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:
An accessible summary of the programme is also available in PDF, and below.
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.
What kind of work were groups involved in?
There are many examples of work around the UK, led by people with dementia. Work includes:
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
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.