1. Broadening Our Understanding of Good Home Care for People with Dementia: Implications for Occupational Therapy
Dr Lucy Perry-Young, University of Nottingham
Royal College of Occupational Therapists, Annual Conference 2017
Monday 19th June 2017
Introduce self – nursing – research – OT
Recent study – BOUGH – and possible implications for Occupational Therapy
As new to OT, wanted to use as opportunity to ask all of you about dementia home care and get ideas on taking this project further

2. Disclaimer
This presentation summarises independent research funded by the National Institute for Health Research School for Social Care Research. The views expressed in this presentation are those of the author(s) and not necessarily those of the NIHR SSCR, NHS, the National Institute for Health Research or the Department of Health
Funding
Views of research team

3. The research team:
Professor Justine Schneider, University of Nottingham (UoN)
Dr Kristian Pollock, UoN
Dr Nicola Turner, UoN
Dr Lucy Perry-Young, UoN
Dr Samantha Wilkinson, Manchester Metropolitan University
Dr Cheryl Travers, Loughborough University
Dr Anthony Kelly, UoN
Professor Nick Manning, King's College London
Dr Kezia Scales, Director of Policy Research at the Paraprofessional Healthcare Institute, US
Based in Nottingham but working with colleagues in Loughborough, Manchester, London and the US

4. Structure Introduction The BOUGH study Methods Findings
Participant observation
Diary methods
Findings
Implications for Occupational Therapy
Discussion of Occupational Therapy involvement in home care delivery
Context to home care nationally.
Introduce the BOUGH study and what we aimed to find out.
I’ll discuss some of the methods we used in the project but I will focus on just two of these: the participant observation, in which my colleague Sam and I worked as home carers for 11 months, and the diary study, in which care workers kept reflective diaries of their everyday working lives.
I will then briefly outline some of our findings but I also wanted to focus on some further ideas about how this work might relate to Occupational Therapy and introduce an idea for further research in this area.

5. Introduction
The poor quality of home care has been highlighted recently by the media, dementia charities and unions
OTs in short term rehab- focussed home care programmes only
To set the scene about home care:
Vast majority provided by independent sector
Workforce predominantly female, on low wages, and tend to have few qualifications.
Recent Alzheimer’s Society survey found that
More home care workers in England than all of the doctors and nurses in the NHS combined.
Majority of the people receiving home care services have dementia
1 in 3 home carers have no dementia training.
There is currently a lot of attention paid within the media and national reports which are calling for improvements in home care, especially in the area of dementia training.
Recent media coverage, such as the dispatches programme, has highlighted shortcomings in home care provision including:
Brevity and ‘clipping’ of visits
Poor employment terms and conditions
High staff turnover
Lack of opportunity for training
Variable quality and regulation of services
On a positive note, there seems to be a slow but steady progression towards a more recognised career path for paid carers including greater accountability and better training opportunities.
In terms of occupational therapy, a recent review of dementia service provision for people with dementia across Europe found that while OTs in the UK are involved in short term, rehab based roles, such as intermediate care teams and re-ablement programmes, they are not routinely involved in ongoing and long term home care (Hallberg et al 2016).
This is not the case everywhere though and it seems that OTs have much greater involvement in home care in the States (Cheney 2011)
(Alzheimer’s Society, 2016)

6. The BOUGH study
Aim: to determine what ‘good’ home care looks like for people with dementia
Past 2 years
Based at UoN
Aim
Appreciative inquiry so chose home care organisation with a very positive reputation
Prided themselves on
1 hour visits
‘Matching’
Dementia training

7. 1. Interviews with home care staff
Methods
1. Interviews with home care staff
2. Interviews with home care clients
3. Job analysis: interviews and documents (contracts, local policy)
4. Participant observation
5. Diary keeping by home care staff
[talk through slide]

8. Participant observation
Conducted field work for 11 months
Working flexibly – mainly mornings and evenings
‘Personal care’ and ‘companionship’ visits
Variety of home situations and care arrangements
Sam and Lucy
Sam and I worked as home carers for 11 months
Same training as other carers and had 7 clients between us
Soon found we had to be very flexible with our hours - majority of the visits are early mornings and evenings
The company seemed to classify visits as either ‘personal care’ or ‘companionship’ visits, and we each had experience of both of these, though, in practice it was usually a combination of the two.
As the project is specifically looking at home care for people with dementia, all of our clients had dementia or ‘memory problems’
Range of home situations and care arrangements
Some lived alone, others with spouses or other family members
Some had care 3 times a day and others had only one visit a week
Our visits were between an hour and 3 hours.

9. Diary keeping
Diaries get us “up close” to peoples’ lived experiences, yielding rich data free from retrospective bias
3 training sessions held
Recruited 11 home care workers to keep reflective diaries of their working lives over 8 weeks
Written and audio formats offered to suit caregiver preferences
Cheryl Travers
Led by Cheryl Travers from Loughborough University - experienced in using diaries in research
Background in occupational psychology and has used diaries in different settings as a way of getting an understanding of people’s working practices
Using diaries gives quite a unique perspective as they are written straight away, without an immediate audience, and are kept over a period of time so it is possible to see changes over time.
Cheryl led 3 training sessions for caregivers to keep diaries for 8 weeks
19 caregivers attended - 11 of these went on to keep diaries.
Audio diaries, digital version – most kept physical copy [pass round]

10. Findings
Skills – Practical skills (cooking, cleaning, general maintenance), communication, balancing autonomy and risk, and resilience
Authenticity of relationship
Lifestyle impact – Worrying, unsociable hours, dead time, health, and unguaranteed work
Rewards of caregiving – Praise, friendship, and satisfaction in going above and beyond
High level of skill and sensitivity - As well as the practical skills that you might expect, they also displayed skills in communication and negotiation
They demonstrated skill and tact in the way they avoided asking direct questions of people with dementia. It is quite difficult to avoid asking the questions that we all quite naturally ask as part of normal everyday conversations such as ‘what have you been doing today?’ which might make people with dementia feel frustrated or embarrassed when they can’t remember
Carers are often required to use their initiative in order to balance the client’s autonomy with certain risks. For example finding ways to persuade some clients to let them throw away old food which could make them ill.
Care work also often requires resilience on the part of the carer and need for a ‘thick skin’
Some clients physically and verbally aggressive carers
but there were also much more subtle insults which caregivers happily ‘took on the chin’
Authenticity of the relationship between carer and client - something quite conflicting about being paid to care
On one hand - encouraged during the training for carers to develop relationships and strong bonds with clients and their families, and in most cases this is almost inevitable when you spend so much time with them in their own home.
Yet, on the other hand, carers are aware of
their responsibilities to get certain tasks done during their visit and to keep the client safe
Time limitations and their very busy schedule, conscious of the need to get straight to their next visit
Aware that client is paying for their time - ‘gets their money’s worth’
This contrast in the authenticity of relationship was also seen when a client died. One caregiver, who viewed her client like a family member, reported both grieving for the loss of the client, yet at the same time, feeling guilty for worrying for their loss of hours and earnings.
Caring had quite an impact on the lifestyles of carers.
Care required at meal times – long days, with unpaid ‘dead time’
Often skip meals, have little opportunity for exercise and snack in cars
Affects time they get to spend with their own families, hours were not guaranteed and carers sometimes faced hours being cut substantially with very little notice.
Carers also worried about clients when they were not with them and many spent some of their wages buying gifts for clients or cakes and biscuits to take with them to their visits.
Despite these difficulties, carers described many rewards of caregiving, including receiving praise, building friendships and a sense of satisfaction from ‘going above and beyond’ their duties. ‘Doesn’t feel like work’ and enjoyed independence of managing own visits and schedules.

11. Findings – implications for Occupational Therapy
Carers were found to:
Encourage cognitive stimulation
Encourage motivation
Enable and promote meaningful activity
Supported clients to maintain and contribute to their personal relationships with family, friends and communities
Potential secondary analysis of data
Stress not an occupational therapy study – none of the research team are OTs – never the intention to look specifically at how carers work with their clients in terms of meaningful occupation and purposeful activity.
But the data has certainly showed that the carers, at least within this organisation, did do a number of things which resonate strongly with the principles of occupational therapy;
They encouraged cognitive stimulation, taking magazines and newspapers to stimulate discussion or doing crosswords together
Encouraged client to be motivated towards engaging in activities, which often involved simply reminding them of the things they enjoy
Enabled and supported them to engage in such activities, such as gardening, shopping, baking and socialising
Supported them to maintain and contribute to their personal relationships with family and friends – e.g. - of the diarists remembered the birthdays of her clients close family and friends and would make sure that she reminded the client to buy birthday cards when they were out together. She also helped the client to bake cakes for them, something the client had always done before, but now would not remember to do so on her own.

12. Final Thoughts
Care work entails more than person-centred care, it entails relationship-centred care
Caregiving is poorly paid and work is not guaranteed. It can have a significant impact on lifestyle and personal relationships
Care workers navigate complex situations and relationships with skill and sensitivity
Carers skilfully attending to occupation in their roles – Potential impact of greater Occupational Therapist involvement?
To summarise then,
We conducted a study aiming to describe what ‘good’ home care looks like
We worked within one organisation over two years and used several methods to gather data
I have described findings from just the participant observation and the diary keeping parts of the study which showed that:
Caring for people with dementia in their own homes involves a relationship-centred, and often family-centred approach.
Carers are poorly paid and work is not guaranteed. Caring can have a significant impact on the lifestyles of carers, yet they find their work largely very rewarding.
Carers negotiate complex situations and relationships with skill and sensitivity
And carers seem to be paying attention to occupation within their roles and helping their clients to maintain occupational identity.
OT involvement in dementia care is currently in the form of short-term rehab focussed care. But progressive nature of dementia raises the question about the scope for greater occupational therapy involvement in the long-term care of people with dementia in their own homes.
I wanted to use this presentation as an opportunity to ask for your opinions on this.
As I said I am very new to occupational therapy but there is a possibility that I could do a secondary analysis of the data we have gathered to explore the way that carers attend to occupation and meaningful activity. Pragmatically, it is unlikely we will start to see OTs working alongside all home care organisations, but could there be a role for OTs becoming involved in the training of carers or to more regularly and routinely assess the people living at home with dementia and advise carers on meeting the occupational needs of their clients?
So I would really like to hear your opinions on this and on the current provision of dementia care in occupational therapy in general.

13. References
Alzheimer's Society. (2016). Fix Dementia Care: Homecare. Alzheimer's Society.
Cheney, p. (2011). The dementia dilemma: strategies for home care treatment. Home and Community Health, 18(3).
Community Care Statistics : Social Services Activity Report, England (2013) 46, fig. 4.5.
Dewing Participatory Research: a method for process consent with persons who have dementia. Dementia. 6(1), 11-25
Hallberg, I. R., Cabrera, E., Jolley, D., Raamat, K., Renom-Guiteras, A., Verbeek, H., Karlsson, S. (2016). Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care. Dementia, 15(5),
UNISON. (2013). Time to care: a UNISON report into homecare. London: UNISON.

14. For more information on the BOUGH study, please visit:
Thank you,
For more information on the BOUGH study, please visit:
A recent blog. . .