Dates: 1 Janaury 2025 - 30 june 2027 Funder: NIHR Health Services and Delivery Research Programme
Project description
LIVE-DEM is a study about live-in care for people whose primary support need is dementia. Live-in care is when a paid care worker lives in a client’s home to provide support. The project will examine the live-in care market in England and explore how live-in care packages are funded and organised for people with dementia. LIVE-DEM explores live-in care from multiple perspectives to provide evidence that will help (a) families navigate the long-term care system, and (b) policymakers develop and improve this form of homecare. By focusing on live-in care, a relatively ‘hidden’ service, the research has the potential to improve the decisions that people make about long-term care. It will achieve this by co-producing accessible information with and for families living with dementia and providing much needed evidence for strategists working on long-term care reforms.
Methods
LIVE-DEM will examine features of live-in care in England using several methods. Firstly, University of Exeter researchers will conduct a literature review of evidence on live-in care. Researchers at the LSE will design and conduct two surveys. One survey of Integrated Care Boards (ICBs) and local authorities (LAs) commissioners will explore the commissioning of live-in care including the characteristics of people receiving live-in care packages, assessments and reviews, and funding and contracting mechanisms. A second survey of homecare providers and organisations that provide live-in care to find out about funding arrangements, staff training, the types of clients receiving live-in care, the workforce providing live-in care, fees and funding. Researchers from University of West London and University of Southampton will recruit ten households where a live-in carer is employed, to explore care arrangements. This research will involve interviews with people with dementia, family carers, live-in carers and coordinators of care. People with dementia and live-in carers can keep a photo diary of their everyday activities. This work will illustrate when, how, and why the live-in care packages were arranged. A fourth workstream involves three knowledge mobilisation workshops, engaging with health and social care commissioners and practitioners, central and local government and voluntary sector stakeholders, and people living with dementia and family carers. The study team includes collaborators with roles in local authority commissioning and dementia charity representation. A Patient and Public Involvement and Engagement group and an international steering committee will advise the research team throughout the project.
Aims
LIVE-DEM aims to describe the nature of the live-in care market in England and to understand how and why live-in care packages for people whose primary support need is dementia are arranged and sustained.
Further Project information
Principal Investigator: Professor Ruth Bartlett
CPEC Research team: Dr Catherine Henderson and Ms Elisa Aguzzoli
Collaborators: Dr Stefan Brown, Royal Holloway, University of London Dr Laura Cole, University of West London Mr Terry Clarke, Director of Integrated Care & Commissioning, London Borough of Merton Ms Aimee Day, Freelance Dementia Advocate Dr Karen Harrison Dening, Dementia UK Mrs Morwenna Rogers, University of Exeter Medical School. Mr George Rook, living with dementia and activist campaigner Professor Joanna Thompson-Coon, University of Exeter Medical School Ms Anita Chonzi, University of Southampton
Region: England
Keywords: Live-in care, homecare, dementia, providers, commissioners, local authorities
Contact: Live-inDEMProject@groups.soton.ac.uk