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Caring for young adults with dementia
Caring for young adults with dementia
Specialist services can help meet the needs of people with young-onset dementia and provide new roles for nurses, NT finds out more.
A DIAGNOSIS of dementia is devastating at any age but what about in your 40s or 50s - or even in your 30s?
'One gentleman had just been promoted and noticed he couldn't master a new system at work,' says community mental health nurse Angela Webster of one of her clients. 'He recently had a CT scan which has confirmed frontal lobe changes. He is 47 years old with a wife and teenage son.'
Around 18,500 people in the UK have dementia diagnosed before the age of 65, known as 'young-onset dementia' - whether that is Alzheimer's disease, vascular or multi-infarct dementia, or dementia resulting from conditions such as multiple sclerosis, HIV, alcohol misuse or brain injury. Despite having a mortgage, a career or even young children, most receive treatment within general dementia services.
'A lot of people expect it to be only people in their 60s or older. Younger people don't want to be in day care or nursing homes with lots of older people - there is no stimulation,' says Ms Webster. The team in which she works - Doncaster and South Humber NHS Trust's Young Onset Dementia Service - is one of a few in the UK specifically caring for people with young-onset dementia. It consists of two community mental health nurses, two outreach workers, a caseload of 80 clients and a consultant in the trust who reviews clients.
The service only exists thanks to the local young-onset dementia support group, People Relying On People (PROP). For five years the group campaigned for funding, granted in 2004, and now it works in partnership with the team.
Ms Webster had been looking for a job in the community when she noticed an advert for her current post. Having worked on an acute elderly psychiatric ward since qualifying, her experience was of functional rather than organic mental health illness. She decided to arrange a visit to find out more. 'That opened my eyes,' she recalls. 'PROP is stand-alone but it relies on the support of the team - that appealed to me.
'The caseloads are relatively small and you have good relations with the client and support people throughout their whole journey.'
The team receives referrals from GPs, community mental health teams, wards and neurologists - and not only for short-term memory loss. 'There can be personality changes. Some have lost their temper at work. There can also be loss of coordination and emotional issues.'
After referral, Ms Webster takes a client history and makes a baseline assessment using two screening tools, one of which is the Mini Mental State Examination weighted for subjects' ages. 'There is no ultimate screening tool so we observe people for six months then go back and re-screen if we are in any doubt.
'Alcohol misuse can make a diagnosis very difficult, as can other diagnoses like learning disabilities. Here we would liaise with other teams but not pick up.
'In the past it might have been a year or 18 months from first going to a GP before getting treatment. But the team allows clearer care pathways.'
Part of these pathways involve starting medication, such as an acetylcholinesterase inhibitor - a cognitive enhancer. However, NICE guidelines could affect the drug's use in the future. This is something that concerns Ms Webster and her colleagues.
'There was draft guidance in January that does not advise meds for 'early stage', only later - although clients already taking the drug will be able to stay on it,' explains Ms Webster.
'We are closely involved and we can see the benefit, not always on the scoring but in everyday function,' she insists. 'We have a gentleman who has been able to start reading again because his concentration improved. It is those general day-to-day improvements that patients value.'
However, as dementia is a progressive condition, medication can only address symptoms for a finite period of time and patients have to adjust to the impact that the disease will begin to have on their lives. 'People often end up leaving work on a bad note. This can create financial issues - many still have mortgages and kids.
'We work with employers, educating them and setting up a buddying system, maybe providing extra support. Work can be a very positive stimulation, so if we can keep it going, even at a different level, it can be positive.'
The team also arranges for help with financial assessment and form-filling where required.
As a client's condition progresses, support focuses on issues such as long-term nursing care and supporting carers. 'A gentleman recently went into long-term care - he is 58 years old. Even though his wife knows she can't be his 24-hour carer anymore, it?s a grieving process for her. They have been married for 40 years. Seeing how easily he has settled into the home is hurtful. But he's not the person she married,' says Ms Webster.
The team has learnt from other similar services around the country and is now supporting other trusts who wish to set one up. PROP, together with local social services, has produced a DVD Out of Sight, Out of Mind featuring clients and their carers to help convey their experiences and highlight the need for specialised services. Ms Webster and her colleagues wrote an accompanying leaflet so they could use the DVD as a teaching aid.
The proceeds will also help sustain PROP's group activities, which provide important stimulation for clients. 'It helps them sustain their independence as much as possible,' says Ms Webster. The team is also helping PROP to lobby for specialised respite facilities.
Meanwhile, Ms Webster will continue to act as an advocate for her clients. 'They can say things but we can support them to have a voice, especially after their condition has progressed.'
Could you be a young-onset dementia nurse?
This could be for you if: you like working in partnership with service users and supporting them over the long term.
You need to be good at: liaising with carers, advocating, multi-agency working.
You need to have: an RMN qualification.
You don't need to have: previous experience of working with people with dementia, although this is a definite advantage.
Other similar jobs you could consider... working in general dementia services, community psychiatric nurse, working for a dementia charity.
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