Dementia engagement and empowerment - people with dementia influencing services and policies

1. Dementia engagement and empowerment - people with dementia influencing services and policies Toby Williamson Head of Development & Later LifeMental Health Foundation

2. Mental Health Foundation • UK charity doing social research, service development, policy work, public information • Mental health problems and conditions including dementia (also learning disabilities) • Involving people (“patients”, “service users”) e.g. with dementia, in what we do and how we do it – “expertise by experience”

3. “Involvement” • Purpose and degrees of involvement: from consultation to control • Levels of involvement: • People involved in their own care and support • People involved in planning and developing local services they are using • People involved in the broader strategic and policy environment

4. Involving people with dementia • A recent development compared to other disability/illness groups • Policy context • National dementia strategies (e.g. in England - Objective 6: promoting peer support) • ‘Nothing about us, without us’ • Living with Dementia Group (England), Scottish Dementia Working Group + local initiatives

5. Dementia – specific involvement issues? • Progressive, cognitive impact of dementia • Language of “user involvement” • Effects mainly an older population group • Involvement of carers

6. Dementia Engagement and Empowerment Project (DEEP) • 1 year project to investigate, promote, support and celebrate leadership and involvement of people with dementia • Collaboration of voluntary organisations, led by the Mental Health Foundation, with Innovations in Dementia + Alzheimer’s Society • Funded by the Joseph Rowntree Foundation

7. Dementia Engagement and Empowerment Project (DEEP) • Mapping groups, projects and activities in the UK led by or actively involving people with dementia (August 2011 – Feb 2012) • Two events for people with dementia in 2012 • Project report/short film available later in 2012

8. Dementia Engagement and Empowerment Project (DEEP) • Potentially supporting the development of a network of these groups and activities • Informed by the views of people with dementia

9. Findings from the mapping survey 82 groups responded How were the groups set up? • 47% set up since 2010 • 69% were part of larger organisations • 69% worked at a local level (town or city) • 63% involved less than 20 people with dementia

10. What did the groups do that involved people with dementia? • The most common things were: • Being involved in meetings or advisory groups (65%) • Helping other people in the groups with dementia (peer support) – 62% • Social activities – 57% • Doing talks about dementia – 57%

11. How were the groups run or led by people with dementia? • The most common ways were: • Deciding what the groups did (68%) • Leading certain activities (54%) • A small number of groups employed people with dementia or paid for their contributions

12. Challenges • Practical difficulties (funding, transportation, etc.) • Progressive nature of dementia • Representing ‘seldom heard’ groups • Low expectations • Developing a network?

13. Achievements • Enabling the voice of people to be heard • Raising awareness and acting as “ambassadors” • Training health and social care staff • Advising on local and national dementia plans/polices • Being employed in paid roles • Beneficial to the individuals involved

14. Dementia Engagement and Empowerment Project (DEEP) Toby Williamson twilliamson@mhf.org.uk 020 7803 1132 www.mentalhealth.org.uk/deep