Project

Experiences of Home-care Workers in Providing Personal Care in Advanced Dementia - AMM07

The project involved interviewing home-care staff to understand their experiences of providing personal care to people living with advanced dementia.

Summary

People with dementia develop considerable needs for assistance with personal care. Providing acceptable personal care in dementia can be challenging, particularly if the person resists or refuses assistance (Konno et al 2014). Alongside family carers and care home placements, home care services are the third, and main, element of personal care support available for people with dementia. The position of home-care workers in relation to personal care support in advanced dementia (working within the person’s own home) is unique and under-researched (D’Astous et al, 2019), thus their experiences are valuable in learning about this issue.

Project aims

The project was directly linked to Dr Backhouse’s post-doctoral junior fellowship programme funded by the Alzheimer’s Society. The fellowship examines this issue with family carers and care home staff with the aim of developing an intervention to support caregivers.  The outcome of this project will support this wider work.

Potential or actual impact

Home-care workers are increasingly caring for clients living with dementia. Workers usually have limited dementia training and are low paid and often lone working. Little is known about how home-care workers assist people with dementia with their personal care. We aimed to explore the experiences of home-care workers and the knowledge and skills they rely on when providing personal care to people with dementia. In 2020, we conducted 17 semi-structured, face-to-face interviews with home-care workers in the East of England. The analysis was inductive and thematic. Two key themes were present in the data: ‘structural conditions’ and ‘clients' dementia-related characteristics’. For each of these, we examined the challenges faced by home-care workers and the strategies they used to manage these challenges. Challenges included time allocation for visits, completing care plan tasks, lone working, communication and understanding, refusals of care, and client behaviours. To mitigate these challenges, home-care workers utilised system support, time management, training and experience and enacted a caring relationship thought about their approach and used distraction and communication skills. Workers relied on skills such as relationship building, team working, observation, communication, decision making and interpersonal sensitivity. They drew on knowledge about the person, the person's needs, their own abilities, company policies and procedures and their role and responsibilities as a home-care worker. Home-care workers had more scope to mitigate client-based challenges by adapting care within client interactions than to manage structural challenges where there was a limit to what workers could do. Despite a commissioning focus on time- and task-based care, when caring for people with dementia, home-care workers used interaction as a way to bring the person along and complete care activities. Home-care services should acknowledge the importance of interactions with people with dementia within home care and support their workers to develop interpersonal sensitivity.

Papers/resources associated with this study

Researchers and Institutions 

UEA

Contact

Dr Tamara Backhouse