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. 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. Caused by the build-up of tiny protein deposits in the brain.

• Alcohol-related brain impairment, which is often called Korsakoff’s syndrome. 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 (e.g. CJD), or inherited conditions that can cause dementia (e.g. 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.

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 are very few specific 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.

Development of The Lakes at Barons Park followed a period of extensive research which made a strong case for the specific recognition and provision in service planning.

• Dementia under the age of 65 is rare and is less likely to be specifically recognised or addressed by services.

• Dementia has an impact on the whole family. However, in families where someone develops dementia under the age of 65, there are specific needs to be addressed. Younger people are more likely to have children and financial commitments.

• There is a higher prevalence of the rarer dementias in younger people.

• The emotional impact of developing dementia at a young age needs to be addressed. For both the person with dementia and their families the diagnosis has a dramatic effect on future life plans and expectations.

• Services should provide an opportunity for mutual support in an environment where people feel at ease. Where services are designed for older people, they often lack such opportunities for younger people who can feel isolated.

• Younger people with dementia, their families and friends need different forms of information and emotional support.

• The issues facing younger people with dementia and their families are complex and may change quickly. There is a need for ongoing specialist involvement and monitoring.

This information is an extract from - Younger people with dementia: a guide to service development and provision, which is available to buy from the Alzheimer's Society.

Further information about the effects of dementia in younger people is available via the Alzheimer’s Society at www.alzheimers.org.uk