People Living with Dementia & Informal Caregivers: Needs & Preferences
Research type
Research Study
Full title
Exploring the Changing Landscape of Care-Based Needs and Preferences of People Living with Dementia in Residential Care Settings, and their Informal Caregivers.
IRAS ID
341897
Contact name
Chloe Moody
Contact email
Sponsor organisation
University of Bath
Duration of Study in the UK
0 years, 10 months, 30 days
Research summary
This qualitative study aims to explore the changing landscape of care-based needs and preferences of 12 People Living with Dementia (PLwD) and their respective informal caregivers, across 3 care homes in Wiltshire and BaNES. This project will identify their views towards dementia care and Advance Care Planning, where an individual makes decisions surrounding their future care, finances, and other personal matters prior to losing mental capacity.
With global dementia cases surpassing 55 million, labelled a “public health priority” by World Health Organisation, and 70% of UK care home residents affected, understanding their care-based needs is imperative.
Informal caregivers are vital, saving the UK economy £14.6 billion annually, but often face mental health challenges due to caregiving demands and inadequate support. Understanding their needs, alongside the person living with dementia, is crucial to better supporting them. Additionally, no studies have assessed if informal caregivers accurately grasp the needs and preferences of people living with dementia
One-to-one interviews with PLwD in care homes, their respective informal caregivers, and small focus-groups of informal caregivers will be conducted over a nine-month period to address the following research questions:1. What are the care-based needs and preferences of people living with dementia in residential care settings, and their informal caregivers?
2. How do the care-based needs and preferences of people living with dementia, and their informal caregivers, change over time?
3. To what extent do informal caregivers recognise and understand the care-based needs and preferences of people living with dementia, and what are their (informal caregivers’) priorities and challenges when communicating and meeting these needs?
4. What are the attitudes, needs, and preferences towards Advance Care Planning from the perspectives of people living with dementia in residential care settings and their informal caregivers?REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
24/LO/0823
Date of REC Opinion
26 Nov 2024
REC opinion
Favourable Opinion