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Home care: An insider's perspective

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approaches to dementia care, care services and care homes

Jean stopped in the hallway and suddenly said ‘Do you like books?’ I said yes, I enjoy reading, do you? She walked towards the door to the room I had not yet been in and opened it quickly and widely to dramatically reveal a huge book case the length of the wall. I really wanted to carry on and help her get ready – I kept thinking about how late I was and whether I might get into trouble. But Jean clearly meant for me to be impressed with this so I went in and said what a lot of books she had. She said ‘take any you want’. I said thank you very much but I have a huge pile at home waiting for me to read.

She then went through telling me stories about different books and who bought them, which ones belonged to Peter, which needed to be cleared out, which section was cookery, gardening etc. As she was going along one row of books she stopped at one and read from the spine ‘101 ways to improve your memory’. She looked at me and I could sense a joke coming on. She said ‘Now, we could all do with that, couldn’t we?!’ I was pleased that she had said ‘we’ and ‘all’ rather than making the joke about herself and her own memory.

Although I wanted to go along with the conversation and show an interest in what Jean was saying, I was also wondering how I could steer the conversation back to what we were doing. I get the impression that she forgets what the purpose of her walking is and so talks about whatever she is seeing on the way. I wanted to move towards the bedroom but Jean was standing in the doorway blocking my exit and so I had to jump on the next gap in the story and suggest going to the bedroom to choose clothes. (Extract from carer field notes – anonymised)

I’ve been working as a home carer for people with dementia for the past 6 months now. I am part of a research team working on the BOUGH study, which aims to Broaden Our Understanding of Good Home care. As part of this, two researchers (Dr Samantha Wilkinson and myself) are working with a homecare provider as caregivers. We work exactly as the other care workers do, except that, with permission from clients, family members, and other carers, we write up our experiences of each visit in the form of field notes.

Before I started, I had worked as a nurse and so I was not new to caring. I was already familiar with some of the aspects of care work that new carers may find daunting, such as providing personal care and administering medication. Still, I was apprehensive about working in the private sector, mainly because of its poor reputation. I was also worried about visiting people in their own homes who may not remember who I am from week to week. I was aware of the broadly held negative perceptions of care workers and care work and I know that at least some of this perception is not without foundation. I recently watched the Channel 4 Dispatches programme about home care which showed a pretty harrowing picture of visits cut short, medication errors, missed or late meals, and falsified records. The programme also highlighted the lack of training and support and the low pay offered to caregivers; once travel time was factored, the undercover reporter earned just £3.89 per hour. I am pleased I did not see this before starting this role; it must be off-putting to say the least for anyone considering working in this area. The programme also made me think of the perceptions some of my own clients and their families have of care work and of the care that I provide.

So what does good home care look like? What are the stresses and rewards of providing care in the homes of people with dementia? And what key factors influence the quality of care? These are some of the questions we are trying to answer in the BOUGH study. Although we are only part way through the study, we are starting to build a picture of what good quality home care might involve.

Fortunately, my own experiences of working for a home care organisation, and delivering home care to people with dementia, have not reflected the experiences of the Dispatches reporter. I have found the other caregivers to be very caring and highly skilled. I have found the skills and knowledge required of caregivers to be far more varied than I imagined. In just the last 6months I have; contacted emergency services when a client had fallen and been on the floor all night, found a home in pitch darkness and had to fumble around finding the fuse box, pulled up weeds from the garden, and fixed broken mops and hoovers. I also regularly prepare meals, listen to and share my own stories, help clients to wash and dress, and manage relationships with clients, relatives and managers.

In addition to our insights of working as home carers, we have also trained some caregivers to keep diaries about their working lives and we will be conducting interviews with carers, commissioners, clients and relatives. If you would like to receive updates about the BOUGH study as it progresses, please sign up to our bi-monthly newsletter by emailing me: lucy.perry-young@nottingham.ac.uk

Information about the BOUGH study:

http://www.nottingham.ac.uk/research/groups/dementia/projects/bough/index.aspx

Channel 4 Dispatches programme on home care:

http://www.channel4.com/programmes/dispatches/on-demand/61826-005

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