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What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study

Pollock, Kristian; Wilkinson, Samantha; Perry-Young, Lucy; Turner, Nocola; Schneider, Justine

Authors

Samantha Wilkinson

Lucy Perry-Young

Nocola Turner

JUSTINE SCHNEIDER justine.schneider@nottingham.ac.uk
Professor of Mental Health & Social Care



Contributors

Samantha Wilkinson
Researcher

Lucy Perry-Young
Researcher

Abstract

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family caregivers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. 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. 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 home care workers.

Citation

Pollock, K., Wilkinson, S., Perry-Young, L., Turner, N., & Schneider, J. (2020). What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study. Ageing and Society, https://doi.org/10.1017/S0144686X20000185

Journal Article Type Article
Acceptance Date Jan 16, 2020
Online Publication Date Mar 6, 2020
Publication Date Mar 6, 2020
Deposit Date Apr 2, 2020
Publicly Available Date Sep 7, 2020
Journal Ageing and Society
Print ISSN 0144-686X
Publisher Cambridge University Press (CUP)
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1017/S0144686X20000185
Keywords Home care, dementia, qualitative, family caregivers
Public URL https://nottingham-repository.worktribe.com/output/3974330
Publisher URL https://www.cambridge.org/core/journals/ageing-and-society/article/what-do-family-caregivers-want-from-domiciliary-care-for-relatives-living-with-dementia-a-qualitative-study/2546D41C2E161ADDCEB82F75C51B4020