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Life story work has improved the quality of life and care for people with Down's syndrome in residential homes and taught staff to look at clients afresh. Graham Hopkins reports.

We are living healthier and longer lives than ever before. And so are people with Down's syndrome. A Down's syndrome baby born in the 1950s might not expect to live beyond 15. Thanks to medical improvements, particularly antibiotics and heart surgery, people with Down's syndrome are now living into their fifties and sixties.

However, ageing brings its own challenges. Depending on which study you read between 55 and 75 per cent of people with Down's syndrome will have dementia in their sixties. This is three to four times more likely than people with other forms of learning difficulty.

These facts caused David Roulston, a director with Care, a national charity providing residential care for people with learning difficulties, to consider how to improve care for ageing service users.

Having read a book on the subject,¹ Roulston signed up the author to do some training. She proposed life story work. "The idea that she managed to sell to us was that through reminiscence work we would be able to make contact with the person again," he says.

Turnover in care homes is such that all too regularly new staff would arrive and be unable to build up a picture of who the service users were, their family, or their lives, says Roulston.

Two staff members from each home attended the course and then began the work in their homes and relayed their new skills to other staff. "They found out a lot of information that previously they had been unaware of. For example, one resident had spent most of his childhood in Italy," says Roulston. Another resident, they discovered, had learned to play the piano.

Only through this way of building up a picture do you find this kind of detail. They may not play the piano very well, but it gives you another facet to their character."

This work has encouraged staff to connect in a different way. If a resident becomes confused, items from their life story collection can be used as a prompt.

And it is not just photographs, says Roulston. "It might be a football programme from a cup final which they attended with their father. This might help them remember the game and then talk about their father and childhood. As we all do when we reminiscence we jump from subject to subject." It also involves being pro-active. Staff will take service users to their old schools, for example, and take their photograph outside.

One Down's syndrome service user with Alzheimer's had to be placed into hospital care, as the home could no longer cope. However, as well as medical information, the staff could hand over the life history work giving the hospital staff an immediate and rounded picture of the person.

There's nothing ground-breaking about life story work, but Care wanted to get away from the basic story books approach - date of birth, school details and so on. "Because we encouraged staff to gather up as many personal belongings as possible - it was this that allowed contact with families to take place," explains Roulston.

The positive work with relatives was an important bonus. Roulston admits there "was a feeling that relationships with families are never quite what they could be". But this work helped to break down those barriers. Staff were able to sit down with families, who were the main sources of information, and go through their relatives' lives.

Care has also organised training for service users, looking at life story work as part of improving the quality of leisure time in general. Roulston points out that some users were clearly getting envious of the quality time being spent with individuals on life story work - and are now asking to be involved. Well, as they say, that's life.

Background

Scheme: life story work.

Location: national.

Staffing: initially two staff in each "care community" run by Care. A care community can comprise up to six homes.

Clients: people with learning difficulties, particularly people with Down's syndrome, who have or may soon have dementia.

Inspiration: a need to address the problems faced by people with learning difficulties in the ageing process, and a wish to improve relationships with families.

Cost: Two training courses (£4,000) and minimal extra costs.

References

¹ Diana Kirk, Down's Syndrome and Dementia, Ventura Press, 1997

Resources

For more information contact David Roulston on 01670 511157, or e-mail: carenorth@freeuk.com

Care is willing to share PowerPoint presentations, handouts and summary of training courses relating to life story work.