People living with dementia from South Asian communities will benefit from improved, culturally sensitive support, thanks to a new online toolkit launched by universities, including the University of Bath, and charities.
Hosted by the Race Equality Foundation, the toolkit will provide enhanced care for members of South Asian communities – many of whom receive significantly less effective dementia care from statutory services compared to their counterparts from White British communities.
People from South Asian communities are at greater risk of developing dementia but are less likely to access all points of the care pathway – and more likely to present in crisis and/or at a later stage.
They are also more likely to face barriers including a late or missed diagnosis, reduced access to treatments, and inappropriate or inadequate support coupled with problems caused by language barriers. They often rely on local, community-led organisations for support.
Alarmingly, the number of people from South Asian communities with dementia is expected to increase sevenfold by 2051, due in part to inequalities in service provision and the increased risk of other health factors associated with dementia. For White British people, the rise is expected to be more modest, albeit sizeable, doubling over the same time period.
Combatting the current one-size-fits-all model, the South Asian Dementia Pathway Toolkit (ADaPT) aims to provide more accessible, tailored resources enabling services to provide more culturally appropriate care. Designed to address the uphill struggle that many people from South Asian backgrounds face, the toolkit includes short films, animations, awareness raising materials, assessments and post-diagnostic support – all of which have been culturally and linguistically adapted for people from South Asian communities.
To ensure the toolkit was designed to meet the needs of these communities, public participants from South Asian communities (along with staff from voluntary and statutory services) were asked to share their experiences and feedback about the current level - or lack - of support and to identify what more was needed.
The project was jointly led by researchers from the University of the West of England (UWE Bristol) and the University of Bradford, with other collaborators including the Race Equality Foundation, the Dementia Alliance for Culture and Ethnicity and NHS Bristol, North Somerset and South Gloucestershire CCG, as well as researchers from the universities of Bath and Wolverhampton. It was funded by the National Institute for Health Research, under its Research for Patient Benefit Programme, and has been launched in Dementia Action Week.
Co-applicant on the grant, Dr Paula Smith from Bath’s Department of Psychology was involved in interviews and workshops with participants from voluntary and statutory services, as well as individuals who live with and support those with dementia from South Asian communities.
She said: “This is an important project that brings to life better understanding of the experience of people from South Asian backgrounds who are impacted by dementia. By listening to them, and by working with voluntary and statutory providers of services, we have been able to identify important tools and insights, and to bring them together in this online resource.
“We hope that this will be a useful tool in helping to identify culturally sensitive and appropriate support which can benefit those living with, and supporting people, with dementia from South Asian communities in the years to come.”
Professor Richard Cheston, an expert in dementia research at UWE Bristol, said: “Many people from different south Asian communities receive their diagnosis at a later stage, often when they are in crisis, and when they do use these services then they tend to be less satisfied with the care they receive. In essence, the services have little flexibility and are often designed around assumptions about who will use them, which means that people who don’t fit into these assumptions are at a disadvantage. One contributor described them as ‘Caucasian-centric’.
“The website has been produced from reviews of literature and research but also interviews and focus group workshops carried out with 90 people either affected by dementia and who are from different South Asian backgrounds, or who have provided services to these communities.”
Jabeer Butt OBE, CEO of the Race Equality Foundation, said: “The powerful stories we heard from South Asian people interviewed in this project sent a clear message about the urgent need for culturally appropriate help. Dementia has been described as a taboo subject in the Asian community and this is just one of the barriers that needs to be broken down to correct inequalities in this area. We hope that this toolkit will be a game changer in the support available to those living with, caring for and working with people with dementia from South Asian communities.”