Remembering My Hat

13th September 2013

BSG 2013, Oxford, Part 3

Partial and particularly incomplete notes from a conference. Part one here and part two here

Symposium: Using the Arts to humanise healthcare education about people with dementia

Sherry Dupuis, University of Waterloo, Canada

The pedagogical possibilities of research-based drama in dementia care

Project came out of desire to resist dominant popular discourses of dementia ‘shell of himself’ ‘burden of care’ ‘long goodbye’ ‘36 hour day’ ‘loss of self’ as well as bio-medical versions.

Looking at effects on audience members  – how images and actions changed for families and workers of PWD over a one year period, after seeing film called ‘I’m still here’ – research based drama – script much from transcripts of interviews, result of collaborations with PWD, workers, actors and playwrite.

(cc) Nico Macdonald

Pre and immediately post-performance focus groups (n=106 people)

Interviews 6 weeks and 12 months after viewing (no.s reduced at each stage as you’d expect to 83 at end)

Participants had vivid memories at 6 weeks – feelings of compassion and better understanding of PWD’s perspective. Talked about scenes flickering into their brains months later. Expanded perspective, deepened understanding

Some people felt they are unchanged because already knew this – affirmed their existing awareness. But often in the interview they then went on to talk about ways they had changed [this is surely about face and presenting yourself as a competent member to start with – dynamics of interview].

Some evidence of changed behaviours as a result – family members joking more, recognising humour in situations + focusing more on person, not trying to get other jobs done at the same time. Care workers talked about checking for UTIs more, having a better admission form, running support groups for families.

Cathartic experience for some family members, transformative healing process, emotional release.

DVD and teaching-learning tool available from www.marep.uwaterloo.ca

New study will do observational work in care homes about whether it actually changes care worker’s practices. There is some evidence of practical changes already e.g. policy changes, support group set up etc.

Dialogue with others after the performance was really important for deepening learning.

 

Ruth Bartlett, Univ of Southampton

Agnes & Nancy – a short film about two women with dementia

A documentary film she commissioned. Comes out of her ESRC First Grants study of PWD who are activists and campaigners for dementia (like Terry Pratchett but he didn’t take part!) – ‘No Limits: reimagining life with dementia’. 16 people took part, 11 men, 5 women.

Agnes and Nancy are real people, real names – offered pseudonym but all but 2 didn’t want that – being named and known is part of their activism. Film is available on vimeo or email Ruth and she can also send teaching resources / resource pack for facilitators to use.

Documentary film definition: about real life, but not itself real life. Term first used in 1926.

Health Equity Institute in San Francisco is leader in the field, have 35 documentary films ‘For Health and Social Justice’ made by and for students, incl ‘Old Age is not for Cissies’ about LGBT ageing.

Paper by Aagje Swinnen in The Gerontologist (2013) on dementia in documentary films – way it is always a representation of reality, not always helpful.

Common responses to film:

  • lovely film.
  • But also lots of challenges ‘do they really have dementia?’ – still living quite independently, travelling and so on.
  • It’s about friendship, not demetia
  • ‘She shdnt be allowed to chop wood (one memorable scene)
  • The PWD I support aren’t like Agnes and Nancy

Raises interesting questions about perceived authenticity – if someone doesn’t seem to be behaving like PWD, their illness identity gets challenged.

Bartlett, R (2012) ‘The emergent modes of dementia activism’ Ageing & Society

Interesting discussion among audience about both the importance of positive role models but also the pressure they create for other people who can’t be like that because of physical health, cognitive issues, social class, race etc. Ruth: someone with dementia saying ‘I thought I was doing well’ until they saw the Agnes and Nancy film [gulp!]

Ransackers Association – group for PWD – audience member.

 

Hannah Zeilig, UEA

Descartes: Using the arts to educate the dementia care workforce.

Still no clear regulatory framework for the dementia care workforce.

Staff in care home they worked in initially hostile to word ‘Arts’ and also to researchers, seeing them as ‘experts’ coming in to tell them how to do a job they’d been doing for 20 years.

People usually think of Arts hierarchically: Opera, poetry, classical music, sculpture at top. Pop music, tv, comics, cartoons, as lower, not really Arts even.

Tried to get staff to talk about their feelings about their work (in focus groups). 4 themes emerged:

  • Identity of staff as well as PWD
  • Awareness – how to behave sensitively, how to understand the condition
  • Language and communication. Care home staff refered to themselves as ‘bum-wipers’ and PWD as ‘nutters’ or ‘fruitcakes’. Powerful derogatory language. Invented game ‘word salad’ – magnetic words. As way of conveying that we all struggle with language sometimes
  • Practice of caring – lifting, toileting, moving, feeding.

So then researchers went away to find Arts resources addressing these themes. Everybody on staff wanted music.

[Frustratingly, at this point I had to leave, so I don’t know what happened next! I’m planning to contact the authors to find out though and I’m sure they’d welcome enquiries from anyone else who is interested]

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