Role: Lead Researcher
Commissioned by Alzheimer’s Society, this project began in June 2021 and was completed by November 2021
The increase in the numbers of South Asians in the 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.
Commissioned by Alzheimer’s Society, the aim of this project was to gather insight into the experiences of post-diagnostic dementia support for the South Asian community in England to identify:
- The experiences of people from South Asian communities in the assessment of post-diagnostic support.
- Whether post-diagnostic support needs of people from South Asian communities are being met.
- The impact of support needs of people from South Asian communities not being met.
As this project sought to understand experiences, a qualitative case-study approach was adopted. 12 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 interview. All interviews were audio recorded with consent and analysed using a thematic analysis.
Analysis revealed that there were a number of challenges receiving a timely diagnosis of dementia with very little to no post-diagnostic support offered by a healthcare professional. The difficulties they experienced were the result of; a lack of information about services and having to work through a fragmented pathway with little guidance. Once they were in contact with services, they faced additional barriers associated with the lack of culturally inclusive care, and lack of support as carers. As a result of their experiences, participants have been affected in all areas of their lives; mentally, physically, socially, and financially. Despite their outstanding resiliency and self-efficacy skills, many reported feelings of isolation, loneliness, anxiety and depression.
This study highlighted the importance and benefits of co-production whereby people who use services and carers work with professionals in equal partnerships towards shared goals. As a result of their experiences, the participants in this study have made recommendations that will result in better support, and more positive experiences for South Asians when diagnosed with dementia in England. These include: a dementia link worker to help them navigate their way through services; more healthcare workers from the South Asian community; the development of engaging resources about dementia in South Asian languages, greater use of technology and media for sharing information, the involvement of family members to help support healthcare professionals, and peer support and counselling. Future research should investigate: the link between depression and dementia; the development of culturally appropriate diagnostic tools; the experiences of people who may be caring for a person who is not a registered resident in the UK and; the development of non-pharmacological interventions for South Asians and younger people living with dementia.
To read the full report click here.