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

Published online by Cambridge University Press:  06 March 2020

Kristian Pollock Open the ORCID record for Kristian Pollock [Opens in a new window] ,
Samantha Wilkinson ,
Lucy Perry-Young ,
Nicola Turner Open the ORCID record for Nicola Turner [Opens in a new window]  and
Justine Schneider
Kristian Pollock*
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK
Samantha Wilkinson
Affiliation:
School of Childhood, Youth and Education Studies, Manchester Metropolitan University, Manchester, UK
Lucy Perry-Young
Affiliation:
Department of Allied Health Professions, Sheffield Hallam University, Sheffield, UK
Nicola Turner
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK
Justine Schneider
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK School of Sociology and Social Policy, University of Nottingham, Nottingham, UK
*
*Corresponding author. Email: [email protected]
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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 care-givers (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 HCWs.

Keywords

home caredementiaqualitativefamily care-givers
Type
Article
Information
Ageing & Society , Volume 41 , Issue 9 , September 2021 , pp. 2060 - 2073
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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