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Younger People With Dementia

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

A fact sheet for Younger people with dementia is available here

 

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.

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.

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.

Specialist Services

It is important that younger people with dementia have access to a range of specialist services, even at the time of diagnosis. 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.

Support from the Alzheimer’s Society

The Alzheimer’s 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 website 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.
Go toWelfare benefits

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 Living with Dementia factsheet Will I still be able to drive? may be helpful.
Go toWill I still be able to drive?

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 Explaining to children and its factsheet for children, Understanding dementia, may be helpful.
Go toExplaining to children
Go to
what is dementia

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.

The information on this page is taken from the Alzheimers Society Information Sheet, please see their site for further information and resources

 

©2016 Somerset Partnership NHS Foundation Trust

Related Links

Dementia

Alzheimer’s Society

All enquiries regarding Younger People with Dementia in Somerset needs to be directed to:

Alzheimer's Society, Magnolia House, 56 Preston Road, Yeovil BA20 2BN.  Contact number 01935 473597.

 

The Alzheimer’s Society website also has a dedicated section for younger people with dementia.

  The following information sheets are available from the Alzheimer’s Society:

 

* What is vascular dementia?

* What is fronto-temporal dementia (including Pick’s disease)?

* What is dementia with Lewy bodies?

* What is Korsakoff’s syndrome?

* What is Creutzfeld-Jakob disease (CJD)?

* Learning disabilities and dementia

* Rarer causes of dementia

Contact networks for younger people with dementia
Many younger people with dementia and younger carers wish to speak to others in a similar situation. The Alzheimer’s Society has set up a number of services to help people make contact with others who understand.

 

Other links

World Fellowship for Schizophrenia & Allied Disorders

Schizophrenia.com

Longforth House
Wellington

Forget-me-not Centre, Swindon