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The needs of people with young-onset dementia and their carers

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Madeline Armstrong, BSc (Hons), RMN, Dip Gerontology, Dip Counselling.

Admiral Nurse Team Leader, West Kent NHS and Social Care Trust, Sevenoaks, Kent

Dementia is a very distressing and cruel disease at whatever age it occurs. Many care needs are common to both younger and older people suffering from dementia, but this paper considers the particular needs of people with young-onset dementia and their carers. Cox and Keady (1999) define younger people with dementia as anyone under the age of 65 years, and particularly those in their third, fourth, fifth or sixth decade of life.

Kitwood (1997), one of the leaders in the field of dementia care, argued very clearly that we should recognise men and women who have dementia in their full humanity, looking first at the person and not putting them into a category devised for convenience or control. This paper will therefore describe people with this diagnosis as ‘people with dementia’ rather than ‘patients’.

Over the past decade there has been increasing awareness that dementia in younger people represents an important social and medical problem. The Alzheimer’s Society (2002) estimates that there are about 18 500 younger people with dementia in the UK. Dementia is a global, progressive, chronic condition that involves a severe decline in a person’s ability to think, remember and reason (WHO, 1992).

Although the symptoms of dementia are similar whatever a person’s age, younger people with dementia may have different needs. A younger person with dementia may, for example:

- Have dependent children

- Be in work at the time of diagnosis

- Have heavy financial commitments

- Find it difficult to rationalise losing skills at such a young age

- Find it difficult to access appropriate information and support (Alzheimer’s Society, 2002).

The case study in Box 1. illustrates some of the problems. The case studies described in this paper are based on real situations but names and some facts have been changed to protect confidentiality.

Onset and diagnosis

Early and accurate diagnosis has been highlighted as particularly important in the care of younger people with dementia (Walton, 1999). Anecdotal evidence suggests it sometimes takes years for a diagnosis to be given. Both people with dementia and their carers need to know the reasons for changed behaviours. They also need information to help them make appropriate legal, financial, occupational and welfare decisions. Benefits can be claimed, and pension rights will almost certainly be affected if a person with dementia retires because of ill health rather than because they are not doing their job properly.

There are sometimes children involved who are very distressed, perhaps feeling too embarrassed to bring their friends home to the house, and grieving for the parent they have lost. It can help a little if they understand that their parent is ill. Whiting (2002) argues that there should be openness in sharing information about the dementia diagnosis with the person and family that respects their individual choices and is sensitive and honest. It can be a relief to find out exactly what the problem is, so that they can explain it to other people, become adjusted to the problems, and make the most of life at that time.

Yale (1999) argues that, in the early stages, people with dementia can benefit from attending support groups and talking with others in the same position and coping with similar problems such as having to give up driving. Hawkins and Eagger (1999) report that support groups enable people to share strategies for daily management and keeping mentally active, such as using diaries, shopping lists and calendars.

Carers also need information and emotional support at this critical time. It can be devastating to learn the diagnosis, to see plans for retirement disappearing, to have financial worries and to be fearful of the future (Armstrong, 2001).

Often the onset of a dementia syndrome is insidious. Unusual or uncharacteristic behaviour is often ignored or put down to tiredness or stress. Dementia is not an illness that people expect to suffer in their forties or fifties (Walton, 1999). It is often difficult for carers to access help because the patient does not, or does not want to, recognise that there is anything wrong. Even when the patient sees the GP the problems might be put down to depression or stress or even malingering.

Once the problem is recognised a referral is usually made to either a psychiatrist or a neurologist. Probable diagnosis is made by a variety of investigations, including:

- Taking a full history of the presenting problems from both the person and the carer

- Routine blood screening, urea, electrolytes, and physical examination to eliminate other causes of confusion

- Compiling a detailed family history, which may reveal other family members who had similar problems at a similar age

- Assessing cognitive function by testing comprehension, orientation, concentration, language and motor skills and the ability to retain and recall information. Specialist neuropsychological testing may be carried out

- Carrying out magnetic resonance imaging (MRI), computerised axial tomography (CAT), or single photon emission computed tomography (SPECT) scans.

Types of dementia affecting younger people

Alzheimer’s disease

Alzheimer’s disease may be familial or sporadic. It is characterised by the formation of plaques and neurofibrillary tangles. It is characterised by a slow progressive decline bringing memory impairment, disorientation, impaired visuospatial abilities and motor skills, word-finding difficulties and dysphasia. Compared to the older population, younger people with dementia are less likely to have the diagnosis of Alzheimer’s disease, but those who do are more likely to have the familial type (Harvey, 1998a).

Vascular or multi-infarct dementia

This type of dementia is a result of impairment of the blood supply to the brain. It includes strokes, may be due to narrowing of the arteries, inflammation of blood vessels or haemorrhage. It is often called multi-infarct dementia. Frequently there is a sudden onset of cognitive impairment followed by a stepwise decline.

Lewy body dementia

In addition to the symptoms of Alzheimer’s disease, people with Lewy body dementia are likely to experience vivid hallucinations. The condition tends to fluctuate and the person may suffer from falls and develop some Parkinson-type symptoms. Many people with this type of dementia are very sensitive to neuroleptic medication, which can lead to severe side-effects and even death.

Frontotemporal dementia including Pick’s disease

Harvey (1998b) states that the symptoms of this group of diseases are quite different to those seen in Alzheimer’s disease. This type of dementia frequently has a very slow and insidious onset. The first symptoms may be a subtle change in personality and behaviour. The person may withdraw socially, begin to neglect their personal appearance and behave out of character. Obsessional symptoms are quite common and the person may become constantly irritable. Language and speech are frequently affected, gluttony, lack of insight, and sexual disinhibition are other symptoms. As time goes on the condition becomes more global and towards the end the symptoms may resemble other types of dementia.

Other types of dementia

Other types of dementia that may affect younger people include:

- Prion diseases such as Creutzfeldt-Jakob disease

- Dementia as a result of multiple sclerosis, Parkinson’s and Huntington’s disease or HIV-related dementia

- Dementia in people with Down’s syndrome, which may also develop at an early age.

Box 2 presents a case study illustrating the problems associated with frontotemporal dementia.

Genetic issues

Duncan (1998) advises that an estimated 5-10% of all cases of Alzheimer’s disease have a genetic component. Familial Alzheimer’s disease (FAD) does not differ pathologically or clinically from sporadic Alzheimer’s disease but it usually has a much younger age of onset, with people showing signs of the disease from their mid-thirties upwards. With the exception of the mutation on chromosome 19, FAD with mutations on chromosome 14, 1 and 21 is an autosomal dominant condition. This means that those people carrying the mutation will develop the disease and there is a 50% chance of passing the disease on to offspring. This obviously causes enormous concerns for families affected. The uncertainty can lead to anxiety, depression, behavioural disturbances and lowered self-esteem. Children are more likely to be involved and family finances may be affected. Genetic testing is not straightforward due to the number of chromosomes that may be involved. The Alzheimer’s Society suggests that if a person has three or more close family members with young-onset dementia, they may wish to be referred to a specialist centre for genetic testing.

Carer issues

Being a carer of someone with young-onset dementia has particular problems. There may be genetic implications for any children. There are certainly many financial implications. The person with dementia will probably have to leave their employment prematurely but the main carer may also have to leave employment to care for their loved one. This not only brings financial problems, but also loss of the companionship and interests they may have enjoyed. The person with dementia may be still sexually active, but the carer may find this difficult when the person has changed in so many ways. The carers of younger people with dementia may suffer intense feelings of grief, especially as the condition may deteriorate more quickly than in older people with dementia. Both the person with dementia and their carer may feel robbed of their future.

There are frequently young children and adolescents to consider. It is very difficult for them to adjust to the loss of the father or mother they once knew and at the same time they may be embarrassed by their behaviour, or be frightened of their aggression. This in turn brings further stress to the main carer.

Traditional ways of providing respite for carers are often not available for younger people with dementia. Younger people still have energy, they may enjoy walking and sport. Day care is normally designed for older people and is not suitable for this generation, with a few notable exceptions. There are only a few residential care homes providing respite for this age group throughout the country.

Harvey (1998a) found that more than half of the carers in his study had such a degree of distress that they could be considered to have a formal psychiatric illness. He argued that these high levels of burden suggest that an assessment of the care-giver themselves should be an integral part of the overall assessment process. It is suggested that support for them could be provided by the Admiral Nurse Service, a specialist nurse scheme which provides information, advice and support to carers of people with dementia.


As an Admiral Nurse I find caring for people with young-onset dementia and their carers immensely rewarding but very stressful. The lack of resources makes you feel quite impotent at times. The lack of understanding from both the public and professionals makes life very difficult both for younger people with dementia and their carers. This paper has set out to address this lack of understanding in the hope that this will result in a better quality of care provision for people with dementia and their carers.

Useful organisations

- The Alzheimer’s Society is a care and research charity for people with any form of dementia and their carers; Alzheimer’s Society, Gordon House, 10 Greencoat Place, London SW1P 1PH. Tel: 020-73060606. Fax: 020-7306 0808. Email: Website:

- for dementia is a national charity whose aim is to work in partnership with the NHS and others to promote and develop new Admiral Nurse teams as well as to support and sustain the practice of existing Admiral Nurses: for dementia, 6 Camden High Street, London NW1 0JH. Tel: 020-78747210. Fax: 020-7874 7219. Email: info@ Website:

- The Admiral Nurse Service was established specifically to meet the needs of those who care for people with dementia. Admiral Nurses are specialist dementia nurses who understand the difficulties facing people who look after a relative or friend with memory problems. They also have a consultancy role, working with other professionals and offering training. The service was set up as a result of the experiences of family carers. The nurses are named after Joseph Levy, who had dementia and was knows as ‘Admiral Joe’ because of his keen interest in sailing.

Commentary: the Alzheimer’s Society says younger people with dementia and their carers deserve age-appropriate services

Mike Ellison, Younger People with Dementia Project Officer, Alzheimer’s Society.

The Alzheimer’s Society believes that all people with dementia should receive quality services and support to meet their individual needs.

Younger people with dementia all too often find it difficult to access suitable support and services.

In 1996, the society could identify only around 20 specialist services for younger people with dementia in the UK. So it adopted a Charter for Younger People with Dementia and their Carers, which identified key areas for development to improve the quality of life of these clients and their families. It called for:

- Early diagnosis, assessment and referral

- Access to specialist services

- Adequate financial support

- Good employment practice

- Education, training and information.

The number of projects has greatly increased since then, with 120 projects now listed on the Society’s Younger People with Dementia Services database serving the clients, their families, carers and other people who work with them.

The Younger Person’s Network enables individuals affected by early-onset dementia to be linked with others in similar circumstances to exchange experience and support.

The services database maps out what is available specifically for younger people with dementia around the country. These include counselling services, hospital assessment and respite, dedicated day care, nursing care, day clubs, development workers, carers’ support groups, independent support housing, dedicated diagnosis and clinical management, supported horticultural work, outreach, carers’ education, befriending and advocacy.

Carers’ contacts are trained and skilled volunteers who are able to offer a listening ear and understanding to the carers of younger people. They are usually former carers of a younger person and they are available to take calls on a one-off or ongoing basis from people who need to talk about any difficulties they may be experiencing.

The inclusion in the 1991 National Service Framework for Older People of the action point relating to younger people with dementia has given fresh impetus to development of age-appropriate services for them in England and Wales.

Standard Seven of the NSF states that, by April 2004, ‘The NHS, and councils, should: review current arrangements, in primary care and elsewhere, for the management of dementia in younger people, and agree and implement a local protocol across primary care and specialist services, including social care.’

An important role for the society and others in the near future will be to encourage and map service developments and the implementation of local National Service Framework protocols.

Further information about younger people with dementia is available from:

Alzheimer’s Society publications on younger people with dementia:

Younger People with Dementia: A review and strategy, 1996.

Younger People with Dementia: Reading list, 2002.

Younger People with Dementia: A guide to service development and provision, 2001

Information sheet: Younger People with Dementia, 2001.

Further information is available from the society’s website at

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