What constitutes \u2018good\u2019 home care for people with dementia? An investigation of the views of home care service recipients and providers

Anita M Y Goh ,Lee Fay Low,Jason Burton,Samuel Scherer ,Steven Savvas,Brendan Hallam,Gill Livingston,Nadia Chau,Luke Gahan,Samantha M Loi ,Frances Batchelor,David Ames,Anita Panayiotou,Meg Polacsek,Maho Omori,Margaret Winbolt,Claudia Cooper,Steven Roberts ,Colleen Doyle,Sue Malta,Briony Dow

doi:10.1186/s12877-021-02727-4

Abstract

BackgroundOur objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia.MethodsWe conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach.ResultsConsensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers.ConclusionsIt is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services.Trial registrationACTRN 12619000251123.

Highlights

Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia
In order to fill this gap in basic understanding of what constitutes ‘good home care’, this study aimed to describe the views of key stakeholders on what they considered important for high-quality in-home dementia care
Thematic analysis discovered a high rate of consensus between stakeholder groups, with five clear themes across groups that they thought was important for good care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture

Summary

Introduction

Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Family carers provide much of the care, paid in-home care is often needed as an adjunct to maintain independence, health, and safety of the person with dementia, as symptoms progress [5,6,7]. Home care workers play a role in their clients’ psychological, intellectual, emotional and social needs [8, 9], and enable people with dementia to remain socially connected within their community [10]. They support family carers, reducing their stress and providing them respite time [10]. Randomized controlled trials have shown home care contributes significantly to reduced hospital admission, delayed institutionalization, and improved quality of life [11,12,13]

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