Implementation and evaluation of the ADAPT toolkit to improve the dementia care pathway for South Asian Families (ADAPTi)
Funding:
NHS Bristol, North Somerset and South Gloucestershire ICB Research Capability Funding.
What is the problem?
It is currently estimated that 50,000 people from minority ethnic (ME) background are living with dementia. A seven-fold increase is expected by the year 2051, compared to a two-fold increase in the White British population. The South Asian (Pakistani, Indian, Bangladeshi, Sri Lankan etc) community is considered the largest ME group in the UK, with a higher likelihood of experiencing inequalities across the dementia care pathway. People of South Asian backgrounds are less likely to receive a timely diagnosis, appropriate medication, or support. South Asian families are more likely to receive a diagnosis at an advanced stage of dementia and often solely at ‘crisis point’.
The ADAPT study (funded by NIHR RfPB, NIHR200736, and hosted by NHS Bristol, North Somerset and South Gloucestershire ICB), developed an online toolkit of evidence-based resources to culturally adapt and improve the dementia care pathway for South Asian families. The next step is to test how the toolkit can be applied in practice, prior to implementing the toolkit on a wider scale. The aims of this project directly align with the priorities of the ICB as the project will lead to improved outcomes for South Asian families, through tackling inequalities in experience of care as well as access to services.
What is the aim of the research?
The aim of this research project is to establish the feasibility and acceptability of the ADAPT toolkit to dementia practitioners, service providers/commissioners and South Asian families. We will explore how different services (primary care, memory assessment services, community-based dementia organisations) plan to apply the toolkit in their practice. To establish if the toolkit has been successful in culturally adapting the care pathway for South Asian families, we will explore what outcomes are important to stakeholders. Data and outcomes from both services and South Asian families will help us to develop a larger NIHR HSDR project, to implement and test the effectiveness of the toolkit in improving outcomes for South Asian families.
How will this be achieved?
A number of activities across Bristol and Bradford will be undertaken to develop a strong NIHR HSDR application focused on the implementation and realist evaluation of the ADAPT toolkit. PPI (Work package 0): This proposed project is underpinned by strong involvement and engagement of ‘experts by experience’. Two South Asian experts by experience who helped develop the ADAPT toolkit, will be actively involved in all aspects of the current project, including design, ethics, data collection/analysis and dissemination. They will also be actively involved in developing the future NIHR bid. Rapid reviews (Work package 1): As part of the original ADAPT study, two rapid reviews were conducted to identify culturally adapted and rigorously tested memory assessment tools and post diagnostic support packages. These reviews will be updated in the current project and reflected within the toolkit. Stakeholder engagement (Work package 2): A core aspect of this project will be conducting workshops with South Asian families, health and social care professionals, service providers/commissioners and community-based dementia organisations.
We will seek ethical approval from University of Bradford and conduct three workshops in Bristol and three in Bradford with each stakeholder group. Each workshop will consist of 5-8 stakeholders. The workshops will focus on establishing the feasibility and acceptability of the toolkit, how it could be applied in practice, barriers and facilitators to implementation, and identify key outcomes. Findings from these workshops will enable the development of initial programme theories (IPTs) to be tested in the proposed realist evaluation of the implementation of the toolkit in three sites in the larger NIHR project (Work package 3).
Who is leading the research?
This research is led by Dr Sahdia Parveen, Associate Professor, University of Bradford.
Further information
For more information or to get involved with this project, please email bnssg.research@nhs.net