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Consulting and involving service users

picture of kate  What was the project about?
 This was the main project I undertook when I worked at the Dementia Services Development Centre (starting in 1998) . It was funded by the Joseph Rowntree Foundation.

The aim of work was to explore how direct care staff can encourage people with dementia to express their views about the services they use.

It followed on from Malcolm Goldsmith's DSDC-based work which put the subject of communication on the agenda by culminating in his book Hearing the Voice of People with Dementia (published by Jessica Kingsley in 1996) .




directions graphic  Where did the project take place ?
 It was vital that this work was carried out in real, busy service settings so that we could confront the challenge of learning in the course of day-to-day practice.
I set up collaborations with a range of services, including nursing homes, day services, long-term care settings in Scotland and England . I worked directly with staff to develop ideas about how to help individuals to communicate about their experiences and views.

The work took a developmental form with practitioners trying out an approach, talking with me (and also colleagues) about how it went, and then trying again.
In this way the project was comprised of a large number of independent practice-based 'mini-projects' which took place within the various settings and built on established relationships between staff and service users .

There was wide variation in terms of how disabled the service users were by their dementia. Some used almost no language and acted in ways which challenged others. Most of the staff who took part were untrained.

picture of woman with dementia  What kind of communication approaches were tried?
 The approaches included:

using pictures to stimulate
      conversation (for example,
      of people, objects, scenes
      around the service setting)

exploring the value of ‘third
      person’ approaches, for
      example saying something
      like “If this person [in a
      photograph] were going to
      come and live here, what do
      you think they would want
      to know about?”

encouraging communication as part
      of various types of activities
      (for example, having a bath,
      going for a walk)

learning about how people communicate
      their needs and views in
      nonverbal ways.

  These ideas came about through considering the strengths, needs and interests of the people with dementia who were taking part in the project.

quotation from staff participant  What happened for staff?
 This work provided important insights into the experiences and needs of care staff.

For example, we found that although trying out the practical approaches with service users was important, this was not enough. A lot of the learning came about through talking afterwards about what had happened.

This work is complex and demanding and care staff need time to think and talk about their experiences. In the project, a lot of this reflection took place with myself, but what was also vital was that they had the chance to talk to each other about what they had tried to do.

Through such reflection they made important connections and came up with new ideas . As the above quotation from one of the staff participants indicates, they experienced a sense of excitement about what they were doing, and developed a greater sense of personal meaning and satisfaction in their work.

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