Younger people with dementia

There are over 18,000 people under the age of 65 with dementia in the UK. Although the symptoms of dementia may be similar whatever a person's age, younger people may have different needs and their problems require a different approach.

Types of dementia in younger people

Research by Harvey (1998) estimates that there are over 18,000 younger people with dementia in the UK. 'Younger people with dementia' is a term that includes anyone diagnosed with dementia under the age of 65. People also use the terms 'early onset dementia', 'young onset dementia', or 'working age dementia'.

Only around one-third of younger people with dementia have Alzheimer's disease. Other common forms of dementia in younger people are:

Vascular dementia, which occurs when the blood vessels in the brain are deprived of oxygen
Fronto-temporal dementia, including Pick's disease. This is caused by damage to parts of the brain that control behaviour, emotions and language
Dementia with Lewy bodies, which is caused by the build-up of tiny protein deposits in the brain
Alcohol-related brain impairment, which is often called Korsakoff's syndrome and can occur in people who have regularly consumed a large amount of alcohol. It is caused by a lack of thiamine (vitamin B1) in the body, which affects the brain and nervous system
Rarer forms of dementia such as prion disease (eg CJD), or inherited conditions that can cause dementia (eg CADASIL). Around one-fifth of younger people with dementia have a rarer form of the condition.

People with other conditions, such as Parkinson's disease, multiple sclerosis or Huntington's disease, may also develop dementia as part of their illness. People with Down's syndrome and other learning disabilities can also develop dementia at an early age. The Alzheimer's Society produces a range of information sheets on the various causes of dementia. Please see list at the end of this page.

Age as a barrier to care

Most people think of dementia as a condition affecting only older people. However, dementia can affect anyone, at any age. There is little awareness or understanding of people who develop dementia at an early age, which can make it very difficult for them to get proper support. There are sometimes significant age-related barriers for younger people trying to get access to dementia services. Many dementia care services have a minimum age requirement of 65, and are not available to younger people. Even if services are open to younger users, they may not be appropriate to their needs. Younger people often feel that they are made to 'fit in' to a service, rather than the service fitting their needs.

If no specialist services exist, younger people with dementia can find themselves lost between services, none of which will accept responsibility for their care.

Diagnosis

Getting an accurate diagnosis of dementia can take a very long time for younger people, often due to lack of awareness of dementia in people under 65. Medical professionals often misdiagnose younger people as being depressed, or as suffering from the effects of stress.

If a GP decides that specialist assessment is required, there can be confusion over the most appropriate consultant to refer to. Specialists in old age psychiatry are usually responsible for older people with dementia, but there is no such specialty for younger people. There are very few specialist diagnostic services or named consultants for younger people with dementia. Old age psychiatrists, neurologists, and adult psychiatrists all receive referrals for younger people. This means that in one area, younger people with dementia can receive very different levels of support from different doctors and professionals.

Specialist services

It is important that younger people with dementia have access to a range of specialist services, even at the time of diagnosis. A small number of areas have named consultants with responsibility for younger people with dementia. A specialist diagnostic service should help people get access to care more quickly and easily. The Alzheimer's Society is campaigning for similar services in all areas.

Younger people also need specialist services after diagnosis. Even if dementia services accept younger users, the type of care they provide may not be appropriate. The needs of younger people with dementia and their carers are not just related to age. In many cases, people's fitness, activity and relationships matter as much as their age and diagnosis. In general, younger people with dementia are more likely to:

Be in work at the time of diagnosis
Have dependent children or family
Be more physically fit and active
Have heavy financial commitments, such as a mortgage
Have a rarer form of dementia.

Younger people may have different concerns and interests to older people. A service set up for people of a different generation, where activities are planned for older and less physically active people, is unlikely to meet the needs of younger people. Younger people with dementia require specialist services able to meet their complex needs.

The number of specialist services is growing as more people come to understand the needs of younger people with dementia. In 1996 there were about 20 services in the UK that offered specialist support, and in 2004 there were over 120. While this figure is encouraging, progress is slow. Provision of services for younger people is variable around the country. Some regions still have few, if any, services.

The Alzheimer's Society maintains a database of services that provide specialist support to younger people with dementia and their families. For more information, go to www.alzheimers.org.uk/ypwd or contact the Alzheimer's helpline.

For more information on services for younger people with dementia, see the Alzheimer's Society's booklet Younger people with dementia: A guide to service development and provision.

Support from the Alzheimer's Society

Many branches of the Alzheimer's Society provide specialist support for younger people with dementia. Even if they do not, they can usually advise younger people on local services, and direct them to any specialist services that are available.

The Society can also put younger people with dementia, their families or carers in contact with others in their local area, or in similar circumstances. Because dementia in younger people is comparatively rare, it can be difficult to find other people who understand the situation. For more information on the Society's contact networks, contact the information officer for younger people with dementia (see below) or the Alzheimer's Helpline.

The Alzheimer's Society's website has a dedicated section on younger people with dementia. Go to www.alzheimers.org.uk/ypwd. The website also hosts an online discussion group called Talking Point, which has a dedicated group for younger people. To join the discussion, go to www.alzheimers.org.uk/talkingpoint/discuss.

The Society can also provide support and information for younger people with dementia and their carers in a number of areas, including:

Work

Some people with dementia may want to continue working for some time after diagnosis, or they may wish to take early retirement if this is appropriate. Carers may also want to continue working, or may be concerned about giving up work to care full time. The Society can advise on some aspects of work and finances, but people with dementia and carers might need specialist advice. This should be available from a disability employment adviser at the local Jobcentre Plus, or from the local Citizens Advice Bureau.

Benefits

Younger people with dementia and younger carers should ensure that they are receiving the benefits to which they are entitled. The Society's information sheet Benefits may be helpful.

Driving

Some people with dementia are able to drive safely for some time after their diagnosis, but there will be a point when they will have to stop driving. For many people with dementia, the decision to stop driving can be difficult: the Alzheimer's Society's factsheet, Driving and dementia may be helpful.

Children

Younger people with dementia often have dependent children when they are diagnosed. It is important that children understand the condition, how it affects their parent and what changes to expect. Every child is different and will react in their own way. The Society's carer's advice sheet Children and dementia and may be helpful.

Support for people with non-Alzheimer's dementias

Dementia can occur as a symptom of a number of conditions, including Down's syndrome or multiple sclerosis. Many of the relevant voluntary organisations provide good information on dementia as it affects people with these conditions. In addition, the Alzheimer's Society supports all people with dementia, whatever their age or diagnosis.

Useful organisations

Pick's Disease Support Group

8 Brooksby Close
Oadby
Leicester
LE2 5AB

Telephone: 0845 458 3208
Website: http://www.pdsg.org.uk/

The Pick's Disease Support Group supports people with fronto-temporal dementia and other forms of dementia, including alcohol-related brain impairment. It provides information and advice, publishes a range of booklets, and has a network of local contacts. It also supports professionals involved in the care of people with these forms of dementia.

CJD Support Network

Gillian Turner
PO Box 346
Market Drayton
Shropshire
TF9 4WN

Helpline: 01630 673 993
Email: info@cjdsupport.net
Website: http://www.cjdsupport.net/

The CJD Support Network supports people with prion diseases, including forms of Creutzfeldt-Jakob disease (CJD). It provides a range of information on the various forms of prion disease, and works with professionals to improve the level of care provided for people with these conditions.

Alzheimer's Society's information officer for younger people with dementia

Devon House
58 St Katharine's Way
London E1W 1JX

Telephone: 020 7423 3500
Email: ypwd@alzheimers.org.uk

The Alzheimer's Society website also has a dedicated section for younger people with dementia. Go to www.alzheimers.org.uk/ypwd

Alzheimer's Society