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

Toby Williamson

Head of Development & Later LifeMental 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 survey82 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

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 Williamsontwilliamson@mhf.org.uk

020 7803 1132www.mentalhealth.org.uk/deep