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Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare.

Leverton, M; Burton, A; Beresford-Dent, J; Rapaport, P; Manthorpe, J; Azocar, I; Giebel, C; ... Cooper, C; + view all (2021) Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare. Social Psychiatry and Psychiatric Epidemiology , 56 pp. 2323-2336. 10.1007/s00127-021-02084-y. Green open access

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Abstract

PURPOSE: The aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia. METHODS: We undertook 100 h of participant observations with homecare workers (n = 16) supporting people living with dementia (n = 17); and 82 qualitative interviews with people living with dementia (n = 11), family carers (n = 22), homecare managers and support staff (n = 11), homecare workers (n = 19) and health and social care professionals (n = 19). We triangulated data and analysed findings thematically. RESULTS: We developed three themes: (1) independence and the home environment, highlighting ongoing negotiations between familiarity, suitability and safety for care; (2) independence and identity, exploring how homecare workers' understanding of their clients' identity can enable active participation in tasks and meaningful choices; and (3) independence and empowerment, considering the important position of homecare workers to advocate for clients living with dementia while navigating authoritative power amongst proxy decision-makers. CONCLUSION: We consider that person-centred care should also be home-centred, respecting the client's home as an extension of self. Homecare workers can use their understanding of clients' identities, alongside skills in providing choice and developing relationships of interdependence to engage clients in everyday tasks. Homecare workers are well placed to advocate for their client's voice within the care network, although their ability to do so is limited by their position within power structures.

Type: Article
Title: Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare.
Location: Germany
Open access status: An open access version is available from UCL Discovery
DOI: 10.1007/s00127-021-02084-y
Publisher version: https://doi.org/10.1007/s00127-021-02084-y
Language: English
Additional information: Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/
Keywords: Dementia, Domiciliary care, Ethnography, Homecare, Independence, Qualitative research
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Behavioural Science and Health
URI: https://discovery.ucl.ac.uk/id/eprint/10127532
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