Understanding the Experiences of Post-Diagnostic Dementia Support for South Asians Living In England: The Need for Co-Production

Abstract

Karan Jutlla, Kielan Arblaster

Background: The increase in the numbers of South Asians in the United Kingdom (UK) is likely to lead to an increased need for dementia services yet; they are currently under-represented in dementia services. Furthermore, little is known about the prevalence, experience and treatment of dementia in the UK South Asian population, including their experiences of post-diagnostic support. Consequently, a project was commissioned by Alzheimer’s Society in the UK to gather insight into the experiences of post-diagnostic dementia support for the South Asian community in England to identify whether their post-diagnostic support needs were being met and what they needed from post-diagnostic support services.

Methodology/Methods: As this project sought to understand experiences, a qualitative case-study approach was adopted. Twelve South Asian carers of a person with dementia and one South Asian person living with dementia took part in an on-line in-depth, topic-guided conversation. All conversations were audio recorded with consent and analysed using a thematic analysis.

Findings: Analysis revealed that the South Asian community are doubly affected by dementia in relation to post-diagnostic support because 1) they received very little post-diagnostic support and 2) even when they did, it wasn’t culturally appropriate and therefore ineffective. Essentially, the lack of culturally inclusive care compounds the lack of access further. Consequently, people discussed current gaps in service provision, making recommendations that will result in better support, and more positive experiences for South Asians when diagnosed with dementia in England. In order to achieve this, South Asians in need of dementia support should be involved in the planning, development and delivery of post-diagnostic support services.

Conclusions: This paper discusses findings that highlight the importance and benefits of co-production whereby people who use services and carers work with professionals in equal partnerships towards shared goals.

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