Principal Investigator: Professor Jill Manthorpe

Lead institution: King’s College London

Award amount: £66,994

The experiences of the Home Care Workforce in providing care up to the end of life for older people

The experiences and views of home care workers supporting older people with dementia to live in their own homes up to the end of life have been relatively ignored in research.

This project aimed to address this gap. It investigated the experiences of the home care workforce, both frontline workers and managers, in the context of providing care to older people with dementia up to the end of life. The aims were:

  • To explore the experiences of home care workers providing care up to the end of life to people with dementia living in their own homes through a systematically conducted literature review
  • To elicit the perceptions and in-depth experiences of home care workers, their everyday work challenges, the role they play in providing care up to the end of life and how these are managed
  • To develop an understanding of the impact of the work, and the ways in which home care workers cope and “switch off” from work, through face-to-face interviews.

This qualitative empirical study, undertaken in 2016 and 2017, interviewed 28 home care workers and 12 managers from a range of home care agencies in South-East England and London. The research team are very grateful to them for taking part in this study.

Following the interviews, the team then considered what had been said to draw out shared views and experiences. Blurred boundaries, the need for communication, the constant flux of a home care worker’s role, and their perceptions of a client’s death were important elements of their work.

The home care workers, all of whom were working for private care providers, described often developing close relationships with clients, and the boundary between being a paid person and a ‘friend’ sometimes became blurred. At times, this resulted in strong attachments that made the process of grieving harder after the client had died. At times, it could be awkward in behaving like a professional or doing what the client or family wanted. For example, while some families preferred to be left alone when the older person had died, if the care worker was at work, current employment practice requires them to await the arrival of a GP or an ambulance, as demonstrated by the below quote:

“We’ve been trained, when you come in and a client’s been found dead, you are not supposed to touch them. I said ‘is there anybody you would like me to call, would you like me to call the ambulance?’ ‘No, I just want you to leave’. But at that time we’re not allowed to leave, we called the office and they said to stay there until the doctor comes to confirm that she’s actually gone. So we were there for 2½ hours and for him, for me, I felt uncomfortable being there because I just wanted to step aside, let him be with his wife so that he has that little quality time with her”

Many home care workers described the need to ‘blend’ into very different home environments, accommodating different client personalities and wide variations in the involvement of family members. Sometimes communications were difficult and what they were expected to do changed a lot. Furthermore, while getting on with the client’s family was part and parcel of their work – there could be some conflict or mixed messages.

The home care workers reported a range of sources of support, but this was mainly from their family and friends, and other colleagues. Only a small proportion of staff reported being offered individual telephone support or group supervision to discuss work experiences. Some of the participants discussed developing their own personal coping strategies when working with the many clients they saw every day, with one home care worker using the drive between clients’ homes as an opportunity for ‘taking a breather’. However, many commented that they worked in isolation and felt that there were few avenues for support from their employers.

It is evident from this study that home care workers provide care to people with dementia at the end of life largely in isolation, with many experiencing lack of clarity in their caring role and receiving limited support as their client nears the end of life. However, it was a job that demanded creativity and allowed some discretion. Participants reported that they needed to explore ways in which their clients’ wishes and needs could be fulfilled. When a client had severe dementia, learning what these were could be difficult, especially when the person had limited capacity to express their care needs and wishes:

“It’s harder to make a choice in some things when somebody can’t direct their own care or they don’t want it done and you know they need it done for hygiene reasons and things like that. It is trying to find something that will allow them to let you do it.”

The findings of this study make a potentially valuable contribution to our understanding of the roles of home care staff working with people with dementia up to the end of life and may be helpful in developing support resources for home care practice and human resources management.

Professor Jill Manthorpe said “We were privileged to talk to so many people about this largely ‘invisible’ world of work. Please contact us if you would like to hear more of the study’s outputs.”

Co-applicants on the grant were: Dr Tushna Vandrevala and Dr Kritika Samsi