Working together: Shared
occupations of people with
dementia and carers
Stephen Wey, Katie Egdell, Efterpi Theocharous
Carly Brewster, Joanne Tuffs, Kelly Williams,
April Dennehy
The project
• SCoRe project (students as co-researchers)
• PhD project
– Dr Nick Pollard
• Question - How do people with dementia and
their carers actively collaborate to coconstruct shared occupations that facilitate
their meaningful participation?
Research context
• ‘Very little research exists on persons
with dementia doing things together
with others, either with persons without
dementia – such as other family
members or professional staff – or with
other persons with dementia’
– (Hydén, 2014, p115)
Research context
• Vikstrom et al (2005, 2008) – tea making
• Van Nes (2012) – walking as couple
– Co-occupation
– Pierce (2009) describes co-occupations as a
‘dance’ between the occupations of one
individual and another that sequentially
shapes the occupations of both persons.
• Majlesi & Ekstrőm (2016) – baking –
conversation analysis methodology
Methodology
• Grounded Theory (Harker and Kerr, 2015)
– Both a qualitative methodology and a set of
methods for data analysis
• Microanalysis (Griffiths, 2013)
• Enactivist epistemology (Di Paolo, Rhohde &
De Jaegher, 2014)
– Focus on meaning as constructed within embodied
& situated human activity (praxis)
• (Moves away from some of the tensions between
constructivist and realist epistemologies)
Methods
• Why video?
• Fine detail – frame by frame, rewind, pause
– Enables microanalysis of data
• Captures dynamics of transactions between persons and
environment
• Enables identification techniques and actions used by
participants
– Within ecological context
• Participants had control of the camera
– naturalistic enquiry
– active participation – occupational justice
– enacted consent
Consent as an enacted process
• Nuffield council on bioethics
(2010)
• Dewing (2009) - Process consent
• Brookes, Savitch and Wey (2012)
• Participatory action research
Data Collection
• Dementia Café in region
• Participant information sheet in everyday language
– Follow up week later
• Home visit made to couples interested in taking part
– Consent forms given at home
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At least 1 week to review the sheet and form
2 couples recruited (one dropped out due to ill health)
Participants could choose occupations (within criteria)
1 couple (father and daughter) video recorded
themselves baking cheese scones
• Follow up feedback questionnaire – consent and
participation revisited
Themes and scenes
‘How was the occupation co-constructed
meaningfully by both participants?’
• What emerged from the data was that meanings for both
participants were co-constructed and enacted within the
occupation as a performance on 2 levels:
• Thematically – themes, subthemes, connections, over
arching themes
• Enactively – the occupation as a process comprised of a
series of scenes & interludes, with a stage, actors, props,
backdrop, setup
– (Goffman –> life as performance -> occupation as a
performance)
The stage, the cast
• We will introduce participants as Arthur (late 70s)
and Jane (40 something)
– pseudonyms
• Arthur’s own home kitchen
– Lives with wife
– Regularly bakes with both wife and daughter, who
lives nearby
• Filming took place in home kitchen
– baking cheese scones with daughter this time
– Also obtained a second recording of the whole family
playing Scrabble (could not analyse due to time
constraints)
Working together: Shared occupations
of people with dementia and carers
Overarching theme 1 “You play your part, I’ll
play mine”
1. Promoting
Personhood
2. Promoting
Inclusion
3. Maintaining
Relationships
(Wey, Brewster, Tuffs, Williams, Egdell,
Dennehy & Theocharous, 2017)
1. Promoting Personhood
• How Arthur was enabled to contribute actively to the occupation by
acknowledging and validating his pre-existing skills and working to
promote his personhood and selfhood.
• “Up/Down Playing”
 Jane asks Arthur to rub butter into flour: “if you (.) do your magic with
your fingers and rub it in all nicely for me.” Then follows by saying “I
can’t (.) my hands are too warm. I’m not good at that.”
• “Backdrop”
• References to “behind the scenes” information about P1’s
personhood.
 “Have you made any omelettes recently dad? You make a good
omelette don’t you”
• “Embodied modelling and selfhood”
• Gathering the dough – carer tried to prompt verbally, then shifted to
using her body to facilitate his body, working briefly as one (Kontos,
2014)
Microanalysis
2. Promoting Inclusion
• Both participants worked actively to maintain a
collaborative partnership within the occupation
– e.g. use of ‘we statements’, continuous negotiation of roles
• Parallel Tasks – dividing up roles
– Doing the same tasks together
– Doing different tasks at the same time
– Arthur does while Jane gives feedback and guidance
• Modulating demands dynamically
– e.g. Shifting between tasks and discussion, dynamic alteration of
facilitation level and form, grading and pacing
• Constructing the Environment
– Organising items in a dynamic hierarchy of use
Scaffolding
(Hydén 2014)
3. Maintaining Relationships
• “A shared world of meaningful doing”
• The participants actively engaged in the activity in a way which
facilitated the maintenance of their father-daughter relationship
• Positive impact on the success of the occupation and allows a truly
meaningful experience of occupation.
•
Signposting
–
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acts on prospective memory as part of a ‘collaborative cognitive ecosystem’
(Hyden, 2014).
Mirroring
–
•
“right!”
Created on a linguistic and embodied activity level – creates shared
consciousness
Thinking and doing as one
Hasselkuss & Murray (2007) refer to
occupations as “meeting places”
Co-occupation (Pierce, 2009)
–
completion (sentences, actions)
–
speaking out loud
–
family centred speech - talk about the family, talk using language of the
family culture (‘family colloquialisms’ or Idiolects)
“I’ll just blob it on…”
Overarching theme 2 –
Awareness of Research Context
• Participants acknowledged and valued their active role within the research
process while baking
 Arthur inquires about ‘Stephen’ and student coming back later
 Jane: “I think they’re coming back to taste your scones dad”
 Arthur: “Ooh well they better be good!” (both laugh)
• (a) baking cheese scones (b) being participants in research
• Both elements contributed to the meaning of the occupation as enacted
• Pride
• Contribution (research, others with dementia)
• Consent (active)
• Importance of research paradigm and epistemology
• Promoting participants as co-researchers (Brookes, Savitch and Wey (2012)
• Feedback questionnaire
• An enfolded occupation? (Bateson, 1996)
Comparison with other studies
‘In the examples presented in this study, the
person with dementia is not a passive receiver
of care but a collaborator who is expected by
given directives to possess and exhibit certain
abilities and knowledge to perform the
instructions’.
– Majlesi & Ekstrőm (2016), p45
Scaffolding
• Scaffolding (Wey, 2006: Hyden, 2014; Gjernes & Måseide, 2015) – An
interactive and collaborative process which aims to elicit actions and
meanings from the person who is less able, to provide a just right challenge
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Interactive turn taking
Shared field of attention
Changing the pace and grading of tasks interactively
Allowing the person time to find words or complete an action, facilitating and
validating their expertise
Handover
Dynamically alteration of environment, cues and prompts depending on
performance, including embodied cues
Use of questions to draw attention to feedback
Use of memory strategies such as verbalisation strategies, chunking and
semantic cueing
• Ecological perspective on cognition and occupation (Wey, 2006: Dahlbäck,
Kristiansson & Stjernberg, 2013)
Co-Occupation
• ‘Dance’ of activity and interaction very evident
– Fluid and sequential interweaving of speech and action
• Working and thinking as one
– Co-construction – intersubjective meanings created and negotiated in
and through activity – meeting of minds
– Co-performance – sequencing as occupationally distributed process
(signposting) – coordination of motor skills (working as one on
embodied level) - ‘collaborative cognitive ecosystem’ (Hyden, 2014)
• The ‘telepathy’ of the occupation
– deeper level of language – language of doing (Wey, 2002)
• Doidge (2012) – identified 4 categories of co-occupation - 'doing
with', 'doing alongside', 'doing for’ & 'doing because of’
– Doesn’t quite capture what we are seeing – scope for expanding ‘doing
with’ to include facilitation of doing or new category?
Practice implications
‘It can be difficult when working
with people who have cognitive
difficulties to get the right balance
between person-centred facilitation
and simply ‘taking over’ in a way
that disempowers the person.’
– Capstick, 2004
Occupational science perspectives on the
person
• Important to move away from focus on
independence to also valuing interdependence
(Dickie, Cutchin, & Humphry, 2006)
– And its importance for well-being and belonging –
occupational justice
• Recognising the importance of connections and
transactions
– Ecological perspective
• Complexity of occupation (Fogelberg and Frauwirth,
2010; Lazarini, 2005)
What does this study add?
• This study supports a focus on interdependence and
relational/ecological approaches within dementia
practice
– Embodiment
– Scaffolding
– Co-occupation
• Will help inform facilitation strategies for people working
together to promote the participation, personhood and
relationships of people with dementia and their carers
– Valuing skills of carers and people with dementia
– What can we learn from them?
• Active participation in research process, enacted consent
Where next
• Deeper analysis of same data set
– In particular want to explore further the enactivist
structure of the occupation
• Comparison with additional data sets
– Some already filmed, some more to collect
– More focus on video as journaling process
– Different types of occupation (e.g. creative, sport) and
relationship (formal, friend, other PWD)
• Overall aims – what is enablement, how does
enabling someone with dementia to participate
happen?
References
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