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What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Background: In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. Objectives: This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Methods: Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. Results: In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the 'client'. Rather than focusing on the HCWs' work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered 'character' and 'innate' caring abilities to be more important than those derived from training. Conclusions: The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

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Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Cambridge University Press
ISBN/ISSN
0144-686X
Publication Year
2021
Issue Number
9
Journal Titles
Ageing & Society
Volume Number
41
Start Page
2060
End Page
2073