Young onset dementia: Services and support
Do younger people need specialist services?
Research suggests that younger people with dementia and their families value specialist services. They prefer seeing staff who are skilled and sensitive to the issues facing them.
There are different types of specialist services for younger people including assessment and diagnostic services, day care centres, support groups, respite, advocacy and counselling services.
Some NHS trusts (for example Birmingham and Solihull) have a dedicated consultant psychiatrist to assess and treat younger people with dementia. Other areas (for example Hammersmith and Fulham) have published a referral pathway that makes clear where responsibilities lie for the shared care of a younger person with dementia across a range of services.
Clive’s difficulties got worse, and he started to get lost. I could no longer look after him and the children; Clive had to be looked after elsewhere. The only place prepared to look after him was 50 miles from his young family.Helen Beaumont, from the YoungDementia UK website
Services here and there but not everywhere
Unfortunately, whether a younger person receives specialist help is likely to depend on where they live and the type of service they need. Some parts of the country have no services or projects aimed at younger people with dementia; others do have some.
In 2000, the Royal College of Psychiatrists and the Alzheimer’s Society undertook an analysis of services for younger people in England and found the highest number of individual projects was in the north west (Lancashire, Merseyside, Greater Manchester and Cheshire). The south west had the lowest. They conducted this analysis again in 2006 and found an increase in services, most notably counselling and advocacy-based services and projects. Still, the total number of specialist services was very low.
Supporting family members
When someone is diagnosed with dementia it affects the whole family, not just the individual. A younger person may have a spouse who still works, children who live at home, grandchildren, siblings, nieces and nephews who care but don’t understand what is wrong. Each member of the person’s family will have different questions and a particular role to play, and their own view about how best to help. The kind of information and support that is required will depend on the age of the family member and their relationship to the person diagnosed. For example, the person’s spouse will probably want to know what to expect and how best to cope. They may want to meet with other people in a similar position for support. Younger family members (say children or grandchildren) might appreciate a book called It’s me Grandma! It’s me, by Eileen Mitchell, which explains what dementia is in terms that a 7- to 11-year-old can understand.
Specialist care homes
If a younger person with dementia needs full-time nursing or residential care they are unlikely to find a facility that specialises in working with younger people with dementia. According to the Royal College of Psychiatrists and the Alzheimer’s Society (2006), in 2004 there were only 20 residential and nursing homes in the UK designed for younger people with dementia.
Clive Beaumont was 45 when he was diagnosed with dementia. His wife Helen went on to set up the Clive Project in Oxfordshire (now known as YoungDementia UK), a specialist care and support service for younger people with dementia and their families, because of the lack of specialist provision she encountered while trying to care for Clive. YoungDementia UK is working hard to establish ‘YoungDementia UK Homes’ – places that offer short breaks and long-term accommodation – so that younger people with dementia and their families have a high-quality, specialist alternative to home when or if another option is needed.
Links with other specialist services
Because of the particular issues and risk factors facing younger people with dementia (see the feature Key issues in this section) this group are likely to require input from non-dementia specialist services. For example, someone with Korsakoff’s syndrome might be referred to a substance misuse service, as they have more expertise in working with people who have a history of alcohol misuse. Because of the hereditary risk factors associated with some types of young onset dementia (also called ‘early onset dementia’ or ‘working life dementia’), a younger person (and family members) might be referred to a genetic counselling service.
A multidisciplinary and multi-agency approach is vital for younger people with dementia. For example, a younger person with dementia may also benefit from seeing a low vision worker. This is because dementia affects a person’s vision and it can increase the risk of a person developing an eye condition like glaucoma. Gadgets are available that may be able to help.
Self-directed support: making social care funding work for younger people
‘Direct payments’ and ‘personal budgets’ are two ways for individuals who are eligible for social care services to exercise control over the services they receive. This ‘self-directed support’ offers younger people with dementia the potential to choose more tailored services to meet their needs, and avoid using services that are inappropriate or aimed at much older people.
The most common form of self-directed support – a direct payment – is a cash payment given by a local authority social services department to an individual who needs assistance. A person must have been assessed as needing assistance to receive a direct payment and the payment must be used to purchase the assistance that the person is assessed as needing. The value of direct payments is nicely illustrated by what one woman said on the Alzheimer’s Society online web forum, Talking Point:
We receive direct payments for my husband, he does not want to go to a day centre yet and prefers to go out visiting places of interest. It gives me a welcome break too; we were given 12 hours a week.
From November 2009 the law changed to allow people who lack mental capacity to receive direct payments. In this situation an ‘agent’ is appointed, usually the person’s spouse or another family member (see the Alzheimer’s Society factsheet on ‘Direct payments’).
Not much is known about direct payments specifically in relation to people with dementia. From 2009 until 2011, the Department of Health in England funded a two-year project called Dementia Choices with a view to exploring, supporting and promoting different forms of self-directed support, including direct payments. A range of resources were produced as a result of this project, including a practitioner’s guide, leaflets, films and postcards. To access these, visit the Mental Health Foundation website.
More recently, a research review by SCIE (2013) on Improving personal budgets for older people reported that there was an absence of collected data on direct payments and personal budgets for people with dementia.
The other form of self-directed support – a personal budget – refers to social funding allocated to an eligible service user, which may be received in a range of ways: as a direct payment (cash), held directly by the person (or where they lack capacity by a ‘suitable person’); as an ‘account’ held and managed by the council in line with the person’s wishes, to pay for community care services which are commissioned by the council; as an account placed with a third party (provider) and ‘called off’ by the user in direct negotiation with the provider; or a combination of these options (see SCIE 2010).
For more information on direct payments and personal budgets, see SCIE’s Personalisation: a rough guide (2010).
Problems with direct payments
Evidence suggests that people value direct payments because they like the control and freedom it gives them. On the downside, many individuals and families are put off by the bureaucracy involved. Having to fill in complicated forms can add stress to an already stressful situation. Because there are quite stringent rules about how the money is used, some people worry about spending it. This is what another person said on the Alzheimer’s Society Talking Point:
It makes me very nervous about using the money in case they ask for it back 'cause it’s not been used properly.
Furthermore, research by Manthorpe and Samsi (2012) suggests that direct payments may lead to financial abuse if safeguarding coordinators do not put appropriate risk management mechanisms in place. These barriers and concerns probably explain why the take-up of direct payments remains low. For example, in Scotland it is estimated that only 300 out of 71,000 people with dementia receive direct payments (Alzheimer Scotland 2010). It is important that individuals and families are given the information and assistance they need to take up a direct payment. It may be that a personal budget is a more suitable option, with the local authority managing the budget and commissioning services in line with the person’s choices.
Activities that work for younger people
As well as ensuring younger people have access to age-appropriate services, it is important to help individuals and families get involved in activities that are important to them. These might be activities they have always enjoyed doing, for example hill walking, choral singing, cycling, taking holidays, visiting art galleries, swimming, or helping others. Some people may like to try something new such as fundraising, learning to use social media, or art. The point is to find out what kinds of activities a person would like to get involved in and to support them to do that.
A good example of an initiative which is all about helping people with dementia get involved in an activity that is important to them is Dementia Adventure. Established in May 2010 and based in Essex the service is designed to enable people with dementia to have personalised adventure breaks.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Services and support for younger people
- What the research says: Early onset dementia
Further reading Open
Alzheimer's Society (2010) 'Direct payments', Factsheet 473. London: Alzheimer's Society.
Alzheimer Scotland (2010) Let's get personal: Personalisation and dementia, Edinburgh: Alzheimer Scotland.
Dementia Adventure: see www.dementiaadventure.co.uk
Manthorpe, J. and Samsi, K. (2012) 'Inherently risky?': Personal budgets for people with dementia and the risks of financial abuse from an interview based study with adult safeguarding co-ordinators', British Journal of Social Work. First published online 27 March 2012.
Mitchell, E. (2010) It's me Grandma! It's me, London: Alzheimer's Society.
Royal College of Psychiatrists (2018) Young-onset dementia in mental health services, London: Royal College of Psychiatrists.
Social Care Institute for Excellence (2013) Improving personal budgets for older people, London: SCIE.
Social Care Institute for Excellence (2010) Personalisation: a rough guide, London: SCIE.
YoungDementia UK: see www.youngdementiauk.org
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 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017.
Related pages from this section Open