Home care workers supporting people with dementia at end of life

John WoolhamJohn Woolham is Senior Research Fellow at the Social Care Workforce Research Unit. (560 words)

The latest seminar in the current Perspectives series focused on research with older people took place on Monday 9 July. Kritika Samsi from SCWRU and Tushna Vandrevala from Kingston University presented findings from their research into how home care workers support people with dementia towards the end of their life. Their study investigated the experiences of home care workers working with people with dementia who were living in their own homes, the challenges they face, how these are managed and their views of the contribution of their work. Their presentation was based on semi-structured interviews with 30 care workers and 13 managers from 10 home care agencies in London and the south east of England. It was funded by Dunhill Medical Trust.

Home care workers’ accounts of their work suggested that providing person-centred care did not always sit easily within the formal procedures set by regulatory agencies and home care agencies. Like all home care workers, they had to adapt to different home environments, adjusting the way they carried out their role according to the characteristics of the person with dementia and wider family. Sometimes, requests for workers to carry out some tasks had to be turned down because of regulations, related to health and safety or to the management of people’s bodies after death. Though workers would have gladly carried out some tasks, they knew that they were not permitted to do so. While this might initially give rise to frustration amongst family members and workers themselves, the workers were protected from getting involved in situations where they might be at risk.

The ability of the home care worker to ‘negotiate’ – with the person with dementia, their family members, and within the wider regulatory environment – was a skill that was not always easy to articulate. Advice and support from colleagues and managers to help with negotiation was not always available. There also seemed to be a limited understanding of the home care worker’s role amongst other community professionals such as nurses. The study findings suggested that improvements could be made to encourage mutual support and the more effective sharing of information.

Home care workers also spoke of feelings of isolation due to the nature of their working environment, difficulties in being able to work with some people with dementia towards the end of their life and situations of conflict that sometimes occurred with family members. The presenters shared moving testimonies from care workers who had to deal with their own raw emotions following the death of someone they had provided care for, and the distress of family members. It seemed that support from management through effective supervision, ad hoc peer support, previous experience and prior knowledge all helped workers deal with their own feelings of loss.

The presenters ended with a plea for a greater acknowledgement of the emotional labour of the home care role and the need to address its characteristics of being: poorly paid, isolated, often working skilfully in complex situations, and sometimes without access to regular supervision and support.

John Woolham is Senior Research Fellow at the Social Care Workforce Research Unit. John convenes the seminar series, Workforce perspectives on the care and support of older people in England.


Abrams, R., Vandrevala, T., Samsi, K., & Manthorpe, J. (2018). The need for flexibility when negotiating professional boundaries in the context of home care, dementia and end of life. Ageing and Society, 1-20. doi:10.1017/S0144686X18000375