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Alzheimer's Disease

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.

Alzheimer's Disease: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Alzheimer's Disease: information from the NHS website

Alzheimer's Disease: information from Patient UK website

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

Posterior cortical atrophy:  Information from the Alzheimer's Society

PubMed Medline search on Alzheimer's Disease

Support Groups

Alzheimer's Society
The 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. 

Familial Alzheimer's disease support
Rare Dementia Support runs specialist support services for individuals living with, or affected by familial Alzheimer’s disease (fAD).  The website aims to provide information and support to people with fAD, their families, friends and healthcare professionals. The fAD support group is for families affected by autosomal dominantly inherited familial Alzheimer’s disease due to mutations in the presenilin 1 (PSEN1), presenilin 2 (PSEN2) or amyloid precursor protein (APP) genes or APP duplications. The group was formed in the UK in 2010 to provide these families with information, advocacy and opportunities to meet each other.  

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.

Rare Dementia Support service.
Rare Dementia Support runs specialist support services for individuals living with, or affected by familial Alzheimer’s disease (FAD). 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.

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.

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. (Irish site)

Alzheimer Society of Canada
National society website 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. (Canadian site)

Alzheimer's Association
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. (US site)

Posterior Cortical Atrophy Support Group
This site aims to provide information and support to people with PCA, and their families, friends and healthcare professionals.

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.

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

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.

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 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.

 

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