Young-onset dementia

4. Treatment

Dementia cannot be cured but there are treatments and support that can help someone live well with the condition. This involves drug and non-drug treatment, support, activities, information and advice.

Common drug treatments help with symptoms of dementia, such as donepezil for Alzheimer's disease or certain antidepressants for frontotemporal dementia. For vascular dementia, drugs will be offered to help to treat the underlying conditions.

Non-drug treatments are also available, usually through the GP. Counselling may help the person adjust to the diagnosis or with relationship issues. Talking therapies may help if the person (or anyone supporting them) becomes depressed or anxious.

Ask a professional about sessions of cognitive stimulation or life story work because these can also help. Non-drug approaches should also be tried first for behavioural changes.

Dementia progresses more quickly if someone is physically unwell, so it is important that the person looks after themselves. This includes regular physical exercise, not smoking, drinking alcohol only in moderation, eating a healthy diet and keeping to a healthy weight.

Age-appropriate services

Services for all people with dementia should try to help them maintain their day-to-day skills, friendships and hobbies, as well as to develop new interests if they wish to. Where possible, they should also 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.

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 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.

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 (eg 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. See 'Other useful organisations' for more about these, including websites and newsletters about specific dementias.

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