INDEP v1.0
Research type
Research Study
Full title
Independent Dementia Care Planning: Supporting personalised care for people with dementia without informal carers
IRAS ID
361723
Contact name
Sarah Griffiths
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2025/08/91, UCL Data Protection; 182438, EDGE
Duration of Study in the UK
1 years, 9 months, 19 days
Research summary
Background:
A rapidly growing number of people with dementia live alone, with no informal carer to provide support with health and wellbeing. They are at greater risk of physical and mental health difficulties than those with informal carers. They see doctors less, have more unplanned hospital admissions and move into care homes earlier.
Everyone with dementia should have a ‘personalised care plan’, created by primary care staff and updated each year. Often, informal carers support the person with dementia to create this plan. Where there is no carer, this can create additional challenges. There is a lack of research evidence regarding the needs of people with dementia who live alone with no informal carer, including how practitioners can best support them and have helpful care planning conversations.
Aim:
To address the challenges of personalised care planning with and for people living alone with dementia, without informal carers, by:
1. Developing an in-depth understanding of:
a. Their care and support needs and strengths
b. How primary care can best engage with this group to co-create personalised care plans
c. Barriers and facilitators to primary, social and secondary care, and the third sector, collaborating to share and enact care plans.
2. Co-developing and feasibility testing adaptable primary care staff training resources.Methods:
The study will consist of three overlapping workstreams (WS):
• WS1: Interviews with people living alone with dementia without informal carers and primary and social care practitioners.
• WS2: Observations of care planning conversations between people living alone with dementia without informal carers and practitioners. Brief interviews conducted immediately following observations.
• WS3: Co-production workshops and iterative development of a staff training resource.Outcomes:
This project will result in a training resource designed to support primary care teams deliver personalised care planning for people living alone with dementia without informal carers.
REC name
West of Scotland REC 5
REC reference
25/WS/0195
Date of REC Opinion
10 Dec 2025
REC opinion
Favourable Opinion