"I will tell you something of my own": a performance project researching the lives of people with dementia

"I will tell you something of my own" was an innovative performative social science project that aimed to celebrate and explore the lives of people with dementia, with a view to helping to combat dementia stigma.

Grants for the research were received from Gloucestershire NHS and Arts Council England. Partners and supporters were Age UK Gloucestershire, Alzheimer’s Society and Emmaus.

There were two aspects to the project: a piece of interview-based qualitative research and a multi-arts exhibition. Interviews were carried out with six participants who had moderate dementia. These were then analysed using interpretative phenomenological analysis, with a view to exploring participants’ lived experiences of dementia. These interviews also doubled as creative sessions in which participants worked with Helen Johnson to select and describe salient objects which they felt told a story about their life or represented something that was important to them. A selection of these objects was then placed in a deep frame and this became the participant’s collage.

The finished collages were displayed in an exhibition alongside poems co-written by people with dementia and Karen Hayes, and photographs, songs and poetry/song fusions inspired by conversations with people living with dementia. These artworks were initially displayed for six weeks in Stroud, England between December 2013 and January 2014, and shortly afterwards in a three day long exhibition for "Strike a Light Festival" in nearby Gloucester.

The aims of the project were

> To explore the everyday lives, thoughts, competences and challenges of people who live with dementia
> To educate the general public about dementia, dementia care and the continuing humanity of those who live with dementia
> To help combat the stigma around dementia

"I find this exhibition very moving. The voice does not die because the memory is gone – and the long-ago memories become the present again. Let’s hope we learn to treat dementia more as a friend than an enemy. Thank you for this" Feedback from a visitor to the exhibition.

The project demonstrates the ability of performative social science to bring social scientific research to larger and broader audiences, to touch audiences on both emotional and cognitive levels, and to make a meaningful difference to the lives of participants and others in their community.

Interview-based research:

Five themes were elicited from an interpretative phenomenological analysis of the interview data: awareness and understanding of dementia; clarity and confusion; social support and relationships; living with dementia; and life lived. Together, these themes narrate the lived experiences of people with dementia, demonstrating their awareness both of the difficulties presented by dementia and the negative perceptions of others around this condition. These findings were discussed in the 2016 publication 'Exploring the Lived Experience of People with Dementia Through Interpretative Phenomenological Analysis'.

Exhibition:

The first run of the exhibition attracted a total of 894 visits, and an estimated total reach of approximately 9,510 people (including exhibition visitors, audience at outreach talks, listeners to radio broadcasts, visitors to internet platforms and other project offshoots). This audience grew through conference presentations and through articles such as Gregory (2014a) in Forum: Qualitative Social Research and Gregory (2014b) in The Psychologist magazine. 

Many visitors reported that their views had been challenged by their experience of the exhibition and that they had a fuller understanding of personhood in dementia. Others arrived already valuing a person-centred approach to dementia. For this latter group, the display served a different function, reinforcing their convictions and, in some cases, providing them with a medium through which they could communicate these to others.

Gregory (2014a) expands on this analysis with reference to Jones’ (2007) six core criteria for evaluating performative social science work. Gregory’s article explores the extent to which the project met Jones’ criteria with reference to data from feedback questionnaires, footfall figures, guestbook comments, emails and participants’ reflections.

Publications

Johnson (née Gregory), H. (2014a). "I Will Tell You Something of My Own" – Promoting Personhood in Dementia Through Performative Social Science. Forum: Qualitative Social Research, 15 (3): Art 18. Available online here.

Johnson (née Gregory), H. (2014b). "I'm No Different." The Psychologist, 27 (8): Centre page spread.

Johnson (née Gregory), H. (2014c). ‘I Will Tell You Something of My Own’ – Using the Arts and Science to Explore Life with Dementia. Journal of Dementia Care, March/April.

Johnson, H 2016, 'Exploring the Lived Experience of People with Dementia Through Interpretative Phenomenological Analysis', The Qualitative Report, vol. 21, no. 4, pp. 695-711.