Transforming assessment and diagnosis of dementia in Bristol for people from Chinese, Caribbean and South Asian and communities

Funding

National Institute for Health and Care Research (NIHR) Programme Development Grant (PDG) Ref. NIHR207093

What is the Research Question?

Will adapting the current pathway for dementia services for people from the Chinese, Caribbean and South Asian communities improve their experiences of assessment, diagnosis and treatment?

What is the problem?

Our research partnership is a collaboration between the leaders of three community groups in Bristol which provide support to people from Chinese, Caribbean and South Asian communities and researchers from UWE Bristol and the Black South-West Network. In order to find out what were the most important priorities for local communities, we held a series of meetings with Chinese, Caribbean and South Asian Bristolians during 2023. The participants in these meetings were clear that they saw better assessment and diagnosis as a priority. For instance, a Chinese woman told us: “I don’t think the GP listens to me and takes my Mum’s situation seriously – they always say she is fine”. Other participants told us that they preferred to try to cope on their own, because they didn’t trust the NHS to understand what they needed. Many people were reluctant to approach their GP and preferred instead to rely on local, community-based support.

This is a problem because we know that while people from all three communities (Chinese, Caribbean and South Asian) are at high risk of developing dementia they are also less likely to be diagnosed than are people from white communities. In addition, they are often diagnosed at a later stage in the illness for instance when they are in crisis. As a consequence, they can miss out on important treatment.

What is the aim of the research?

We want to find out how community organisations can work together with the NHS to improve the current assessment process. We hope that this will improve the way in which people from Chinese, Caribbean and South Asian communities are assessed, diagnosed and supported after the diagnosis.

How will this be achieved?

We want to tackle these problems by improving the way assessment and diagnosis currently happen. First, we will help people in these three communities to recognise the symptoms of dementia and to improve their understanding of the illness.

Second, we will work together with the NHS and GPs to enable people to either refer themselves for an assessment or for a community organisation to be able to do this for them. Local dementia clinicians will then work together with staff from the community organisations to carry out the assessment.

Third, we will identify clear standards for assessment, diagnosis and treatment that will mean that people understand what they can ask for from services.

We expect that the new pathway will lead to more people being correctly diagnosed as having a form of dementia and that these diagnoses will take place earlier in the illness. This will mean that people have more time to adjust to it and have more treatment options open to them.

As this is a new pathway, we want to find out what obstacles and barriers there may be in changing the assessment process in this way. We also want to know whether the staff from the NHS and from community organisations feel comfortable making the assessments and whether patients and their families feel it is an improvement. We will make a film to record the experiences of patients and their families and use this to communicate the results of the project across our three communities in Bristol and to the rest of the UK.

Who is leading the Research?

The research is jointly led by an academic researcher (Professor Rik Cheston from the University of the West of England, Bristol) and a community researcher (Emily Choi from the Chinese Community Wellbeing Society).

Further Information:

CI Email: Richard.Cheston@uwe.ac.uk or emily@chinesecws.org.uk

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.