Work Programme 1: Member involvement

Vision of Work Programme 1:

To feel enabled and empowered to develop and facilitate our own research agenda.

 Values of Work Programme 1:

  • 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 groups 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’.
  • To lead a neighbourhoods-focussed research project, based on the priorities of the group (facilitated by Dr Caroline Swarbrick).

There are currently three ‘Member Involvement’ groups of people living with dementia in the Neighbourhoods and Dementia Research Study:

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.

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.

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.

 Salford INSPIRE

Salford INSPIRE will be set up in collaboration with Age UK Salford during the Summer of 2015. Employing a person living with dementia as the group facilitator, 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 Work Programmes.

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

Emma Ferguson-Coleman and Prof Alys Young (Work Programme 7) are currently setting up a Member Involvement group of Deaf people who use sign language and carers living with dementia.

Groups meet on a two-monthly basis and are currently exploring ideas for projects, including life story, training and GP access. Recently, the Open Doors Neighbourhoods Research Group visited Salford Museum and were treated to a tour of ‘Larkhill Place’ and enjoyed a ‘taster’ of the reminiscence boxes. Many thanks to Naomi Lewis (Outreach Officer) for arranging and supporting us during our visit.