ADaPT online toolkit for people with dementia from South Asian communities
The online toolkit was developed by researchers from the Universities of the West of England (UWE Bristol), Bradford, Bath and Wolverhampton and collaborators including the Race Equality Foundation, the Dementia Alliance for Culture and Ethnicity; and 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.
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.”
The public contributors and those working within the voluntary and statutory service, also made sure the research team was aware of of the different language, cultures and experiences of South Asian communities, and ensured the best wording was used when referring to the customs, approaches and cultural perspectives of people from South Asian communities.
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.
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.
Inclusion of people from Black, Asian and other minority ethnic communities in research on dementia
This case study, written by Subitha Baghirathan, aims to share some flexible and original ways (or methodology) of hearing from Black, Asian and other minority ethnic (BME) people on a health topic which holds stigma across a range of communities: dementia. Despite the short 8 month time-frame of this study and the fact that only one part-time researcher was employed to gather people’s perspectives and experiences, a considerable number and range of people took part from communities often assigned the homogenous label ‘hard to reach’.
Their approaches to encourage and enable people’s participation are arguably of value to share with other researchers, as BME people are frequently invisible in research including clinical research, unless that research has a specific ‘race equality’ or ‘diversity’ theme to explore.