What place digital in family support for people with dementia in South Asian communities
Why the research is needed?
Speaking with members of South Asian community in Nottingham and Leicester, there is a lack of culturally appropriate support for people with dementia and their families. Our recent study indicated that South Asian people experience delays in accessing diagnostic services. This may imply that people experience barriers in accessing services, including a lack of culturally appropriate services. Other possible reasons for delayed diagnosis may include stigma within the community and racial discrimination within health services. From a rights-based perspective, people of diverse ethnic heritages have a right to culturally appropriate support to promote their wellbeing. Further improving social interaction is a key factor in prevention of dementia, according to the Lancet commission.
What is already known about the subject?
There is growing urgency in developing culturally appropriate communications and resources for South Asian communities; culturally adapted resources have been developed for diagnosis and other services. However, health and social care services are increasingly relying on digital technology to coordinate and access services. Lack of cultural adaptation of digital technology is an additional barrier to using the internet to access services, in addition to the digital divide for older people which is widely acknowledged. On the other hand, digital technologies enable communication across distance and across national barriers. Online communities can be based on common interests and can connect diaspora with family back home. Previous studies have explored how web resources, mobile phone apps and interactive speakers (eg Alexa) can be used to support people with dementia; in this project we will explore which of these resources may offer culturally appropriate media and information for people with dementia and their families. These may include web directories of local organisations and memory cafes or meeting centres.
Who we are working with?
Indian Community Centre Association, Nottingham CVS, Centre for Ethnic Health Research, British Association of Physicians of Indian Origin. The project is funded by Alzheimer’s Society and NIHR ARC.
How are patients and the public involved?
We have started consulting with members of the South Asian community and community organisations. We will initiate an advisory group including key stakeholders including members of diverse communities (Pakistani and Indian) as well as practitioners or professionals. This group will meet quarterly and contribute to development of funding applications.
What we will do?
Community workshops will use creative and arts-based approaches to build relationships and start conversations about memories of events and changes within Nottingham and Leicester. We will discuss which digital technologies members of the community are currently using for entertainment, meaningful activity and social interaction. We will ask community members to try newly developed technologies for people with dementia, for example ‘find my app’, and discuss whether these could be culturally adapted.
What the benefits will be?
The benefits will be to raise awareness about resources that may be beneficial to people with dementia and their families. The project will aim to identify gaps in culturally appropriate digital resources and seek to co-design resources which could be developed in future.
When the findings will be available?
Findings will be available from Autumn 2024.
How we are planning for implementation
We aim to share early findings with community partners. We will work with technology developers to explore potential for development of future technologies.
Neil Chadborn, senior research fellow, University of Nottingham, Neil.firstname.lastname@example.org.