LIVE-DEM
Research type
Research Study
Full title
Understanding how and why line-in care packages are arranged and sustained when dementia is the primary support need: A mixed method study
IRAS ID
357408
Contact name
Ruth Bartlett
Contact email
Sponsor organisation
University of Southampton
Clinicaltrials.gov Identifier
10840 , registered on researchregistry 16 Nov 2024
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
A person with dementia often has difficulty with thinking and remembering and this will affect their ability to do everyday tasks such as getting dressed, eating, and going out. Eventually, a person with dementia will 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 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. 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. 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 integrated care boards and local authorities in England about the live-in care packages they arrange and/or fund for people with dementia. We will also survey managers of the organisations that provide live-in care 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. 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).
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
25/WM/0162
Date of REC Opinion
24 Sep 2025
REC opinion
Further Information Favourable Opinion