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“You just can’t do that in dementia care”: Barriers to partnership working within dementia services for people from south Asian communities

  • R Cheston
  • , E Dodd
  • , P Smith
  • , NS Woodstoke
  • , K Jutlla
  • , G Fry
  • , D Truswell
  • , J Butt
  • , S Parveen
  • University of the West of England
  • University of Wolverhampton
  • University of Bradford
  • The Dementia Alliance for Culture and Ethnicity
  • The Race Equality Foundation

Research output: Contribution to journal › Article › peer-review

4   Link opens in a new tab Citations (SciVal)

Abstract

Background: People from South Asian communities are under-represented at all levels of dementia services. Consequently, there is pressure for the statutory sector to deliver services in partnership with Voluntary, Community, Faith and Social Enterprises (VCFSEs). This study set out to explore the constraints to effective partnership working which prevent dementia care from being delivered in an equitable way.

Methods: Data collection consisted of two phases. First, we interviewed seven people with experience of partnership working and developed three fictional vignettes that were representative of the challenges they faced. We then used these vignettes to stimulate discussion in focus groups and interviews with 13 VCFSE and 16 statutory sector participants. Data was analysed using deductive thematic analysis.

Findings: Three themes were developed during the analysis. First, White British-centric services focused on the challenges for statutory services in meeting the needs of South Asians, developing flexible, responsive services and making inclusive partnership working truly meaningful. Second, VCFSE participants (but not statutory service participants) associated a failure to deliver effective partnership working with unconscious bias operating within systems, leading to the devaluing of their expertise and to their views being ignored. Finally, participants emphasised the need to prioritise relationships if they were to meet the challenges of developing partnership working.

Conclusion: We identified three constraints acting to prevent effective partnership working. First, the different meanings that statutory and VCFSE participants attach to challenges threatens their ability to develop a shared understanding of the needs of communities. Second, a reluctance to explicitly address service deficiencies can mean that stereotypes remain unaddressed. Finally, while both parties lacked power to change the fundamentals of service delivery, power and resources were also unbalanced with VCSFE services being more reliant on the statutory sector.
Original languageEnglish
Pages (from-to)611-630
Number of pages20
JournalDementia
Volume24
Issue number4
Early online date14 Sept 2024
DOIs
Publication statusPublished - 1 May 2025

Acknowledgements

We would like to thank all those people who contributed to this study. In particular we would like to acknowledge the contribution of our public contributors and experts by experience including Manjit Nijjar and Jag Kaur.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute for Health Research under its Research for Patient Benefit Programme (grant reference number NIHR200736). The views expressed here are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

Keywords

  • minority health
  • Alzheimer’s disease
  • voluntary health agencies
  • caregivers
  • accessibility of health services
  • community health care

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