Younger people with dementia

Summary

Dementia is not solely an older people's condition. In the UK there are over 17,000 people under the age of 65 who have dementia. The assessment, diagnosis and provision of appropriate care and treatment for younger people with dementia, pose particular challenges. This is partly because their numbers are small and therefore dispersed geographically, but also because their life circumstances are likely to be different to those of older people - they may still be in work, have young families and have mortgages to pay.

It is important that younger people with dementia have access to a range of specialised services that address their particular needs and enable them to live well with dementia. This should include not only health and social care services, but also wider services that promote their wellbeing such as financial advice and support to remain in work, if they choose to do so. It is essential that commissioners of services and service providers recognise the needs of younger people with dementia, as well as older people, and respond appropriately to them.

Background

There are 800,000 people living with dementia in the UK. Dementia is most common in older people, but younger people can get it too. There are over 17,000 younger people with dementia in the UK. However, this number is likely to be an under estimate and the true figure may be up to three times higher. Data on the number of young onset cases are based on referrals to services. This significantly underestimates the numbers, because not all those with young onset dementia seek help early in the disease course.

Younger people with dementia may have different needs to people aged over 65 requiring a different type of service or a response appropriate to their age. In general, younger people with dementia are more likely to:

Be in work at the time of diagnosis
Have dependent children
Have heavy financial commitments such as paying a mortgage
Have a rarer form of dementia with which professionals are less familiar
Find it difficult to rationalise losing skills at such a young age
Find it more difficult to access appropriate information and support.

Much of the support for people with dementia comes from family and friends, who provide unpaid care. Younger people with dementia are more likely to have younger partners and family, who may be in work and/or education. This may mean that their friends and family are also less available to provide support for them.

The specific needs of younger people with dementia have been recognised in the dementia strategies and plans in England (2009), Northern Ireland (2011) and Wales (2011). There is also reference made to younger people with dementia in the National Institute for Health and Clinical Excellence (NICE) guideline, which states:

'younger people with dementiahave special requirements, and specialist multidisciplinary services should bedeveloped, allied to existing dementia services, to meet their needs forassessment, diagnosis and care.'

Alzheimer's Society welcome the recognition of the need to respond appropriately to the needs of younger people with dementia. However there remains much to do to overcome the chronic shortage of specialist services for younger people with dementia.

Diagnosis

There is often a significant time period between younger people with dementia first seeking help from their GP and receiving a diagnosis. Dementia is relatively rare in this age group and their symptoms may be put down to stress or depression. Alzheimer's Society's Dementia: Out of the shadows (2009) report also found that people with early onset dementia often reported more negative responses from specialists when trying to get a diagnosis.

Early diagnosis of dementia is essential to rule out other conditions that may be treatable. It also ensures that the person with dementia and their carer are able to access appropriate care and support, and make plans for the future. Alzheimer's Society supports the recommendation made in the National Dementia Strategy for England that training for undergraduate professional qualifications and continuing professional development for health and social care staff should contain modules on dementia care. This should includw an understanding of the diversity of dementia, including younger people with dementia.

Access to appropriate care and support

Once diagnosed, younger people with dementia often find it difficult to access suitable support and services. Dementia care services are usually designed for older people. Some dementia services have a minimum age criteria of 65 and even if these services accept younger users, the type of care they provide may not be appropriate. This means that younger people with dementia may have to travel considerable distances to access appropriate services or may be left without the support they need. The lack of appropriate support can leave younger people with dementia and their families at particular risk of becoming socially isolated, as young-onset dementia is less common and not well understood.

The 2000 Royal College of Psychiatrists' report (last reviewed in 2006) recommended that there should be a named individual at the level of commissioning authority with responsibility for planning services for younger people with dementia, and a clinician to act as a focus for referrals. Alzheimer's Society calls on all Clinical Commissioning Groups to put in place local leadership for services for younger people with dementia in England.

Personal budgets for younger people with dementia

Given the lack of appropriate services, there is potential for personal budgets to be particularly beneficial to younger people with dementia because they can develop a package of care that is tailored to their needs. Alzheimer's Society Getting Personal? (2011) report found some evidence that younger people with dementia and their carers are more likely to have been offered, and be using, direct payments or personal budgets than older people with dementia.

However, Alzheimer's Society's report also found that there are currently barriers that prevent people with dementia accessing the range of personal budgets options. These include local markets that are not yet fully developed to deliver a range of different types of dementia services. It is vital to improve the type and supply of services and forms of support available. Commissioners should recognise the considerable resources already being spent across health and social care on dementia and must be encouraged to spend resources more effectively to provide quality care of the appropriate type. For personal budgets to really deliver benefits for younger people with dementia there needs to be an infrastructure of services in place.

Experiences of younger people with dementia and their carers

The Society has produced a publication in which younger people with dementia and their carers share experiences. This gives a helpful insight into the challenges they face:

"Because people don't expect dementia at this age it does make it doubly hard. 'Oh, he's fine. I forget things - it's part of getting older', and you get to a point when you think 'if one more person says that to me...' of course you forget as you're getting older, but this is different."

Further references can be found in 'Lives interrupted: experiences of younger people with dementia' produced by Alzheimer's Society.

Services for younger people with dementia

Younger people with dementia should have access to specialist services focussed on meeting their needs. The Alzheimer's Society has a long-standing commitment to the development of quality services that meet the needs of younger people with dementia. These include regularly updating and disseminating a comprehensive database of services for younger people with dementia and a special forum on 'Talking Point' the Society's online web forum.

Alzheimer's Society runs services across England, Wales and Northern Ireland. Some of these are specifically for younger people with dementia. For example, in Bristol, the Limes Centre provides a social group setting for younger people with dementia to meet others and take part in a wide selection of activities, with support from staff. Activities can include anything from going out for coffee, Tai Chi and basketball to gardening and relaxation therapies. Every person with dementia has a support plan and a key worker. People who attend the Limes say they benefit from being able to speak to others in the same situation, get out of the house and just have fun.

Young Dementia UK

Young Dementia UK (previously known as The Clive Project) is another example of a specialist service for younger people with dementia. It was established in 1998 to develop and provide a range of integrated and flexible services for younger people with dementia and their carers in Oxfordshire.

Support services provided by Young Dementia UK include:

One-to-one support for the younger person with dementia
Support for the family and friends of younger people with dementia
Social events and a monthly café for anyone affected by early onset dementia

The Society campaigns for:

GPs to have the relevant skills, training and support to recognise the symptoms of dementia in all age groups
Access to specialist services including home, day, respite and continuing care, which recognise the different life circumstances and environment of younger people and their carers; specialist counselling should also be made available
Employers and the social security system to adopt good employment practices that support people with dementia and carers to remain in work if they choose, but which also recognise dementia as grounds for early retirement and which protect a person's entitlement to pension rights and other benefits
Implementation of the recommendations of the Royal College of Psychiatrists on the care of younger people with dementia - in particular, the recommendation that old age psychiatrists should be the lead clinicians in the care of younger people with dementia should be implemented.