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

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.

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS‐professional dementia training intervention for homecare workers during the Covid‐19 pandemic

“…A particular challenge is to develop implementable and sustainable training models, in a setting where staff turnover is high, funding‐limited, time‐pressured (Leverton, 2020 ; Leverton et al., 2021 ) and workloads heavy (Su et al., 2021 ). Participants reflected on how these barriers could be overcome with greater organisational support, for example, through the allocation of protected time for training by employers.…”

“…The intervention focuses on peer learning and sharing of experiences, acknowledging and drawing on the homecare workers’ different experiences, and levels of training. We co‐designed the NIDUS‐professional training and support intervention in workshops, with people living with dementia, family carers, homecare workers and managers and health practitioners, using existing interventions (Kales et al., 2015 ; Livingston et al., 2019 ; Low et al., 2015 ; Polacsek et al., 2020 ), our ethnographic studies (Leverton, 2020 ; Leverton et al, 2021 ) and lived experience of co‐designers.…”

‘You can’t just put somebody in a situation with no armour’. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia

“…Working in clients’ homes, as opposed to hospital or residential settings, may neutralise power dynamics and allow for greater autonomy and opportunities for informal care and relationship development ( Bolton & Wibberley, 2014 ); there may be scope within training to consider and reflect on the impact of providing care in clients’ homes. The home as a site of care is complex and warrants further attention ( Leverton et al, 2021 ).…”

How does the delivery of paid home care compare to the care plan for clients living with dementia?

“…The study was approved by London (Camden and King's Cross) National Research Ethics Service (NRES) (reference: 17/LO/1713). Full details of procedures are reported elsewhere (Leverton et al, 2021a, 2021b). We undertook a secondary qualitative analysis of the ethnographic data derived from this earlier study, alongside an analysis of care plans for the clients observed, collected during the original study but not previously analysed.…”

“…Home‐care support for dementia that incorporates person‐centred approaches is considered the ‘Gold standard’ (Love & Femia, 2015) with the focus on the individuality of the person and their interactions and relationships with others (Hoel et al., 2021; Kitwood, 1997). Home‐care workers are well placed to promote person‐centred care, although they often feel unsupported to carry out their roles effectively (Cooper et al., 2017; Leverton et al, 2021a, 2021b).…”