The south Asian Dementia diAgnosis PaThway (ADAPT): An online toolkit of enhanced interventions
This project is funded by the National Institute for Health and Care Research under its Research for Patient Benefit Programme (grant reference number NIHR200736). The study involved a collaboration between universities and voluntary and community sector organisations including: University of the West England, University of Bradford, University of Wolverhampton, University of Bath, Race Equality Foundation and the Dementia Alliance for Culture and Ethnicity.
There are approximately 25,000 people from Black, Asian and Minority Ethnic (BAME) communities live with dementia in the UK. The largest single grouping are people whose origins are from South Asian countries. People from South Asian communities are at greater risk of developing dementia. However, they are less likely to access all points of the dementia care pathway – and more likely to present in crisis and/or at a later stage in this community.
There is also a difference in service use. For South Asians, symptoms are more likely to be missed or mis-interpreted with less access to NICE recommended treatments including medication. There is also greater reliance on community groups for support (who are often not dementia trained).
South Asians are therefore disadvantaged compared to their white counterparts. Multiple interventions are required to ensure people from South Asian communities have equitable access to dementia care services via an enhanced dementia care pathway.
Funded by the National Institute for Health Research (Research for Patient Benefit programme) the aim of this project was to create an online toolkit of culturally appropriate assessments and interventions that support people from South Asian communities across the dementia care pathway.
The design of this study included four work packages:
Work Package One (Leads Dr Sadia Parveen, University of Bradford and Dr Karan Jutlla, University of Wolverhampton). This work package involved two stages: 1) a rapid review to identify culturally specific versions of materials and processes relating to key areas of the dementia pathway and 2) workshops with people affected by dementia and health/social care workers to evaluate these materials and how they can be used to adapt each element of the pathway. We also identified best practice changes to the pathway.
Work Package Two (Leads Professor Richard Cheston, University of West England and Dr Paula Smith, University of Bath). This work package involved interviews and workshops with voluntary and statutory organisations to identify barriers to joint working. A number of case study animations were created to illustrate key difficulties.
Work Package Three (Leads Mr David Truswell, Dementia Alliance for Culture and Ethnicity and Mr Jabeer Butt, Race Equality Foundation). This work package involved the development of video testimonials that relate to the issues identified in work package one and two.
Work Package Four (Leads Professor Richard Cheston and Dr Emily Dodd, University of West England). This work package involved drafting the toolkit based on the analysis of work packages one, two and three.
All of our work was guided by a steering group and public contributors.
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.
Now that the toolkit has been developed, further work must be done to identify implementation strategies for the various sectors, including evaluation to assess for impact.