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Dementia

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.

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

Dementia: information from Patient UK website

Dementia: information from NHS Choices

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

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

Lewy body dementia: information from NHS Choices


PubMed Medline search on Alzheimer's Disease

(see also Alzheimer's disease and Creutzfeldt-Jacob Disease)

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

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. 

Rare Dementia Support service.
Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses:
frontotemporal dementia (FTD)
posterior cortical atrophy (PCA)
primary progressive aphasia (PPA)
familial Alzheimer’s disease (FAD)
familial frontotemporal dementia (fFTD)
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.

Healthtalkonline  (UK site)
Hosts videos where people talk about their experiences of caring for someone with dementia as well as other dementia issues.

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. 

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.

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.

Created Out of Mind
This interdisciplinary team of scientists, visual artists, musicians, broadcasters, clinicians and carers aims to explore, challenge and shape perceptions and understanding of dementias through science and the creative arts, exploring what dementia means, challenging traditional definitions and common misconceptions, and unlocking what can be learn tabout art, consciousness and the brain from the experiences of people living with different dementias. Their short animated film about dementia ‘Do I see what you see?’ recreates the experiences of people living with Posterior Cortical Atrophy (PCA), a rare form of dementia which affects the visual areas of the brain, in a series of striking animations. The film was developed in partnership with Alzheimer’s Society and is supported by Wellcome.

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.

 

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