Services for people with young-onset dementia
Services for all people with dementia should try to help them maintain their day-to-day skills and develop new interests if they wish to. This page provides information on age appropriate services for younger people and help with locating them.
Where possible, services should support people to continue to live an active life as a member of their local community. Local authorities can allocate a personal budget (only applicable in England) that can help in managing costs for such services. This is dependent, however, on whether the person qualifies for funding.
What is a personal budget?
Find out more about how a personal budget can be used, and how it is managed.
Finding age-appropriate services and support
A good starting point to finding out about appropriate support is where the dementia was diagnosed. There may be a dementia adviser or nurse – such as an Admiral Nurse – present who has specialised in young-onset dementia. Such a person can offer individualised advice and support as well as information about age-appropriate services that are available.
It is also a good idea to ask the GP or social services about a needs assessment, also called a community care assessment. This aims to find ways to help maintain independence and quality of life. If the local authority is paying for some of the person’s care and support, they should offer them a personal budget. This could be in the form of a direct payment, which can be used flexibly to help meet the person’s needs. For example, this could go towards sports or leisure activities or – as the dementia progresses – to pay a care worker to give personal care at home.
Find services local to you
Local Alzheimer’s Society staff can also advise on what is available in the area. They should be able to offer information and advice, and will run (or know about) dementia cafés and support groups, which are often led by such voluntary sector organisations. In addition, they can advise on befriending, advocacy, or information and support sessions for people with dementia or carers. They may additionally be able to offer a dementia adviser who can provide tailored information and advice.
In some parts of the country there are regional support groups for younger people or those living with specific dementias (such as frontotemporal dementia, familial Alzheimer’s disease). These can put younger people with dementia, their families or carers in contact with others in similar circumstances. They offer the opportunity for people to share experiences and strategies for living well.
Services for younger people
Younger people with dementia require dedicated age-appropriate services that are able to meet their specific needs. This could be in the form of a dementia café, activity group, adventure holiday, help at home, day care or residential care. If the person has a very rare dementia then their needs may be very specific.
In practice, such age-appropriate services may not often be available, or not available within a reasonable distance. This is particularly true of supported housing or residential care for people with young-onset dementia. However, some larger care homes now have age-appropriate provision within a dedicated part of the building.
This general lack of age-appropriate services is partly caused by low levels of awareness of the distinct needs of younger people with dementia. Another factor is that young-onset dementia is relatively uncommon, so services tend to be thinly spread.
The result is that younger people with dementia may find that they are referred to a service designed around the needs of older people. Such a service set up for people of a different generation is unlikely to meet the needs of a younger person. For example, activities planned for older people may be less physically demanding and therefore unsuitable for a more active younger person. Or they may draw on experiences or music from a period which has no meaning to a younger person.
Alternatively, a younger person with dementia may find that they are excluded from an older peoples’ service because of their age. This can mean that younger people find themselves in the ‘gaps’ between services, none of which will accept responsibility for their care. People with young-onset dementia and their families understandably say that they find this very frustrating.
Finding support online
Finally, people with dementia increasingly keep in touch through the internet. Alzheimer’s Society hosts an online discussion group called Talking Point, which has a dedicated group for younger people.