Maids of all work? Investigating home care workers’ care for older people with dementia at end of life

Home care workers provide practical care and support to many older people with dementia at home. They are the largest dementia care workforce. The personal and practical care they provide to older people may continue until they die (even if other professionals are involved). However, the role, experiences, beliefs and attitudes of home care workers providing care up to the end of life for people with dementia are often overlooked. There are limited numbers of studies that have addressed specifically how home care workers define and manage possible conflict, stress and competing demands; and these are hard to distinguish from research on other practitioners or covering settings outside the home. This 18 month qualitative, exploratory study began with a review of existing research evidence. Using systematic methods, we identified research covering home care, dementia and end of life. We searched key databases and data sources using relevant search terms, and reviewed the evidence by identifying themes in the papers and documents located, including NICE guidelines on home care and on end of life. This paper reports the findings of the review and the ways the evidence was used to inform fieldwork, including drawing on advice from the research advisory group in which older people and carers actively participated