Source: Alan Fletcher
For a year and a half, Justine Schneider, professor of mental health and social care at the University of Nottingham, oversaw three researchers who carried out participant observation while working half-time in dementia wards. The results were published as Challenging Care: the role and experience of health care assistants in dementia wards in 2010.
Along with in-depth interviews, says Professor Schneider, the “team ethnography” produced 600,000 words of field notes on “what the researchers observed, what they felt and what they reflected on what they observed”. These revealed, for example, the ways that care assistants “felt marginalised by the clinical staff” and their often “tricky relationships with visiting family members” who complained about concerns they did not have the power to address.
Once they had analysed the data, continued Professor Schneider, they realised that they “wanted to share the vivid field notes more widely” – and set out to find a suitable playwright. The first person to put herself forward was Tanya Myers, co-artistic director of the Meeting Ground Theatre Company.
The Challenging Care report included a rich range of material about carers, but for ethical reasons said little about the people with dementia themselves, so Ms Myers set out to “source patients’ stories independently”. She also became increasingly interested in “the whole issue of person-centred care”, given that “there are as many forms of dementia as people with dementia”.
Although the initial plan was to produce a play for the general public, recalls Professor Schneider, workshop performances of Inside Out of Mind in 2011 made clear its “potential as a learning experience for people working in dementia wards. They don’t get a lot of on-the-job training and a medium like theatre seemed likely to prove more accessible than a conventional classroom.”
The first proper run of Inside Out of Mind, at Nottingham’s Lakeside Arts Centre in 2013, was therefore partly funded by local health trusts who bought up tickets for their care assistants.
“A lot of the audience had never been to the theatre before,” notes Ms Myers. “The demonised underpaid workers were delighted to see their experiences reflected in a play that doesn’t demonise or blame even though it explores issues of care. Senior staff recognised that it is valuable to put on stage care which is less than ideal as a basis for discussion.”
Given that around 225,000 people in the UK develop dementia every year, stresses Ms Myers, “the issue is not going to go away – we need to see what is positive about dementia and not just push them into the shadows”.
But isn’t dementia a rather depressing topic for most people’s idea of an entertaining night out?
Not at all, replied Ms Myers, her play is actually very funny, not least because one of the carers said to her: “If you don’t give us permission to laugh, I’ll wring your neck. Laughter is one of our essential survival strategies.”