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Dementia diagnoses in minority ethnic groups

Diagnosis, assessment and treatment.


The complexities of dementia diagnoses in minority ethnic groups

Potential barriers to the assessment and to the accurate and timely diagnosis of dementia

Ethnicity is unlikely to have an impact on pathological processes underlying the appearance and evolution of dementia syndromes (Khan and Tadros 2014) and the symptoms of dementia seem to be similar across different ethnic groups (Nielsen et al. 2011a). However, there are certain issues which render the timely and accurate diagnosis of people from minority ethnic groups more problematic compared to people from the majority ethnic group. Examples of potential barriers to timely and accurate diagnosis include difficulties with language and communication, cultural perceptions of dementia and health, stigma and taboo, prejudice, structural discrimination and failure of GPs to refer patients from minority ethnic groups (Beattie et al. 2005, Nielsen at al. 2011a and 2011c).  Some of these barriers have been discussed in Section 2 of this report in relation to initial help seeking. However, the combined impact of these factors on initial help seeking and on receiving an accurate diagnosis may contribute towards people from minority ethnic groups being diagnosed at a later stage of dementia. This, in turn, may affect their quality of life in that they do not receive support and treatment in the earlier stage of dementia.  This sub-section starts with a brief overview of issues related to under and over-diagnosis of people from minority ethnic groups and considers possible predisposing/risk factors for certain groups, before moving on to explore some of the key issues which may affect timely and accurate assessment and diagnosis.

Prevalence of dementia and certain symptoms of dementia in people from minority ethnic groups: under-diagnosis and misdiagnosis

As mentioned in the Introduction, the proportion of older people within minority ethnic groups living in Europe is increasing (Nielsen et al. 2011, Diaz, Kumar and Engedal 2015) and many will develop dementia in the next few decades (APPGD 2013, Prince et al. 2015, Nielsen et al. 2015, Parlevliet 2017). In the Netherlands, for example, non-Western immigrants accounted for 4.7% of the population in 2014, and it is estimated that this will increase to 8.5% in 2030 (Parlevliet et al. 2016[1]). Timely consultation and diagnosis of dementia amongst minority ethnic groups is essential to ensure that people from these groups have access to support and treatment on the same basis as people from majority ethnic groups.

Whilst people from minority ethnic groups experience the same symptoms of dementia as people from the majority ethnic group, they may describe them differently and have difficulty doing so because of limited linguistic abilities and lower levels of education (Nielsen et al. 2011a). In addition, GPs may encounter difficulties understanding the person from a minority ethnic group (due to language and the way the person expresses him/herself) and correctly interpreting answers to questions about the person’s cognitive and physical functioning. Some professional care workers in the UK have expressed the opinion that most GPs lack the cultural and linguistic skills to diagnose people from minority ethnic groups (Beattie et al. 2005). However, in most cases, GPs and specialists do not have access to culturally and linguistically appropriate cognitive test instruments and dementia rating scales (see next sub-section on this topic).

Despite the diagnosis of dementia being a complex process, with additional challenges for the diagnosis of people from minority ethnic groups, many people are not referred by their GP to a specialist. In a Swedish study, for example, GPs estimated that they referred less than 20% of their patients to a specialist for a possible diagnosis of dementia (Olafsdóttir, Foldevi and Marcusson 2001). Most people with dementia do not receive a formal diagnosis, either from their GP or from a specialist (Diaz, Kumar and Engedal 2015). Nielsen et al. (2015) point out that in Denmark, only 11% of the expected number of older people from minority ethnic groups with dementia receive a formal diagnosis of dementia.

A UK-based study comparing the number of people from White, Black and Asian ethnic groups diagnosed with dementia in 2015 revealed differences in the proportions of people from White, Black and Asian ethnic groups receiving such a diagnosis (Pham et al. 2018). People from Asian ethnic groups had the lowest proportion of diagnoses, followed by people from Black ethnic groups, with a slightly higher proportion of diagnoses, and people from the White ethnic group having the highest proportion of diagnoses. In a Norwegian study, the diagnoses of over one and a half million people over the age of 50 were analysed (Diaz, Kuman and Engedal 2015). The researchers compared diagnoses of dementia and diagnoses of memory impairment (25,915 patients) within two groups, classified as Norwegian and immigrant (most immigrants having lived in Norway for more than two decades). They found a significantly higher proportion of diagnoses of dementia in the Norwegian group. The researchers involved in these studies acknowledge that whilst a lower prevalence of dementia in the immigrant groups cannot be ruled out, other explanations probably explain the findings.  For example, general practitioners may sometimes overlook patients’ difficulties using or finding the right words if those patients have never been able to speak the language fluently (Uysal-Bozkir 2016).

In addition to probable under-diagnosis of people with dementia from minority ethnic groups, evidence of over-diagnosis has also been found, with unusually higher rates of diagnosis in some minority ethnic sub-groups being recorded (Nielsen et al. 2011b). In a population sample consisting of 67,219 people from minority ethnic groups in Denmark, diagnoses of dementia were compared to rates observed in the overall Danish population. In the 40 to 59 age group, prevalence was similar to that of the general population for men but more than double for women from minority ethnic groups. In the 40-49 age-group, prevalence was twice as high for men and almost three times as high for women in minority ethnic groups. Rates for the 60+ age group suggested considerable under-diagnosis (one seventh of the general rate for men and one third the general rate for women from minority ethnic groups). Nielsen et al. (2011) point out that low prevalence rates in the under 65 age group of people from minority ethnic groups have been found in other studies in Sweden and the UK and suggest that the higher rates recorded in Denmark could reflect misdiagnoses.

Differences in the prevalence of behavioural and psychological symptoms of dementia (BPSD) in people from minority ethnic groups have also been reported.  Diaz and Qureshi (2017) describe findings from a UK study which suggests that people with dementia from the Indian sub-continent have a lower prevalence of anxiety and phobias compared to the majority ethnic group. In a review of research into the prevalence of BPSD amongst different ethnic groups in a range of countries, several differences were found but none of these were based on European populations[2] (Shah, Dalvi and Thompson 2005). The exact reasons for these differences are not known. 

There is also some evidence that people from minority ethnic groups do not receive the same quality of diagnostic evaluation for dementia. Nielsen et al. (2011c) evaluated the diagnostic workup for people diagnosed with dementia from minority ethnic groups in Denmark. They found that only 23% of patients had received an acceptable workup (i.e. consisting of well-conducted diagnostic tests and evaluations). Compared to the majority ethnic group, significantly fewer patients from minority ethnic groups received a detailed history of cognitive symptoms, a cognitive test, neuroimaging, blood tests and a test of activities of daily living, were significantly lower as part of their diagnostic workup. This suggests that they received a sub-standard diagnostic evaluation.

Nielsen et al. (2011b and 2011c) further point out that their results, as well as those of several other studies, suggest that many people from minority ethnic groups are misdiagnosed as having dementia, and that some may have psychiatric disorders. Beattie et al. (2005, p.71) suggest that “there is a historical and pervasive racism in the mental health system that would lead black people to be mislabelled as having dementia when they really had a different mental health problem”. Most of the people from minority ethnic groups involved in the Danish study mentioned above received a diagnosis with no specification of the type of dementia and without subsequent follow-up or treatment (Nielsen et al. 2011b).

Nielsen et al. (2011c) draw attention to linguistic and cultural factors affecting evaluations, to the way that interpretation is provided, with a heavy reliance on assistance from relatives, to compliance of patients from minority ethnic groups with the diagnostic process, to difficulties distinguishing depression from early dementia and to the lack of culturally appropriate assessment and diagnostic tools (these issues are discussed further in this section). 

Predisposing/ risk factors

When looking at different factors which might explain a higher or lower prevalence of dementia amongst people from minority ethnic groups, it is important to consider possible factors which might predispose or on the contrary protect people from certain ethnic groups from developing dementia. These factors are mainly linked to other medical conditions, to people’s life experiences or to some of their lifestyle habits. In most cases, they increase a person’s likelihood of developing dementia. For example, some minority ethnic groups are at greater risk of diabetes and vascular disease, and both of these conditions are recognised risk factors for dementia (Richards et al. 2000, Adelman 2011, Bhattacharyya and Benbow 2013, European Union 2014, Uysal-Bozkir et al. 2016). Higher rates of stroke in young adults in some minority ethnic groups and of depression, especially in women, have also been reported (see Nielsen et al. 2011b). A few studies have found high rates of hypertension amongst people of African origin living in the UK and the USA (Livingston et al. 2017).

Type 2 diabetes is up to six times more common in people of South Asian origin (of Indian, Pakistani and Bangladeshi descent) in the UK (Khunti, Kumar and Brodie 2009). According to Sattar and Gill (2015), migrant South Asians seem to be more insulin resistant than White Europeans but there is no clear evidence suggesting genetic factors for increased rates of diabetes. Sattar and Gill suggest that epigenetic factors[3] may contribute considerably and that South Asians should be “encouraged and helped, by various culturally appropriate methods, to maintain a high physical activity level and low bodyweight across the life course to prevent diabetes”. Given the relationship between diabetes and cardiovascular conditions within some minority ethnic groups and the increased risk of developing dementia, there is an urgent need to raise awareness about dementia, develop culturally appropriate diagnostic tools but also to develop preventive strategies specifically targeted at minority population which are at greater risk of dementia (Nielsen et al. 2011b).

A few recent studies suggest that non-medical factors such as social isolation, lower socio economic status and having a lower cognitive reserve[4] also increase the risk of developing dementia (Livingston et al. 2017). As pointed out by Qureshi and Diaz (2017), these factors are quite common amongst people who have experienced migration (and might also apply to many people from minority ethnic groups without a migratory background). Although people from some minority ethnic groups might be more affected by certain risk factors and hence at higher risk of developing dementia, some of those who migrated to Europe might also have more opportunities to reduce the risk of developing dementia (e.g. through increased awareness and knowledge about risk factors and healthy lifestyles, and perhaps through having the means to act on that information). However, the very factors which might increase risk, probably interfere with the ability to benefit from such opportunities.

[1] Based on figures from Statistics Netherlands [Centraal Bureau voor de Statistiek]

[2] With the exception of one UK study.

[3] “Whenever two genetically identical individuals are non-identical in some way we can measure, this is called epigenetics…… epigenetics can be defined as the set of modifications to our genetic material that change the ways genes are switched on or off, but which don’t alter the genes themselves” (Carey 2012, p.6-7)

[4] This term is used to describe how some people can maintain normal cognitive functioning despite having damage to their brains. As they have a greater brain reserve in the first place, damage to the brain does not have as great an impact on their cognitive performance (e.g. language, reasoning and memory). It is believed that education/learning helps increase this reserve.  For a more detailed explanation of cognitive reserve, please see: https://www.health.harvard.edu/mind-and-mood/what-is-cognitive-reserve


Key points

  • Certain factors such as diabetes, high blood pressure, depression, social isolation, lower socio-economic status and having a lower cognitive reserve, which tend to be more frequent amongst people from some minority ethnic groups, may increase the risk of developing dementia.
  • Some people from minority ethnic groups have an increased risk of developing dementia and the population of older people from minority ethnic groups, who have or may eventually develop dementia, is increasing. The diagnosis of people from these groups remains problematic, often resulting in under-diagnosis and for some sub-groups in misdiagnosis.
  • Language difficulties and lack of cultural awareness may result in symptoms of dementia not being detected by healthcare professionals (e.g. because some patients already have communication problems to start with, because they may describe symptoms in a different way and because they may express or deal with symptoms in different ways).
  • GPs often fail to refer their patients to a specialist for a full diagnostic evaluation for dementia.
  • Many people with dementia from minority ethnic groups receive a sub-standard diagnostic work up compared to that provided to majority ethnic groups (i.e. consisting of well-conducted diagnostic tests and evaluations).
  • Some studies report a lower percentage of people from minority ethnic groups receiving a diagnosis with specification of the type of dementia that they have. 

Recommendations

  • Attention should be paid to the management of risk factors which are potentially modifiable (e.g. high blood pressure, obesity and diabetes) and more prevalent in some minority ethnic groups.
  • Measures should be taken to improve timely and accurate diagnosis of dementia amongst minority ethnic groups. The fact that people visit their GP with complaints relating to dementia risk factors such as cardiovascular disease and diabetes may be helpful in initiating discussion about dementia.
  • Further research is needed to explore challenges for general practitioners, neurologists, geriatric psychiatrists and other healthcare professionals involved in diagnosis and issues related to the under-diagnosis as well as misdiagnosis, especially resulting in the over-representation of dementia in younger minority ethnic populations.  
  • More research is needed into the prevalence of BPSD amongst people from minority ethnic groups and into how people from minority ethnic groups cope with these complex needs.

 

 
 

Last Updated: Wednesday 08 May 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020) and from the Robert Bosch Stiftung. The content of the report represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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