TY - JOUR
T1 - Supporting independence at home for people living with dementia
T2 - a qualitative ethnographic study of homecare
AU - Leverton, Monica
AU - Burton, Alex
AU - Beresford-Dent, Jules
AU - Rapaport, Penny
AU - Manthorpe, Jill
AU - Azocar, Ignacia
AU - Giebel, Clarissa
AU - Lord, Kathryn
AU - Cooper, Claudia
N1 - Funding Information:
This work was funded by the Alzheimer’s Society (Alzheimer’s Society Centre of Excellence grant number 330). One of the authors–CG—is funded by the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC). The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.
Publisher Copyright:
© 2020, The Author(s).
PY - 2021/12
Y1 - 2021/12
N2 - 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.
AB - 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.
KW - Dementia
KW - Domiciliary care
KW - Ethnography
KW - Homecare
KW - Independence
KW - Qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85105261551&partnerID=8YFLogxK
U2 - 10.1007/s00127-021-02084-y
DO - 10.1007/s00127-021-02084-y
M3 - Article
C2 - 34480597
AN - SCOPUS:85105261551
SN - 0933-7954
VL - 56
SP - 2323
EP - 2336
JO - Social Psychiatry and Psychiatric Epidemiology
JF - Social Psychiatry and Psychiatric Epidemiology
IS - 12
ER -