Moving stories
Digital storytelling and
fictional drama in dementia
awareness training
Nicole Matthews,
Media and Cultural Studies,
Macquarie University
Naomi Sunderland, School of Health,
Griffith University
What’s cooking?
The promise of storytelling & the problem of listening
2. Dementia care training: reshaping “testimonial
sensibility”
3. Challenges of teaching with digital lives
4. Fictional stories: doing care beyond “awareness”?
1.
1. The promise of storytelling
& the problem of listening
• ACMI and Centre for Digital Storytelling: “audio-
visual vignettes of approximately two to five
minutes in length which present a first-person
voiceover in conjunction with visual material
sourced from the personal archive of its author,
edited together on consumer-grade computers and
software” (Poletti, 2011, 74)
• “Short, personal multimedia tales told from the
heart” (Meadows, cited in Rossiter and Garcia,
2010, 37)
• A wider sense as used by Nick Couldry 2008
Digital life narratives: digital literacies,
social capital, participation from creation
CDS: “assists youth and adults around the world in
using digital media tools to craft and record
meaningful stories from their lives and share these
stories in ways that enable learning, build
community and inspire justice… sharing and bearing
witness to stories can lead to learning, action and
positive change”
(from Centre for Digital Storytelling website)
The promise of repurposing digital lives
• “We think of the facilitators as social issue-
focused artists/activists creating work to help
agitate and advocate for change in policy”
(Lambert, 2009, 85)
• “life-stories have the capacity to provide
feedback to staff, managers and researchers
working in the intellectual disabilities field.”
(Hamilton and Atkinson, 2009, 321)
• “participant-produced digital stories constitute a
rich and relatively unexplored source of
qualitative data.” (Rossiter and Garcia, 2010, 49)
Why reflection but not listening…?
Listening: under-discussed in comparison to questions of voice (O’Donnell,
Lloyd and Dreher, 2009)
• …in digital storytelling and life history contexts:
• Emphasis on “ordinary people” – displacing
media gatekeepers, “the expert” “the
professional”
• Many-to-many model of dissemination
• Commitment to a holistic approach to
individual life stories
• Ethical concerns in re-purposing life stories
How are digital life stories used in
(higher) education now?
Emphasis on reflection and the reflective
practitioner
•
digital storytelling used to reflect on the
practitioner’s own experience.
•
Little or no evidence in health education
(or indeed much elsewhere) of use of
stories in other ways
Why try to use digital stories
differently?
•
“Digital storytelling is part of a wider
democratization, a reshaping of the hierarchies
of voice and agency”
(Couldry, 2008, 383-4)
•
The disability movement:
“Nothing about us without us”
•
“It is exhausting to… tell our story over and
over again” (Anderson in The Guardian, July 2,
2013)
•
Ubiquity of life narratives in Web 2.0
Learning to listen to life stories: a case study
• SA and NT Dementia Training Study Centre, one of 6
state based DTSCs, each centre with a different focus,
eg younger onset dementia; initial diagnosis
• Collection of digital stories by people with dementia
and their families in 2009. 6000 copies distributed.
• One of a range of audiovisual resources
• Used for
• in-house training of health professionals;
• fifth year medical students;
• nursing, psychology and health students;
• initial and institution based in-service training of
aged care workers
Methodology
• Interviews with trainers: 7 individuals (6 within
DTSC), one focus group discussion
• Online survey to those who bought or ordered
the DVD: 6000 distributed, 9 responses!
• Trainers in aged care facility (3), one also working in
TAFE; clinical practice trainers based in hospitals (2);
one social worker with a mental health specialism,
one clinical nurse based in residential care (8
answered this question)
• 5 out of 8 over 10 yrs experience
• Most acquired DVD for professional education but
also for training
• Participant/observation in one training session
with 5th yr medical students.
Consequently, offers
some insights into
listening, but mostly
from the perspective of
the teacher/trainer.
Some reasons for the
absence of work on
listening?
Listening as central to dementia care education
• “People living the experience are telling and showing
us most of the time what they need if only we want to
listen” (Sheard, 2008, 25)
Four uses of lifestory work in dementia care
a.
“Remininscence work” as a meaningful
activity for people with dementia
b.
Lifestory books for care and care planning:
“Learning about a person’s past helps our
understanding or interpretation of present
behaviour” (dementia care trainer P)
c.
Life stories and testimony of people with
dementia incorporated into dementia
awareness training
d.
Reflective lifestory work by the health and
social care workers as part of dementia
care training
2. Dementia care training: reshaping
“testimonial sensibility”?
“Testimonial sensibility”:
• “incorporates a variety of intellectual skills and virtues that govern how
much credibility the responsible hearer will attribute to different sorts
of speakers in different sorts of circumstances” (Fricker 2003 154)
How does dementia care
training use video
storytelling to train listening?
Aim of dementia care training
“When you train, what they want
more than anything from you as an
educator, the biggest thing they
want is, ‘Tell me how to manage
these behaviours, just tell me how
to manage them.’“ (W2)
“I say to them, what is dignity in care, what is dignity and respect, care for
people? They say all these clichéd responses… Then I use some examples and
say… ‘I really like walking outside in thunderstorms, especially summer
storms, and I love being outside in the summer rain. Would you let me do that
if I had dementia?’ No, you might get a cold. But that's dignity in care. They're
things that I did pre-dementia. Why can't I do those things after dementia?”
(D2)
Why digital life stories rather than a person?
“That’s just invaluable having someone right
there that you can touch, but the reality of
that is getting that person. Again it’s got to be
the right person, right time. That’s a hard gig”
(W)
“The reason we developed [Visual Stories] was
because you couldn't always pull a person
with dementia out of a hat and bring them to
a training session, and it's not always
appropriate. … it also puts them in a
vulnerable position to open themselves up to
providing information that either wasn't safe or
that just went down the totally wrong track”
(M)
• “The involvement of people with a dementia in dementia care training has so far
been very limited – usually to case studies, video excerpts and occasionally
direct one to one interview of people experiencing a dementia in front of an
audience” (Sheard, 2008, 25)
The value of teaching with digital life stories:
a. Replacing related life experience
• “I've been doing some training with some pre-
entry students that have had no experience in
aged care whatsoever, been on the dole for the
past X amount of years and this is their re-entry
into the workforce again… what I've found with
those students - and I've done a few of their
trainings now - is that this is where the videos
and things really come into their own” (D1)
• “if somebody has had no experience in the area
whatsoever, if I get up and talk too much about it
I'm going to lose them and they're not going to
follow what I'm saying, whereas if they can see it,
it's a lot more helpful to them. “ (D2)
b. Challenging pre-conceptions
• “when you show them a resource it gives a face to
the condition … they've already got the picture, it's
an old, decrepit person in the nursing home, that's
who you're talking about…. Then when you show
them someone that's quite young and still talking
very well, they're articulating very well what their
feelings… you stop that and say to people what do
you think? Quite often the first thing that people say
is ‘they're very young’. And it's like oh gosh, I'm that
age” (D1)
“it's an image that creates the response” (N1)
Q12. “What sticks in your mind about the stories on the DVD?” “That dementia can
happen in the early 40s” (203.26.122.8)
c. Encouraging person-centred perspectives
• “It is important to provide holistic
person centred care to understand
the person with dementia” (Q39.
203.25.122.8)
• “I believe staff are developing a
better appreciation of the person
behind dementia and not so
focussed on dementia itself”
(respondent 203.188.154.130)
d. Offering convincing authenticity
• “real [stories] are better – realistic,
facts and emotions” (203.26.122.8)
• “real people – real stories have more
of an impact than just those who talk
statistics” (210.18.236.46)
• “utilising real people is most effective
“ (210.18.236.46)
• “the real thing’ often has more of an
impact” (203.188.154.130)
“Patients are people with a history &
something to lose” (5th year med student)
• Emphasis on the continuity and on the feeling self.
• “I use David. I love it because he is not an actor. He’s a real person
with dementia … He’s speaking on behalf of himself and I start
with that... He’s the voice of people with advanced dementia. If
we can take his words – he’s still able bodied, he’s still able to go
out in public, he’s able to be quite semi-independent and yet still
he feels like he has no control over his life. He’s scared, he
becomes disorientated so he’s feeling that in early stage. If he’s
feeling that then, gosh, he’s going to feel exactly the same things
if not more when he’s lost the voice to be able to articulate that.
” (W2)
Affective listening: for learning
• “the more hard hitting the message the
better… I love shock value, love it, yeah
absolutely” (W2)
• “residential care staff… see a person when
they come in at a certain level of dementia…
they forget this person was a … fully
functioning person at some stage but they
don't see that. And when they see somebody
like David or Cath who can articulate still and
have got all these talents of things they've
done and are doing, it sort of opens their eyes
a bit... A lot of people get quite teary “ (Pm2)
“Not them and us”: lifestory in training
“People with dementia have a similar collection of life experiences to you and I.
Seeing the individual and not the dementia means focusing on the
characteristics that make each one of us unique and different”.
University of Stirling (2012) Best Practice in Dementia Care: Domiciliary Workers,
Part 2, p.9
“Awareness” taught through life story
• Training towards a person-centred
approach to people with dementia:
• They have still feelings, just like you
• They were once a “fully functioning person”
with a unique life experience and personality,
even if they can’t talk about it easily now
Lifestory work with health and aged care workers
“Person-centred ideas that require a new form of professionalism which is
feeling based, being more open with self, reflective and which is all about
joining up the personal and professional…Be ready for people who are
affronted and formally complain about the content of person-centred training
being inappropriately about ‘themselves’ rather than being about ‘others’”
(Sheard, 2008)
3. Challenges of teaching with life story
Listening across difference
“using the visual stories stuff … we sometimes do reduce it to stereotypical
things, so it doesn't actually look or explore the diversity…everyone's situation
is so different and unique… If you're in a training session and you use one or
two things, half the people will say, “Well... what about these people?”
(Dementia trainer, N1)
• “sometimes if you show a film from
residential care in acute care they kind of just
go well ‘we don't do that in our case…’ ” (Pn1)
• “…or if you do raise it, you've got to connect
the dots like you were saying earlier, you've
got to take people through why it's relevant”
(W1)
“Coaxing” stories: listener-led telling?
• “we really wanted to have something that would convey
to the people who hadn't had experience with LGBTI
communities what it's like to live as a marginalised
individual, at fear of discrimination and interestingly,
these people don't go into that, which makes me think
we've chosen people that are quite confident, able to
state their needs and demands without fear of
retribution or persecution. Which is great, but loses the
entire message…” (M)
• [we are] asking them to lay their soul bare and to think
of the horrible things that may happen ” (M)
Affective listening: switching off
• Critiques of tragic narratives from disability activists
• What kind of “quality of lifestory” (Couser, 2013) is
this?
• Dangers of sad stories: “you need to use it well and
debrief it and use it in a purposeful way… you can
actually do damage to staff… why would you want to
work in this area, it’s going to break your heart?” (L)
• “No-one says they want to be a geriatrician” (Pm2)
• Chater and Hughes (2012) – optimism about patients
with dementia characteristic of better care
Dealing with emotions & resistance
• “you can't stir it up and then not be able to
take it anywhere or do anything with it.
That's just destructive” (W1)
• “So I had one woman who just challenged
me the whole day, but her challenging was
purely all about her mother-in-law. It
wasn't about her work environment, it was
personal…
I think she was fighting
within herself and thinking that can't be
the real thing. She can't truly be a nice
person because she's presenting so
horribly “ (W1)
Empathy and critiques
• “passive empathy” (Boler, 2006) and the need for
“epistemological modesty” (Kittay, 2009)
• Empathy as “fellow feeling”?
• “emotions are interpreted most productively not as
affective lenses on ‘truth’ or ‘reality’, but rather as one
important (embodied) circuit through which power is
felt, imagined, mediated, negotiated and/or contested”
(Pedwell, 2012, 176).
Testimonial listening
The already known as a problem in life narratives (Kelly 2008) as well
as a means of communication (Burgess, 2006)
• Testimonial listening: “the reader accepts
a commitment to rethink her own
assumptions, and to confront the internal
obstacles encountered as one's own
views are challenged...What is at stake is
not only the ability to empathise with the
very distant other, but to recognise
oneself as implicated in the social forces
that create the climate of obstacles the
other must confront (Boler, 1999 cited in
Kelly 2008, 18).”
What do “teachable stories” look like?
• Short and “going somewhere” otherwise “what is my
take home message? I think it gets lost “ (M)
• Aesthetics as important
• “Pausable”:
• “was there an opportunity for us to break the story so
that people could use it and say right, so okay, Joy's at
this point. What do you think is going to happen?... as
a care worker if you were confronted with that, what
would you be thinking and how would you respond?”
(M)
4. Fictional storytelling & “awareness”
What do you think is the
“take home message” of this film?
What are some of the similarities and
differences between this film and David’s
story?
Darkness in the afternoon
• Fictional narrative used to
shape identification
• Gothic genre as central
• Horror themes – similarity to
David’s story?
• Awareness still at the centre
• Could you have made this
story with the involvement of
carers?
Doing care beyond “awareness”
The pedagogical value of bad examples:
“ I cringe a little bit with these titles of
relationship centred care and person
centred care, particularly person
centred care because it’s a lovely title
but it’s very easy to go, well I’m a nice
person and so that’s what I do practise.”
(W2)
“unless people are challenged on it, they can look at it and go, ‘That’s what I
already do, I’m very open minded about that sort of thing.’ But just because
I’m open minded about it is that what my body language says?”” (W2)
Reflection as cognitively biassed?
• “the distinction between experience
and reflection imposes both a hierarchy
and a chronology of increasing
detachment. Experience is immediate
but messy… That messiness can be
transcended only through 'a conscious
and voluntary effort to establish belief
upon a firm basis of evidence and
rationality' (Dewey, quoted in Boud et
al. 1985b: 21)…. Through reflection, we
are always getting better. Through
reflection, we partake of the dream of
reason, the Western tale of progress
through rationality.” (Michelson, 2006,
439)
Beyond life story?
• “What does it actually mean to treat somebody with dignity and respect?
They're just words, but in this circumstance you might have an example of
how that's actually done so that others can watch more practically” (W1)
• “these forms of knowledge and feeling are not bound to reflect what
currently exists on the ground (though they certainly may do so), they can
imagine affective relationships that move beyond what ‘we’ already think
we know or feel is true or inevitable” (Pedwell, 2012, 176)
References
• Anderson, Naomi (2013) “Disability care and the NDIS: our readers respond” from The
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Guardian, Tuesday 2 July
Boler, Megan (2006) “The Risks of Empathy: Interrogating Multiculturalism’s Gaze”
Cultural Studies 11(2) 253-73
Burgess J.E. (2006). “Hearing Ordinary Voices: cultural studies, vernacular creativity
and digital storytelling”. Continuum: Journal of Media and Cultural Studies, 20(2), 201214. doi:10.1080/10304310600641737
Kathryn Chater and Nic Hughes (2013) “Strategies to deliver dementia training and
education in the acute hospital setting” from Journal of Research in Nursing 18: 57893
Couldry, N. (2008). Mediatization or mediation? Alternative understandings of the
emergent space of digital storytelling. New Media and Society, 10(3), 373–391. DOI:
10.1177/1461444808089414
G.Thomas Couser 2012 “Narrative Disability inside and Outside the Clinic, or, beyond
Empathy” MLA 2012
Miranda Fricker “Epistemic injustice and a role for virtue in the politics of knowing”
Metaphilosophy 34(1-2) January 2003
Hallahan, L. (2009). Public Testimony: Empowerment or humiliation? The Story of the
Story: Life Writing, Ethics and Therapy Conference, Adelaide: Flinders University
References (cont)
• Kelly, R. (2008). Testimony, witnessing and digital activism. Southern Review, 40(3), 7-22.
• Kittay, Eva Feder (2009) “The personal is philosophical is politics: a philosopher and mother of
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cognitively disabled person sends notes from the battlefield” from Metaphilosophy 40(3-4) pp.606627
Lambert, J. (2009). The Field of Community Arts. J. Hartley and K. McWilliam (eds) Story circle: digital
storytelling around the world. Chichester, UK: Wiley.
Meadows, D. (2003). Digital Storytelling: Research-Based Practice in New Media. Visual
Communication 2003(2), 189-93. doi: 10.1177/1470357203002002004
Michelson, E. (1996). Usual suspects: experience, reflection, and the (en)gendering of knowledge.
International Journal of Lifelong Education, 15 (6), 438-454.
O’Donnell, P., Lloyd, J., & Dreher, T. (2009). Listening, pathbuilding and continuations: A research
agenda for the analysis of listening. Continuum, 23(4), 423-439
Poletti, A. (2011). Coaxing an intimate public: life narrative in digital storytelling. Continuum, 25(1),
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Rossiter, M. and Garcia, P.A. (2010). Digital Storytelling: A New Player on the Narrative Field. New
Directions for Adult and Continuing Education, 126: 37-48. DOI: 10.1002/ace.370
Pedwell, Carolyn (2012) “Affective (self-) transformations: Empathy, neoliberalism and international
development” Feminist Theory 2012 13: 163
David M Sheard(2008) Growing: training that works in dementia care Alzheimers’s society lfrom
Feelings Matter Most series
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