What dementia means for ethnic minorities in the UK

It is reported that there are approximately 800,000 people living with dementia in the UK, 15,000 of whom come from Black and Minority Ethnic (BME) communities. The latter statistic is concerning because many of the people from BME groups living with dementia will receive no support or will be diagnosed too late for symptomatic treatments to help. There are several reasons for this. Predominantly, within the BME community, fewer referrals from GP’s reach a psychiatrist or neurologist. This can result in misdiagnosis, inappropriate treatment and ultimately a heavier burden on families and society to manage. One of the main reasons for lack of referrals from BME groups is due to inadequate diagnostic assessments. The thinking and memory tests that are carried out in the GP clinic compare performance to the majority White British population norms. So, the lack of BME norms on these tests is a huge hindrance in trying to reach a diagnosis of dementia in those people.

Cultural differences

The Pakistani community is the largest understudied ethnic minority group in the UK.

The Pakistani community is the largest understudied ethnic minority group in the UK, especially in Yorkshire and this has been the prime focus of my PhD. The aim was to study cultural differences in certain screening tools that are used to confirm a diagnosis of dementia in memory clinics. I also looked at standardising neuropsychological assessment tasks, translated and modified into Urdu/Punjabi so that Pakistanis can be tested in their own language, hopefully aiding better diagnosis; many Pakistanis now over the age of 60 and considered an ‘at risk’ group do not have the capacity to complete neuropsychological testing in English. I aimed to collect lots of data on young and elderly volunteers across the Yorkshire area of Pakistani ethnicity in order to help with standardising these tests. However, I did encounter problems with this, especially due to the stigma associated with dementia. Speaking about dementia, or as it is directly translated into Urdu as ‘insanity’ or of ‘unsound-mind’, was not as well received as one would expect in the 21^st century when the likes of meat-wearing fashion is deemed almost popular in the celebrity world!

Many Pakistanis, and the same could probably be said amongst other ethnic minorities, did take very well to the idea of someone from their own ethnic group approaching them, so data collection through a snow-balling sample was made relatively easier. The research findings suggest that education level, as well as age and cultural differences should be accounted for when testing Pakistanis with neuropsychological tests. This will give a better representation of the cognitive performance of these individuals than if we were to compare them to the general white British population.

Reducing stigma

My PhD was partially funded by Alzheimer’s Research UK for which I am forever grateful and it did mean that I could travel across the different locations with ease while collecting data on over 200 people. There is a lot more however, that needs to be done not only to lessen the burden on families and society, but also to reduce some of the stigma that still prevails amongst ethnic minorities. The Prime Minister has brought attention to dementia, by launching a challenge to find a cure by 2025. However, in order for this to happen we must not overlook the problems that BME groups face, but rather aim to understand and appreciate the differences in what dementia means for ethnic minorities in the UK and on a global scale.