia: information from the NHS website.

National Institute on Aging: US site from National Institute of Health. Aimed at older adults.

Posterior cortical atrophy: information from the Alzheimer's Disease Society.

The Many Faces of Dementia This free online course was developed by Dr Tim Shakespeare of UCL's Dementia Research Centre. The course provides a unique insight into dementia through the stories, symptoms and science behind four less common diagnoses of dementia.

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. Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of six rare dementia diagnoses:
frontotemporal dementia (FTD)
posterior cortical atrophy (PCA)
primary progressive aphasia (PPA)
familial Alzheimer’s disease (FAD)
familial frontotemporal dementia (fFTD)
Lewy body dementia (LBD)
They provide regular support group meetings, newsletters, telephone contact networks, websites and access to information and advice for people affected by these five rare dementia conditions.

Alzheimer's Society
This is the leading dementia charity. Its website contains essential information on dementia and Alzheimer's disease, including how to live well with the disease and how to find help near you. Offers information and advice to people with Alzheimer's disease and their carers. 

Dementia UK
Dementia UK is a national charity that aims to improve the quality of life for people with dementia. It offers advice and support to families who are living with dementia through its Admiral Nurses, who are registered nurses and dementia experts. Dementia UK and its Admiral Nurses also provide training for professionals who work with people with dementia.

CANDID (Counselling and Diagnosis in Dementia)
National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, England
Tel: 020 7829 8772
Fax: 020 7209 0182
Email: candid@dementia.ion.ucl.ac.uk
Offers support, information, advice and education for anyone caring for younger people with dementia. Has a helpline and an excellent internet web site. The web site includes a virtual carer support group; CANDID young onset dementia resources database; CANDID e-mail list (which promotes sharing of information between carers and also information professionals); information leaflets to download; dementia resource centre; access to the Pick's disease support group; announcements and events.

The London Centre for Dementia Care
This organisation was established in 1998 and is hosted by University College London.

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.

NICE (National Institute for Health and Care Excellence)
This organisation supports people with dementia and their carers in health and social care.

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.

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

Alzheimer's Research UK
Carries out dementia research, but it also answers questions about dementia and dementia research – including how you and your loved ones can get involved. The charity's infoline can provide help and guidance.

Alzheimer Scotland-Action on Dementia
Aims to improve public policies for people with dementia and their carers in Scotland and to provide and secure the provision of high quality services both for people with dementia and for their carers in Scotland. 

Western Alzheimer Foundation (Irish site)
Promotes awareness through consultation and support group meetings. Gives practical help with a home support service.

Alzheimer Society of Canada (Canadian site) 
National society web page with the latest information on Alzheimer disease, care, research and Society programs to help Canadians affected by Alzheimer disease. Links to local (Canadian) and international organisations.

Alzheimer's Association  (US site)
This USA based charity gives information and assistance on issues related to Alzheimer's disease. Website includes links to regional "chapters" for the USA. Funds research and has an extensive information service.

Music for dementia
This is a great website for anyone who works with or cares for people living with demntia. If you are running a dementia friendly music event or are looking for one, they're all here, as well as suggestions about ways of engaging with music. To ensure every person living with dementia has access to music, they are taking the lead by creating a taskforce of stakeholders from across the music and dementia fields to embed music into dementia care pathways.

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.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

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 dementia, 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 dementia sharing their information and advice, and supporting each other.

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


Dementia books on prescription

Reading Well Books on Prescription for dementia offers support for people diagnosed with dementia and their relatives and carers. GPs and other health professionals can recommend titles from a list of 25 books on dementia. The books are available for anyone to borrow for free from their local library.

This service is also available to people living without a formal diagnosis, who may be worrying about symptoms of dementia.

Read more about the Reading Well Books on Prescription for dementia titles.