DEMSA V1.0
Research type
Research Study
Full title
Exploring person-centred care, care environments and care planning for people with dementia from South Asian backgrounds
IRAS ID
320061
Contact name
Pushpsen Joshi
Contact email
Duration of Study in the UK
3 years, 10 months, 30 days
Research summary
Background: The NHS emphasises the importance of person-centred care for people with dementia, yet there is a lack of culturally-appropriate dementia care for ethnic minorities and little research into how person-centred care is experienced by these communities. Most dementia care in South Asian communities in the UK is provided at home by family carers. Despite this, there is low uptake of care planning amongst ethnic minorities. This highlights the importance of understanding the care environment and the impact of cultural factors, and how these interact to produce distinct experiences of person-centred care.
Aims: 1) Explore what ‘person-centred care’ means for South Asian people with dementia; 2) Explore how care planning discussions take place in the community, and how these might be optimised; 3.) Explore how care environments can be culturally adapted to ensure optimal person-centred care.
Design: Qualitative multi-site ethnographic study split into 3 work-streams.
Duration of study: 4 years
Methods: Participants & Sampling: 1) Review of the literature exploring care planning in dementia amongst South Asian communities. 2) Phase 1 Ethnography, incorporating: 1. Observation of 6-8 South Asian people living with dementia and their care networks (mixture of home and care home settings), with serial visits over a 12-18-month period. 2. Interviews with 15-20 South Asian people with dementia and 15-20 carers. 3. Review of recorded care planning discussions (in medical/care notes). 3) Phase 2 Design of an information resource for health +/-social care professionals to help facilitate care planning discussions in the community.
Recruitment: NHS, care homes, community and third sector organisations, social media, online dementia and carer networks. From in/around London and Reading.
Analysis: Reflexive thematic analysis will be used to analyse the data.
Impact: Findings will help inform better models of person-centred care for people with dementia from South Asian backgrounds and identify future priorities for research.
Funder: Wellcome Trust.
REC name
London - Queen Square Research Ethics Committee
REC reference
23/LO/0684
Date of REC Opinion
8 Dec 2023
REC opinion
Further Information Favourable Opinion