This is your life

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

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.


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

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

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.


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


For more information contact David
Roulston on 01670 511157, or e-mail:

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

More from Community Care

Comments are closed.