Young onset dementia: Key issues
How common is dementia in adults under 65?
Dementia can affect people as young as 30, although this is extremely rare. Most younger people with dementia are middle aged: in their 50s and early 60s. The term ‘young onset dementia’, or 'early onset dementia', or 'working life dementia' refers to people diagnosed with dementia under the age of 65.
You can’t have dementia, you’re too young.A GP quoted in an Alzheimer’s Society report (2008)
In 2010 there were thought to be 64,037 people under 65 with dementia in the UK compared with just 16,737 in 1998. The majority of those affected in this younger age group – 70 per cent – are men. Younger people with dementia make up 8 per cent of the total number of people with dementia (ART 2010).
The chances of developing dementia before 65 are relatively small. Men aged between 30 and 59 have a 0.16 per cent chance; for women it is 0.09 per cent. The chances increase slightly once a person reaches 60. Men aged between 60 and 64 have a 1.58 per cent chance of developing dementia; for women it is 0.47 per cent. The chances of developing dementia are highest for people between 90 and 94 (32 per cent) (ART 2010).
What are the risk factors?
We do not know fully the risk factors for developing young onset dementia. For many people, it just seems to develop. In a proportion of younger people, there is a familial link. Individuals who have at least one close relative with dementia have a two to four times greater risk of developing dementia before the age of 65, most commonly Alzheimer’s disease. The effect is stronger for those where the close relative had young onset dementia.
A second major risk factor is Down’s syndrome. Up to three-quarters of people with Down’s syndrome over the age of 50 will develop dementia (Baldwin and Murray 2003). This problem is increasingly evident as people with Down’s syndrome are living longer now.
In addition, people from black and minority ethnic groups under the age of 65 years seem more likely to be diagnosed with dementia.
Other forms of dementia common in younger people
Younger people are more susceptible to other, more unusual forms of dementia (that is, not Alzheimer’s disease which is the most common type). Some examples are fronto-temporal dementia (including Pick’s disease), Korsakoff’s syndrome (a type of alcohol-related dementia) and HIV-related dementia.
Each form of dementia has characteristic symptoms, as well as more general symptoms of dementia. For example, fronto-temporal dementia affects the frontal lobe and/or the temporal parts of the brain, which deal with behaviour, emotional responses (including judgement) and language skills. If this part of the brain is damaged, a person may start to display inappropriate, disinhibited behaviour, such as swearing loudly and often. People with Lewy body dementia may experience visual hallucinations, irregular sleep patterns and falls. If care staff know this sort of information, they are far better equipped to respond to the particular needs of the individuals they are working with.
Dementia can be more severe in a younger person and is often associated with physical symptoms and rapid progression. This is particularly the case with rare forms of dementia such as Creutzfeldt-Jakob disease (CJD) and HIV-related dementia.
To find out more about these and other forms of dementia go to the Alzheimer’s Society website and see its factsheet on Younger people with dementia.
Different life circumstances
Typically, people who are diagnosed with young onset dementia are in very different circumstances in life from older people with dementia. They are more likely to be in paid employment, have young or teenage children living at home, be otherwise fit and healthy, and have significant financial and other commitments, such as caring for an older parent. All these factors influence the experience of living with dementia, and mean that services need to work hard to be accessible and appropriate for a younger person and their family.
How hard is it to get help?
Because it is relatively rare for younger people to be diagnosed with dementia, services and interventions tend to be geared towards people aged 65 years and over. This means that often it is very difficult for younger people and their families to access support, especially at the beginning.
For example, people with dementia are usually seen by an old age psychiatrist, but if the person is under 65, it may not be clear which specialist they should see. Will the local old age psychiatrist be willing to see the person or should it be the neurologist? Accessing services can also be complicated. Which social services team will be responsible for ongoing care management – one that deals with mental health among working age adults or one that works with older people with dementia? Can a younger person with dementia attend a day facility for older people? Many younger people with dementia and their families experience great frustration as they work through these bureaucratic hurdles.
Activities too in a range of settings (care homes and day facilities) are often planned with much older and more physically frail people in mind. An activity that is suitable for a 90-year-old woman with limited mobility – say, a discussion group – may be completely inappropriate for an active 50-year-old man with fronto-temporal dementia who wants to walk all day, every day.
Another barrier younger people with dementia may face, which can make accessing services even harder, is to not have their diagnosis recorded in their care records, as and when they are admitted to hospital, either from home or a care home. The Care Quality Commission (2013) reports that unrecorded cases of dementia were three times more common in people between the ages of 18 and 54 compared with those over the age of 75. The Commission also found that ‘people in this age group are also more likely to stay in hospital longer, be readmitted and die in hospital than those in the same age group who do not have dementia’ (p. 7).
The stigma of young onset dementia
Because dementia is so strongly associated with older people, younger people can feel extra stigma and discrimination. A younger person may not be believed when they say they have been diagnosed with dementia. This attitude can add to a person’s problems. For example, one woman with dementia reported being ‘laughed at’ when she told others she had dementia (this comment appeared in an Alzheimer’s Society newsletter). Another woman with dementia who talks to medical students about her condition as part of their training says, ‘The first barrier you meet is that people don’t believe that you can have dementia if you can still function.’ To others, these women seemed too young and too well to have dementia, and so they did not get the courtesy and respect they deserved. Later, a younger person may feel and look out of place in a care home where most other people are in their 80s and 90s.
Terry Pratchett talks about the stigma of a dementia diagnosis in a video from the Alzheimer’s Society.
Access and download additional resources
Further reading Open
Alzheimer's Society (2008) Dementia: Out of the shadows, London: Alzheimer's Society.
Alzheimer's Society (2012) 'Younger people with dementia'. Alzheimer's Society factsheet 440. London: Alzheimer's Society.
Baldwin, R. and Murray, M. (eds) (2003) Younger people with dementia: A multidisciplinary approach, London: Martin Dunitz.
Blossom, S. and Brayne, C. (2008) 'Prevalence and projections of dementia', in M. Downs and B. Bowers (eds) Excellence in dementia care: Research into practice, Maidenhead: McGraw Hill/Open University Press.
Care Quality Commission (2013) Care update. Issue 2, Newcastle upon Tyne: CQC.
Kerr, D. (2007) Understanding learning disability and dementia: Developing effective interventions, London: Jessica Kingsley Publishers.
Moniz-Cook, E. and Manthorpe, J. (2009) (eds) Early psychosocial/interventions in dementia, London: Jessica Kingsley Publishers.
O’Hara, M. (2008) 'Bridging the gap'. The Guardian. 6 February 2008.
Parsons, M. (2001) 'Younger people with dementia: coming out of the shadows', in T. Adams and J. Manthorpe (eds) Dementia care, London: Arnold Publishers.
Walton, J. (1999) 'Young-onset dementia', in T. Adams, and C. Clarke (eds) (1999) Dementia care: Developing partnerships in practice, London: Balliere Tindall.
YoungDementia UK: This Oxford-based service offers care and support for younger people with dementia and their families. It was begun in the late 1990s by a woman called Helen Beaumont, whose husband Clive had young onset dementia.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including What is young-onset dementia (440), Explaining dementia to children and young people (515) and Rarer causes of dementia (442). It has also published a position statement on What is young-onset dementia?, maintains a database of services for younger people with dementia, and has a forum within its online community, Talking Point (for people with dementia and their carers), specifically for younger people with dementia.
Rare Dementia Support
Rare Dementia Support is a specialist support service for people living with or affected by one of five rare dementia diagnoses: familial Alzheimer’s disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy (PCA) and primary progressive aphasia (PPA). The service offers support group meetings, telephone contact networks, websites and access to information and advice and is based at the Dementia Research Centre at UCL’s Institute of Neurology. It was previously known as the Fronto-temporal Dementia Support Group.
The aim of this website from scientists at University College London is to make frontotemporal dementia (FTD) easy to understand for anyone with an interest in FTD. The site includes a dozen factsheets related to various aspects of FTD, available to download for free.
This Oxford-based service offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. The YoungDementia UK website has information on young onset dementia.
Younger people with dementia: living well with your diagnosis
This substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information.
Related pages from this section Open