ADAPT: The south Asian Dementia diAgnosis PaThway – an online toolkit of enhanced interventions
Funding
National Institute for Research (NIHR) Research for Patient Benefit (RfPB) Ref. NIHR200736
What is the research question?
To identify the elements of an online toolkit that can be drawn on as necessary by commissioners, clinicians and care teams to meet the local needs of South Asians living with dementia.
What is the problem?
There are about 25,000 people living with dementia from Black, Asian and other Minority Ethnic (or BAME) communities in the UK. Over the next thirty years, this figure will increase sharply so that around 150,000 people from BAME communities are likely to develop dementia. The south Asian (Pakistani, Indian and Bangladeshi etc) community is thought to be the biggest minority ethnic group in the UK. South Asian people are more likely to be diagnosed with dementia at a later stage and when their symptoms are much worse than is the case for white British people. They are therefore less likely to be given medication or receive recommended treatments for dementia. There are also differences in the support that they receive. South Asian people tend to rely on support from community groups that are usually led by staff who are not dementia trained. All of these issues mean that south Asian people are at a disadvantage and the NHS and social services do not always support them appropriately.
What is the aim of the research?
The purpose of this study will be to improve how dementia services meet the needs of south Asian people. We will do this by creating an online toolkit of culturally appropriate resources and bringing them together in one place for health and social care professional to access and use in their workplace. Local services will be able to select parts of the toolkit that suit the needs of their areas best. By making dementia services easier to use, people are diagnosed at an earlier stage and therefore have more support and treatment available to them.
How will this be achieved?
The first part of this project will involve speaking to people from different south Asian communities who are affected by dementia to find out the best way to assess dementia and provide support. We will then look into how the NHS and community groups can work best together. We will create video clips of south Asian people talking about ‘best practice’ when working with south Asian communities for example how to work with interpreters in a hospital setting. We will bring all these resources together and create an online toolkit. We will then share our findings by using social media and hosting events in Bristol, Bradford and Wolverhampton.
Who is leading the research?
Prof Richard Cheston, Professor of Dementia Research, Centre for Health and Clinical Research, University of the West of England.
Dr Sahdia Parveen, Senior Research Fellow, Centre for Applied Dementia Studies, University of Bradford.
Further information:
For more information or to get involved in this project, please contact bnssg.research@nhs.net.
The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.