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

Leverton, Monica, Burton, Alexandra, Beresford-Dent, Jules, Rapaport, Penny, Manthorpe, Jill, Azocar, Ignazia, Giebel, Clarissa ORCID: 0000-0002-0746-0566, Lord, Kathryn and Cooper, Claudia (2021) Supporting independence at home for people living with dementia: A qualitative ethnographic study of homecare Social Psychiatry and Psychiatric Epidemiology: the international journal for research in social and genetic epidemiology and mental health services, 56 (12). pp. 2323-2336. ISSN 0933-7954, 1433-9285

Text Revised_SPPE full manuscript_02.03.2021.docx - Author Accepted Manuscript Download (115kB)

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.

Item Type:	Article
Uncontrolled Keywords:	Dementia, Homecare, Domiciliary care, Independence, Qualitative research, Ethnography
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health
Depositing User:	Symplectic Admin
Date Deposited:	07 Apr 2021 09:25
Last Modified:	01 Mar 2026 11:58
DOI:	10.1007/s00127-021-02084-y
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3118562
Disclaimer:	The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate.