Evidence
Alert

People with dementia from ethnic minority backgrounds face extra barriers in accessing care

People with dementia from ethnic minority backgrounds face inequalities in diagnosis and access to care, compared with White British patients. A large study in South East London found that at the time of diagnosis, overall, they are more likely to be on multiple medications, but less likely to be taking antidepressants. Some groups face problems with alcohol and substance abuse.

Researchers suggest that structures could be put in place to deliver earlier diagnosis for people from ethnic minority groups. Appropriate and consistent treatments should be offered sooner than at present.

What’s the issue?

The number of people living with dementia is forecast to rise significantly as people live longer. People from ethnic minority backgrounds might be more likely to develop dementia than the White British population; overall, the number of people with dementia in ethnic minority groups is projected to increase seven-fold by 2060.

Ethnic groups are distinctly different from each other and little is known about the association between ethnicity and dementia among older people. A lack of awareness that people from different groups may have different symptoms in the early stages of dementia could delay diagnosis.  It may also reduce access to some treatments.

This study examined how people from various ethnic minority groups differ from the White British population, which has been more widely studied to date.

Researchers considered people’s symptoms, their daily functioning at the time of dementia diagnosis, and the drug therapies they were taking.

What’s new?

This study was carried out in South East London, one of the UK’s most ethnically diverse areas. It drew on the anonymised electronic health records of a large dementia and mental health care provider and included 12,154 patients, with an average age of 82. All were diagnosed with dementia between 2007 and 2015.

Researchers used the Clinical Record Interactive Search (CRIS) system at the NIHR Maudsley Biomedical Research Centre, which contains data on ethnicity, mental health symptoms and medication.

The research among dementia patients found that, compared with White British patients:

  • Black African and Black Caribbean patients were more likely to have psychotic symptoms and were less likely to be prescribed antidepressants
  • depressive symptoms were more common in South Asian and Other White patients
  • people in all ethnic minority groups were more likely to be prescribed a combination of four or more different medications (of any class)
  • diagnosis of vascular dementia, a type of dementia which is caused by a lack of blood to the brain and can follow a stroke, was more common in Black and Irish patients.

Why is this important?

Improving detection of dementia remains a public health priority, particularly among ethnic minorities, who are not well represented in dementia research. This study found that people from ethnic minority backgrounds may have different mental health problems from White British people when first diagnosed with dementia. This may reflect inequalities in access to diagnosis and treatment.

Targeted approaches could help in several areas:

  • The finding that older Black Caribbean, Black African, and Irish people were more likely to have vascular dementia suggests a need for targeted public health. These groups may benefit from interventions to improve vascular risk factors such as diabetes, high blood pressure or high cholesterol.
  • The lower use of antidepressants among Black Caribbean and African patients may be because depression is less likely to be diagnosed, or because of increased stigma associated with these drugs in these groups.
  • The alcohol and substance abuse seen in some groups in this study led researchers to call for more screening of older people. Addressing these problems early could protect cardiovascular health and reduce the risk of dementia.
  • People from ethnic backgrounds were more likely to be on multiple medications. Groups using multiple medications are known to have increased risk of death, hospitalisation and other negative outcomes. Multiple prescriptions could reflect greater health problems but might also be a result of harmful prescribing practices for patients in these groups. It could be that they are less likely to have their prescriptions reviewed and reduced than White British people.

What’s next?

This project is part of wider work using electronic heath records to study experiences of dementia in routine mental health care and health inequalities.

The research team suggest that further studies should look at questions raised by this study such as why multiple prescriptions are more common in ethnic minority patients.

Future research should examine barriers faced by people in these ethnic groups in accessing routine services, such as memory clinics, in a timely manner.

You may be interested to read

The abstract: Tsamakis K, and others. Dementia in People from Ethnic Minority Backgrounds: Disability, Functioning, and Pharmacotherapy at the Time of Diagnosis. JAMDA. 2020. doi: 10.1016/j.jamda.2020.06.026

A previous paper on age and cognition: Mukadam N, and others. Ethnic differences in cognition and age in people diagnosed with dementia: A study of electronic health records in two large mental healthcare providers. Int J Geriatr Psychiatry. 2019;34:504-510

Another paper using the same data source, focusing on presentation of late-life depression: Mansour R, and others. Late-life depression in people from ethnic minority backgrounds: Differences in presentation and management. J Affect Disord. 2020;264:340-347

NIHR Maudsley Biomedical Research Centre information about the Clinical Record Interactive Search (CRIS)

 

Funding: This study was supported by the NIHR Biomedical Research Centre at South Maudsley NHS Foundation Trust and the Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

Very little research has been conducted on dementia in people from ethnic minority backgrounds, especially in the UK. What has been consistently shown is that compared to the White British population, people from ethnic minority backgrounds are diagnosed at younger ages with lower scores on cognition, which could indicate that the dementia is more advanced at the time of diagnosis. This raises concerns around inequalities, especially that people from ethnic minority groups might not have timely access to dementia services and the diagnosis is delayed. This is the first study to demonstrate this in UK ethnic groups, and the variation in differences was somewhat surprising.

Professionals and policymakers should be aware that preventive strategies may not yet be reaching people from ethnic minority communities, or healthcare practitioners looking after them. More inclusive approaches to prevention are necessary. Further, more consistent screening for alcohol problems in older people appears to be warranted, as an intervention to reduce drinking might reduce cardiovascular and dementia risk.

Christoph Mueller, Clinical Academic and Consultant in Old Age Psychiatry, South London and Maudsley NHS Foundation Trust and Institute of Psychiatry, Psychology and Neuroscience, King’s College London

Study author

The NHS collects huge volumes of information routinely on its services and there are important opportunities for monitoring and responding to these sorts of variations and inequalities in treatments. CRIS and CRIS-like data resources have proved very valuable for ‘opening up’ such opportunities in ways that would not have previously been possible; however, there is a need for more sites to become involved in these sorts of initiatives, so that we can achieve more equitable coverage.

Robert Stewart, Professor of Psychiatric Epidemiology & Clinical Informatics, Maudsley NIHR Biomedical Research Centre and Institute of Psychiatry, Psychology and Neuroscience, King’s College London

Researcher

It’s important to research the differences between and within ethnic groups regarding dementia symptoms, prescribing, and differences in access to healthcare services. It is concerning that there may be over- or under-prescription based on ethnic differences, which may not be related to patient need but clinical bias.

Outreach to these communities could increase access to healthcare services. Clinicians aware of ethnic differences may be better able to spot symptoms to improve prescription practices. Carers for people living with dementia could also benefit from better education about multiple medication management.

One limitation in this work is that the ethnic groupings are broad and there are large generalisations within each category. This is because of how data on ethnicity is currently collected and is a known issue with studies based on healthcare records.

Bliss Gibbons, Researcher in Culturally-Adapted Mental Health Services, Coventry and Warwickshire Partnership NHS Trust