Lead: Professor Ruth Bartlett, Health Sciences, University of Southampton.

Team:

Dr Laura Cole, University of West London.

Mr Terry Clark, Southampton City Council.

Professor Joanna Thompson-Coon and Mrs Morwenna Rogers from NIHR Applied Research Collaboration South West Peninsula (PenARC).

Dr Catherine Henderson, on School of Economics & Political Science.

Dr Karen Harrison Dening, Dementia UK.

Dr Stefan Brown, Royal Holloway, University of London.

Mr George Rook, Public and Patient Contributor, Alzheimer's Society.

Ms Aimee Day, Public and Patient Contributor.

Ms Linda Hammond, Professor Anne Sophie Darlington and Ms Kathleen Curry, Health Sciences, University of Southampton Start: 01/01/2025 End: 30/06/2027

Summary

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).

Dementia is a disability affecting hundreds of thousands of people in England. A person with dementia has difficulty with thinking and remembering and this will affect their ability to do everyday tasks such as getting dressed, eating, and going out. A person with dementia will eventually need round-the-clock care. Many people move to a care home when they require help all the time.

However, other options are available. One alternative for people with enough living space is to organise a live-in carer; this is when a paid carer moves into (rather than visits) a person’s home to provide support. Searching the internet will bring up lots of home-care providers in England that offer this service. However, it is a relatively ‘hidden market’–there is no information or guidance about this form of homecare on government websites, and all the research about live-in care has been done overseas. Research is needed so people in England know more about this option and can make informed choices about their long-term care.

DESIGN & METHODS First we will review previous research to check what is already known and identify the main gaps and issues. Then we will survey all the 42 integrated care boards in England about the live-in care packages they arrange and/or fund for people with dementia. We will also survey all the homecare agencies that provide live-in care listed on the CQC /care regulator website (142) to find out about funding arrangements and other issues like staff training. To learn about the arrangement in detail, we will recruit ten households where a live in carer is employed. In each we will ask the person with dementia and live-in carer to keep a photo diary of their everyday activities for two blocks of seven days. Asking people to keep a photo diary at two separate intervals will provide information about any changes in the arrangement, and we will be able to actually see how it works. We will interview the person with dementia and live-in carer together, before and after each block of diary-keeping. We will conduct separate interviews with a family member and the person’s dementia care coordinator (e.g., a

social worker or nurse). These interviews will take place in person, online or by phone. We will create a timeline to show when, how, and why the package was arranged based on these interviews.

PATIENT & PUBLIC INVOLVEMENT

The research team includes a person with lived experience of dementia (Rook) who will lead the PPI work with support from an independent dementia advocate (Day). It also includes the research lead for a national charity (Harrison Dening/Dementia UK) and a purchaser of care services (Clarke).

DISSEMINATION

Our findings will be published in an information resource and accompanying video that we will co-create with individuals and families with dementia and make available on the Dementia UK website. We will launch the resource at a Community Conference about live-in care that we will