Work Programme 1 Description

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:

1. Scottish Dementia Working Group

  • The Scottish Dementia Working Group ( 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.

2. Open Doors (Salford)

  • The ‘Open Doors’ network ( 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.

3. EDUCATE (Early Dementia Users Co-operative Aiming To Educate) (Stockport)

  •  EDUCATE ( are a group of people living with dementia (supported by ‘buddies’) who raise awareness of living with dementia through talks, presentations and training.

 4. Salford INSPIRE

Salford INSPIRE is currently being set up in collaboration with Age UK Salford. Employing a person living with dementia as the group facilitator and supported by a Support Worker (both posts 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.


Alongside our Swedish colleagues, we also plan to set up a Member Involvement group involving people living with dementia based in Sweden during 2016.