Delivering Personalised Home Care for People with Dementia: An Investigation of Care Providers’ Roles and Responsibilities

Abstract

Context: Home care agencies are a critical part of the social care system in England; however, little is known of how they perceive their role in delivering personalised care or their approach to supporting people with dementia. Objectives: To investigate the perception of home care managers of their capacity and capability to provide care for people living with dementia with a focus on specialist care, and the challenges of delivering personalised support. Methods: A qualitative study employing semi-structured interviews (May-October 2018) of ten independent home care managers in England. Findings: Three themes were identified. First, managers aimed to provide responsive care, assessing individual needs and family circumstances, including addressing social and emotional needs in keeping with a model of personalised care. Second, in responding to commissioning processes, managers found prescriptive specifications constrained delivery of responsive home care. Sharing assessment and care planning with commissioning teams helped managers personalise client care but created tensions. Third, workforce preparedness was a priority, with life skills and experience valued above qualifications. Agencies used different service models, with only a few referring to specialist dementia roles or services. However, all were aiming to increase understanding of dementia across their teams as part of their approach to personalisation. Limitations: It was not possible to interview home care workers who may have given alternative viewpoints. Implications: Home care agencies could be supported to deliver personalised home care for people with dementia by taking greater responsibility for assessment and care planning, thus encouraging outcomes that include wellbeing and social goals. Developing a valued and skilled workforce will be essential to achieve this.

Towards defining quality in home care for persons living with dementia

“…PSWs have also identified adaptability and flexibility as core components of high-quality home care for persons with dementia [ 16 ]. The tension between what is considered essential and valued in quality home care, like personalized and flexible care, is at odds with constraints imposed by the existing home care system [ 49 , 50 ]. For example, home care case managers tend to pay more attention to the lack of available resources or system pressures when making care decisions while family caregivers consider the relational effects that decisions would have on the family unit [ 50 ].…”

The Fate of Social Modernity

“…Kröger and Bagnato (2017: 205) note that, internationally, there has never been a clear separation between healthcare and other types of assistance related to the state of human frailty (the two authors refer to such assistance as 'social care'). As for the notion of personal care, the term occasionally designates activities of privately employed home helps supporting elderly people with functional limitations (Melchiorre et al 2022a); elsewhere it refers to specialised care workers assisting home-dwelling users suffering from dementia (Sutcliffe et al 2021). The notion of 'home help' is also used in this context, often with a focus on practical chores in a person's household (cleaning, cooking etc.…”

“…Since frailty implies 'a loss of functional abilities and control over one's life' (Hoedemakers et al 2019: 3), personal care is often faced with evolving and unpredictable states of health (for instance eye disease, impaired hearing, diabetes or physical restrictions). Ageing frequently implies a decline in communication skills and behavioural problems, which is epitomised by people with dementia (Sutcliffe et al 2021), affected by increasing forgetfulness and self-neglect. Given the variable nature of the condition, dementia care comes with special risks, for instance when such people are cooking, managing money, walking outside the home or managing their medication (Sandberg et al 2021(Sandberg et al : 1701.…”

“…As home care is composed of both relational and practical work, there is a 'blurry line' that 'emerges between the homecare service worker's professional role and her or his personal emotional investments', and an 'ability to handle those more or less invisible one-off cases that often arise in work with humans' is sought-for in a permanent 'interplay between physical demands, emotional demands, and organisational preconditions' (Vänje and Sjöberg Forssberg 2021: 46;. Domiciliary care arrangements also involve organisations which orchestrate the provision of services and social support (see Dussuet and Ledoux 2019;Hoedemakers et al 2019;Andersson and Johansson 2021;Sutcliffe et al 2021;Rostad et al 2023). Home care systems in Western Europe exhibit different configurations concerning related responsibilities.…”

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

“…Paid home‐care workers can support this (Dempsey et al., 2016). Home care is mostly provided by independent businesses in the UK (Sutcliffe et al., 2021), with workers known by a variety of terms (Cooper et al., 2017); for this study, we will use the term ‘home‐care workers’. The home‐care worker role is commonly perceived as undesirable (Schneider et al., 2019), and resourcing these workers is challenging (Hughes & Burch, 2020), with high staff turnover (Skills for Care, 2020).…”