Living with dementia magazine March 2010

Setting up a specialist service for younger people with dementia with no money may not be top of most people's lists. For Dr James Warner, Director of Medical Education at St Charles Hospital in west London, however, it was a priority.

'Younger people with dementia often have more complex needs than older people, not just because their circumstances are different.'

Dr James Warner, who is also Consultant in Older Adults Psychiatry at St Charles Hospital, says,

'People with early onset dementia often have very complex and multiple needs. They can be the main breadwinners. They are more likely to have young children. And dementia in younger people is difficult to diagnose as the causes are more rare.

On top of this, services are very patchy. There are lots of areas with no young onset dementia services. Where there aren't any services, no one wants to take responsibility for those people in their areas, which means turf wars.'

'Three years ago, there was no service for people with early onset dementia in the London boroughs of Kensington and Chelsea or Westminster.'

Dr Warner says,

'We weren't allowed to take referrals for people under the age of 65, as it wasn't appropriate for them to be in an older person's service. People were passed from pillar to post, and there were complaints because people weren't being provided for.

It was clear that we needed a young onset dementia service. There was great enthusiasm within the trust* for the idea. We had a series of meetings with all stakeholders: GPs, commissioners, neurologists, general older psychiatrists and managers. We distilled the idea and came up with a business case. The commissioners were delighted. It took the stress off them because we were providing a service.

'This happened with no new money at all. We had a look at the services we already had, and reconfigured them.'

Up and running

The young onset dementia service was set up in July 2007. It is a specialist, co-ordinated service for the referral, assessment and support of younger people with dementia and their carers. The multidisciplinary team, pictured here, includes doctors, social workers (funded by Kensington and Chelsea and Westminster boroughs), an occupational therapist, a dementia specialist nurse, psychologists, and a range of other therapists.

The team meets every Friday. This enables team members to bring each other up to date about the people they are supporting. Currently, there are 34 younger people with dementia using the service. Talks are underway to expand into adjacent boroughs to reach out to other potential users. As the incidence of dementia among younger people is rare, the service needs to cover a large area to remain viable.

Support

Support is offered both in people's homes and at a specialist therapeutic day group at St Charles Hospital, which takes place once a week. Team members identify areas where people need additional help, support carers to keep people with dementia at home and find respite care and day care, and advise on the management of lifestyle and the psychological symptoms of dementia. There is a focus on maximising people's strengths.

Dr Warner says,

'We offer continuity of care from initial diagnosis. This is no fast-track factory floor type approach. We are working together in a person-centred way.'

Treatment

He says,

'Drug treatment is a tiny component of dementia care. We offer advice on managing behavioural symptoms, cognitive rehabilitation, and family and arts therapies.

'Art therapy isn't just about painting and drawing; it's about interpretation and entering into a dialogue with individuals. It's amazing how people respond to that. It's the same with music therapy. We can help people to use music as a vehicle to communicate when dialogue isn't so easy. Even people with severe dementia respond to music therapy.'

'On average, there are 150 younger people with dementia in Kensington, Chelsea and Westminster. We'd have been happy to diagnose 50 per cent of these people. We've actually achieved 66 per cent.' In the UK, it is estimated that only one third of people at any stage of their illness actually receive a diagnosis of dementia.

Dr Warner says,

'Leaflets have gone out all over the place, but there still isn't universal knowledge that we exist. We're trying to find as many younger people with dementia as we can so we can support and treat anyone who needs us.'

*Central and North West London NHS Foundation Trust.