Broadening Our Understanding of Good Home Care for People with Dementia Dr Samantha Wilkinson and Dr Lucy Perry-Young Home Care Research Forum Wednesday 14 th December 2016
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
From left to right: Sam, Lucy, Kristian, and Justine
PI: Professor Justine Schneider Co-applicants Dr Kristian Pollock, University of Nottingham Dr Anthony Kelly, University of Nottingham Professor Nick Manning, King's College London Dr Cheryl Travers, Loughborough University Dr Kezia Scales, University of North Carolina at Chapel Hill
Structure Introduction Methods Participant observation Diary keeping Ethics Findings Skills Lifestyle impact Rewards Conclusion
Introduction In the UK, two thirds of people with dementia live in the community (Alzheimer s Society, 2016) Most home care is provided by the independent sector (89% in 2012, compared to 5% in 1993) (Community Care Statistics, 2013) Gross annual public expenditure alone on older people s homecare in 2011-12 was an estimated 3.2 billion. There are 6,830 home care agencies registered with the Care Quality Commission in England but many more possibly one third, are not registered.
Introduction Home care involves: Domestic tasks Shopping Home maintenance Personal care Enabling access to the community Social activities Rehabilitation and recovery Palliative care
Introduction Recent media coverage has highlighted: Shortcomings in home care provision, including the brevity and clipping of visits Poor employment terms and conditions High staff turnover Lack of opportunity for training Variable quality and regulation of services http://www.channel4.com/programmes/dis patches/on-demand/61826-005 Once travel time was factored in our reporter was paid just 3.89 an hour
Introduction Aim: to determine what good home care looks like Specifically: What do home carers do in practice for people with dementia? What does it feel like to give and receive home care? How are home care relationships experienced by care workers and recipients? What are the stresses and rewards of working with people with dementia in home care? What key factors appear to influence home care quality?
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
Participant observation Conducted field work for one year Working flexibly mainly mornings and evenings Personal care and companionship visits Variety of home situations and care Sam and Lucy arrangements
Participant observation Info packs Demonstrates capacity Visit client and family member Lacks capacity Seek assent Seek assent Seek consultee advice Visit to obtain consent Start fieldwork
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
Ethics Dewing s (2007) process consent method: 1.Background/preparation, 2.Establishing the basis for capacity, 3.Initial consent, 4.Ongoing consent monitoring, and 5.Feedback/support.
Ethics C3 also recently felt out for my name badge and questioned whether I get paid from PA now?, the fact she recognises I didn t originally shows she has some recollection of my dual role. I use incidences such as this to briefly mention the study again. I leave newsletters at C3 s for both her and R1, and also the care workers I am shadowing as a reminder about the study. (SW Field notes, C3)
Ethics - Challenges faced Tensions between study ethical requirements and needs of the busy home care providers. Understandings of capacity, as well as when and how consent should be taken, appeared to differ between researchers and providers More difficult to assess understanding with some clients than others Not possible or desirable to explain the study on each and every visit to assess capacity Informing caregivers
Findings Skills Practical skills (cooking, cleaning, general maintenance), communication, balancing autonomy and risk, and resilience Lifestyle impact Worrying, unsociable hours, dead time, health, and unguaranteed work Rewards of caregiving Praise, friendship, and satisfaction in going above and beyond
Findings - Skills I assisted C3 through to the sitting room. She asked which way, left or right. It is interesting how well she responds to directions like this, but if you say bedroom, or kitchen, or sitting room it will confuse her. (SW Field notes 29.07.16) It was really hard to have a conversation without asking questions. W72 said she sometimes asks a question (such as where did you get married? ) and then thinks that she shouldn t have asked that as C29 might not remember and she doesn t want her to feel silly for not knowing. (LPY Field notes 01.08.2016) A lot of the stories C6 pre-empted with I have probably told you this before. Whether or not W21 had heard these stories before (I presume she had), she did a very good job of acting as if they were new. (SW Field notes 13.07.2016)
Findings - Skills She took the tablet and I said so it s probably best to get in the shower first today since you have to wait anyway. She said No I think I'll wait until later. I persisted, Well you might as well as I won't be here later to help you and you can't eat or drink anything for 30 mins anyway. She considered this but then spoke about the garden again. After a minute or so I said I think we should go and have your shower now while we are waiting. I said this in a bit of a cheeky way and said I'm being bossy today. She laughed and said 'is it your bossy day?'. She seemed to find it funny and it worked as she then said she would. I m never usually so persuasive with C27 but I think it worked well today to do it in a humorous and cheeky way as that seems to appeal to C27 s sense of humour (LPY Field notes 3.7.16).
Findings - Skills It seems that all caregivers throw away bad food, often without telling the client, if they think the client would not approve. This happens even though it is quite clear during the training days (both at PA and PB) that we are not to throw away food without clients permission. I suppose that caregivers feel this is not always an appropriate policy and use their own judgement about when to apply it. I certainly do this myself. I would not covertly throw away any food from a client who I believed had the capacity to weigh up the risks. Yet I regularly throw food away that is in my opinion not safe to eat from my clients and I do this without asking if I think it will distress or confuse them. (LPY Field notes 01.08.2016)
Findings Lifestyle impact Still feeling quite emotional over the death of one of my clients who I had been with for [a long time]. She was one of my first clients, & on my first meeting she said when she saw me God had sent me to come for her & she knew she would now be fine (she had a bad experience with another care provider) & her words will stay in my heart always, and she was very special to me. Maybe I should not get so close to people, but I know in this job its hard not to and I feel caring comes from my heart. Also I m getting worried my hours I work have been halved as I did most of my calls with this client, I feel bad thinking this [as] I d rather have my client, but financially I will be worried for a few months. One of the downfalls of this job & not being on a contract. (D11)
Findings Lifestyle impact I seem to get a lot of client visits cancelled short notice due to family taking them out for dinner or taking away for a bit. Which is lovely for the client but for me it means a loss of earnings at short notice. I really love this job & want to make it work for me but I m desperate for more hours.(d6) Since I lost my regular in December I have not had many hours at all. I was going into a call at [place name] but after the husband died (he was end of life) I haven t been asked to go. I am not too worried about this as I seemed to be using a lot of fuel so it seems all my money I earnt was going on fuel. I felt at the time that I was the only one available to go in when they sent me, or there was no-one else available to go so I was sent when it was convenient. (D2)
Findings Lifestyle impact Then I have an hour to kill so I end up in a café again, spending most of what I just earned. That happens so often. I am getting fat again. Too many latte s, which I am having with a little scone or some such treat. (D7) D6 also expressed that the time in between visits can be quite annoying as she often has an hour in between and so she goes home but has to go back out again very soon. She said this can be quite confusing for her little boy. (LPY on meeting with D6) I wasn t seeing my family at all, or having an evening meal with them. I wasn t able to do things I enjoyed e.g. going for a run after work, or catching up on the soaps. I asked the manager if I could not work on a Tuesday evening so I don t have so many evening calls consecutively (SW Field notes)
Findings - Rewards She has her sparkle back, when she was younger she had a great sense of humour & it shines through still, we have fun & she giggles, she hates to be washed but I make it fun, singing & she laughs which I love to see. I ve been calling her walking frame her bat mobile & she chuckles, this is what makes my job rewarding & worthwhile, when I feel I ve made someone happy & made a difference (D11) Her son A says I m part of the family now and I think E now thinks I am. (D3)
Findings - Rewards Client gave me a big hug as I left - & said she felt better. Just a short gentle visit had made a difference to the client s day occasionally worthwhile remembering [the] difference we can make not getting full of ourselves but acknowledging what we do. (D8) She said goodbye and told me you take care out in the cold (LPY Fieldnotes 23.02.2016)
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 Many care workers go above and beyond the call of duty, treating clients like family members; taking work home with them; and using their own money to treat clients Care workers navigate complex situations and relationships with skill and sensitivity
References Alzheimer s Society. (2016). Dementia 2014 Report Statistics. [Online], Available: https://www.alzheimers.org.uk/statistics [2 June, 2016]. Community Care Statistics 2011-12: Social Services Activity Report, England (2013) 46, fig. 4.5. Dewing. 2007. Participatory Research: a method for process consent with persons who have dementia. Dementia. 6(1), 11-25
Thank you, For more information on the BOUGH study, please visit: http://www.nottingham.ac.uk/research/groups/dementia/projects/bou gh/index.aspx