Work programme 1

Member involvement: co-researching together

Work programme 1 was a partnership between academics, people living with dementia and care partners in which we defined our roles as ‘co-researchers’.

Working alongside Open Doors (Salford, Greater Manchester) and Salford INSPIRE (set up and funded through the Neighbourhoods and Dementia study), our aim was to develop a collaborative research agenda, designing and undertaking a research project or campaign around the priorities set out through shared decision-making. These were our vision and values:

Vision

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

Values

• Inspire others to participate in the wider research community.
• Contribute to the development of a neighbourhood model of dementia.
• Challenge stigma.
• Encourage and promote inclusion and diversity.
• Share our knowledge and understanding of how neighbourhoods (can) support us.
• Support and feel supported through peer support and academic networks.

Achievements

Open Doors

• Alongside Chronicle Films, we designed and produced The Changing Face of Our Neighbourhoods, which is a suite of three cultural heritage films. We then worked alongside Manchester Camerata, Tracks and Layers, and Chronicle Films to produce an animation based on the films, but made accessible for primary school-aged children.
• Conference presentations, including UK Dementia Congress, British Society of Gerontology and the First International Conference on the Arts and Dementia.
• Feature in the ITN/ADI Every Three Seconds film.
• Publications, including journal articles and book chapters.
• Guest editors of the 2019 special edition of Dementia: the international journal of social research and practice.

Salford INSPIRE

• ‘Mr Alzheimer’s’ primary school campaign in three primary schools.
• Presentation at Alzheimer Europe 2018.
• Numerous dementia awareness raising events, including ‘Together We Can’, ‘The Good Life Festival’ and dementia pop-up cafes.
• Working with 37 GP practices to develop Dementia Action plans.

What next?

Open Doors

• Based on the CO-research INvolvement and Engagement in Dementia (COINED) model we developed in 2015, we are currently developing a proposal for another project, which we will apply for funding during 2019-2020.
• Given the unpredictable nature of funding, we are working alongside Dr Ruth Elvish (WP8 lead) to develop a closing strategy for ending the group in its current format. Should we be successful with further funding, we will re-establish the research group at a later date.
• We are continuing to jointly author journal papers and submit conference abstracts, as appropriate.