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

Abstract

PurposeThe aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia.MethodsWe 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.ResultsWe 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.ConclusionWe 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.