1. Stephen Wey, Katie Egdell, Efterpi Theocharous
Working together: Shared occupations of people with dementia and carers
Stephen Wey, Katie Egdell, Efterpi Theocharous
Carly Brewster, Joanne Tuffs, Kelly Williams,
April Dennehy

2. 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 co-construct shared occupations that facilitate their meaningful participation?

3. 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)

4. 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

5. 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)

6. 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

7. Consent as an enacted process
Nuffield council on bioethics (2010)
Dewing (2009) - Process consent
Brookes, Savitch and Wey (2012)
Participatory action research

8. 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
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

9. 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)

10. 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)

11. Overarching theme 1 “You play your part, I’ll play mine”
Working together: Shared occupations of people with dementia and carers
Overarching theme 1 “You play your part, I’ll play mine”
1. Promoting
Personhood
3. Maintaining Relationships
2. Promoting Inclusion
(Wey, Brewster, Tuffs, Williams, Egdell, Dennehy & Theocharous, 2017)

12. 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

13. 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)

15. 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
acts on prospective memory as part of a ‘collaborative cognitive ecosystem’ (Hyden, 2014).
Mirroring
Created on a linguistic and embodied activity level – creates shared consciousness
Thinking and doing as one
completion (sentences, actions)
speaking out loud
family centred speech - talk about the family, talk using language of the family culture (‘family colloquialisms’ or Idiolects)
“right!”
Hasselkuss & Murray (2007) refer to occupations as “meeting places”
Co-occupation (Pierce, 2009)
“I’ll just blob it on…”

16. 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)

17. 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

18. 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
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)

19. 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?

20. 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

21. 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)

22. 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

23. 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?

24. References
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