Member Involvement (Work Programme 1)
‘Member Involvement’ is a collaborative partnership between groups of people living with dementia, academic researchers and service providers. We refer to those involved in the groups as ‘co-researchers’ to consolidate this partnership. The vision and values of this Work Programme were developed by people living with dementia.
To feel enabled and empowered to develop and facilitate our own research agenda.
- To inspire others to participate in the wider research community.
- To contribute to the development of a neighbourhood model of dementia.
- To challenge stigma.
- To encourage and promote inclusion and diversity.
- To share our knowledge and understanding of how neighbourhoods (can) support us.
- To support and feel supported through peer support and academic networks.
The purpose of the Member Involvement Work Programme is twofold:
- To contribute to all Work Programmes (as appropriate) as ‘co-researchers’, aligned to the Neighbourhoods and Dementia Research Study ‘Co-Research Involvement and Engagement Model’, co-developed by the groups described below and the Work Programme Lead.
- To co-design and lead a neighbourhoods-focused research projects, based on the priorities of each group (facilitated by Dr Caroline Swarbrick).
There are currently four Member Involvement groups of people living with dementia in the Neighbourhoods and Dementia Research Study, all of whom are developing their own research projects:
1. Scottish Dementia Working Group
- The Scottish Dementia Working Group (http://www.sdwg.org.uk/) is a national campaigning group which is run by people living with dementia, to improve services for people living with dementia and attitudes towards people living with dementia.
Project: Training for dementia care researchers to equip researchers with the practical know-how to undertake research alongside people living with dementia.
2. Open Doors (Salford)
- The ‘Open Doors’ network (http://dementiavoices.org.uk/group/open-doors-project/) is facilitated by Mike Howorth who has Alzheimer’s disease. Open Doors support people who have recently received a diagnosis of dementia. Open Doors also run a book club and several cafes.
Project: ‘The Changing Face of Our Neighbourhoods’ uses film and historical materials to explore and express changes in the culture, community and environment of Salford. The group is also putting together a Neighbourhoods Story Card and Neighbourhoods Memory Box. Additional co-investigators: Salford Community and Leisure; Beena Khetani (BBC Consultant).
Our blog can be found at: https://salfordneighbourhoods.wordpress.com/
3. EDUCATE (Early Dementia Users Co-operative Aiming To Educate) (Stockport)
- EDUCATE (http://www.educatestockport.org.uk/) are a group of people living with dementia (supported by ‘buddies’) who raise awareness of living with dementia through talks, presentations and training.
Project: ‘Whose audit is it anyway?’ explores the relationship between the experiences of people living with dementia and the physical environment.
4. Salford INSPIRE
Salford INSPIRE was set up in April 2016, in collaboration with Age UK Salford. Joy Watson received a diagnosis of dementia just over two years ago and is employed one day a week as the group facilitator. Emma Smith is employed as a Development Worker and both posts are run through Age UK Salford. The ambitions of INSPIRE are fourfold:
Ambition 1) To establish regular information-giving and awareness-raising sessions to (though not limited to) the local Council, businesses, organisations and educational facilities across the eight neighbourhoods in Salford.
Ambition 2) To run ‘information clinics’ for people living with dementia and carers, to be held at a community-based resource centre.
Ambition 3) To develop and pilot (alongside members of INSPIRE) an awareness-raising campaign across all eight neighbourhoods in Salford, supporting and promoting the city’s vision of becoming ‘dementia friendly’.
Ambition 4) To promote and facilitate into practice (as appropriate) the findings of the other Work Programmes in the Study.
Current activities of Salford Inspire can be found at: https://www.facebook.com/Salford-Inspire