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

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”

“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

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

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

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

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

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

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

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%

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

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

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

Dementia Engagement and Empowerment Project (DEEP) Toby Williamson