Project overview
BACKGROUND: It is estimated that the number of people aged 85+ years in need of 24-hour care (with people with dementia being the largest diagnostic group) will double in the next decade. At the same time, the number of people with dementia under the age of 65 years is growing, many of whom will require 24-hour care. A move to a care home is often presented as the only 'safe' response for people with dementia who need round-the-clock support. Yet people with dementia are not obliged to live in a particular living arrangement and entitled to choices equal to others. An alternative, unexamined model of service delivery is live-in care; this is when a care worker moves into (rather than visits) a client's home to provide support. Live-in care is a relatively 'hidden market' in England and most research has been conducted overseas. We need more research and resources to guide decision-makers in the England about live-in care. CONCEPTUAL BACKGROUND: The concept of Ageing in Place (AiP) underpins the project. AiP is the ability to live in one's own home and community, safely, independently, and comfortably, regardless of age, income, or ability level. In the context of dementia, there are practical problems to facilitating AiP such as decreasing self-reliance and high load of carer responsibility. The project will evaluate and refine the concept of AiP for a dementia context. AIMS AND OBJECTIVES: Our research aims to understand how and why live-in care packages are arranged and sustained in England, when dementia is the primary support need, and to describe the nature of this market (e.g., size and cost). Objectives are to a) synthesise and examine current evidence on live-in care b) scope health and social care commissioning of live-in care c) examine the process of arranging a live-in care package when dementia is the primary support need d) analyse experiences of receiving live-in care using the concept of AiP e) share learning through an ongoing process of knowledge mobilisation with key stakeholders. DESIGN AND METHODS: The study is a concurrent transformative mixed-methods design across four work packages (WP). WP1 is a synthesis of research and policy evidence on live-in care, focusing on people with dementia. WP 2 is a two-pronged survey of integrated care boards and private providers to scope this market. WP3 is an evaluative case study of live-in care packages to examine the arrangement. We will recruit ten households from across the south of England with a live-in carer where dementia is the primary support need. Within each case, we will invite the person with dementia and live-in care worker to maintain a photo-diary and interview the person's family carer and care co-ordinator (separately). Annotated timelines will be constructed from these data to show when, how, and why the package was arranged. WP 4 focuses on knowledge mobilisation and impact and involves a series of workshops. TIMELINES: This is a 30-month project. ANTICIPATED IMPACT AND DISSEMINATION We expect the project to improve awareness and the procurement of live-in care among local authorities and families. To achieve this we will: (a) publish a monthly e-newsletter to update relevant parties about the project, including people working in strategic positions in the adult social care sector (b) co-design a resource about live-in care with and for care professionals and families and launch this at a Community Conference (c) organise a policy round table with relevant parties to identify recommendations for a policy brief, (d) publish findings in a policy brief and open access journals, and (e) present the work at network meetings, seminars, and major conferences.