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A stronger collective voice for people with dementia

Toby Williamson

24 October 2012

Can groups provide a stronger collective voice for people with dementia?

A growing number of people with dementia in the UK are becoming actively involved in groups to try to influence services and policies affecting people with dementia. The Dementia Engagement & Empowerment Project (DEEP) was a one-year investigation aiming to highlight groups and projects involving people with dementia. The report offers specific ways forward for organisations wishing to engage with people with dementia. This report found that:

  • There are only a small number of groups led by, or actively involving, people with dementia that are influencing services and policies.
  • 'Influencing' work includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising, and speaking at events.
  • Most groups undertook influencing work alongside peer support and social activities, and were local and relatively informal.

An accessible summary of the programme is also available in PDF, and below.

Summary

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What was DEEP about?

The project looked at work that groups of people with dementia have been involved in. We were looking at UK projects and groups where people with dementiawere influencing services and policies.

The project:

  • Collected information about the different ways that groups of people with dementia work. Many groups filled in a questionnaire about their work. A small number of groups were interviewed in more detail
  • Ran two national events for people with dementia early in 2012 – one in London and one in Stockport.
  • Involved people with dementia in a reference group for the project.
  • Made a film about the project.

What kind of work were groups involved in?

There are many examples of work around the UK, led by people with dementia. Work includes:

  • Lobbying government ministers.
  • Talking to the media about dementia.
  • Being on an advisory group for dementia projects.
  • Speaking at conferences.
  • Giving talks to those who work with people with dementia.

What did DEEP find out?

Many group members were only just coming to terms with their diagnosis of dementia. They are not yet sure that they want to get involved ininfluencing work. It is important that there is support to help people come to terms with a diagnosis. This can help people become more confident and get involved. Practical support was helpful, but groups did not want to be ‘taken over’ by large organisations. There is not yet an organised, national way in which groups of people with dementia can influence services and policies. Not everyone thought this was a good idea. DEEP found that it is difficult for groups to find ways to involve ‘seldom heard’ people with dementia (e.g. people with more advanced dementia, people with dementia from Black, Asian and minority ethnic communities).

DEEP – next steps

  • People with dementia think it important that there is more work to develop national opportunities for groups to network.
  • It is planned that DEEP will continue for another three years.
  • The Joseph Rowntree Foundation will provide funding to help to support and develop the work of groups of people with dementia.
  • DEEP also sets some challenges for dementia organisations to involve people with dementia in their work.

About the project

DEEP was managed by the Mental Health Foundation, Innovations in Dementia and Alzheimer’s Society. DEEP was funded by the Joseph Rowntree Foundation.

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