An open mind

Why are minority-ethnic groups more at risk from dementia? Dr Naaheed Mukadam explains how UCL inspired her to investigate the genetic and societal factors at play

Dr Naaheed Mukadam stands in a lecture theatre at UCL, wearing a bright yellow dress. Outside the window is a construction site for a new UCL building, and a crane

This article first appeared in issue 8 of Portico magazine, published November 2021.

I first came into contact with UCL when I was on the psychiatry training rotation programme at the Royal Free Hospital. A number of UCL academics gave lectures, and hearing them speak about their research in dementia and psychiatry was really inspiring. I realised that there’s so much more knowledge to be gained about the conditions that I was seeing and treating. You could really make a difference to a much larger group of people by doing clinically relevant research than by just seeing them in a clinic. I joined the hospital’s metabolic and clinical trials unit, and working there on my special-interest days gave me a taste for conducting my own research. So I contacted Professor Gill Livingston from the UCL Division of Psychiatry, who suggested I try a Master’s at UCL.

This article first appeared in issue 8 of Portico magazine, published November 2021.

I first came into contact with UCL when I was on the psychiatry training rotation programme at the Royal Free Hospital. A number of UCL academics gave lectures, and hearing them speak about their research in dementia and psychiatry was really inspiring. I realised that there’s so much more knowledge to be gained about the conditions that I was seeing and treating. You could really make a difference to a much larger group of people by doing clinically relevant research than by just seeing them in a clinic. I joined the hospital’s metabolic and clinical trials unit, and working there on my special-interest days gave me a taste for conducting my own research. So I contacted Professor Gill Livingston from the UCL Division of Psychiatry, who suggested I try a Master’s at UCL.

This article first appeared in issue 8 of Portico magazine, published November 2021.

I first came into contact with UCL when I was on the psychiatry training rotation programme at the Royal Free Hospital. A number of UCL academics gave lectures, and hearing them speak about their research in dementia and psychiatry was really inspiring. I realised that there’s so much more knowledge to be gained about the conditions that I was seeing and treating. You could really make a difference to a much larger group of people by doing clinically relevant research than by just seeing them in a clinic. I joined the hospital’s metabolic and clinical trials unit, and working there on my special-interest days gave me a taste for conducting my own research. So I contacted Professor Gill Livingston from the UCL Division of Psychiatry, who suggested I try a Master’s at UCL.

Close up shot of Dr Naaheed Mukadam, she is wearing a bright yellow dress and smiling at the camera

My research topic was around ethnicity and pathways to diagnosis and care for dementia in different ethnic groups. It was prompted by my clinical experience working in a memory clinic, where I sensed that people from minority-ethnic groups often had more advanced dementia than those from the white population. My Master’s research revealed that there seemed to be differences in ethnic groups and how they presented for dementia, so it felt like a natural progression to see whether there was something that could be done about it. This led to my PhD, investigating if there was some sort of intervention to encourage people from different ethnic groups to get help earlier.

My research topic was around ethnicity and pathways to diagnosis and care for dementia in different ethnic groups. It was prompted by my clinical experience working in a memory clinic, where I sensed that people from minority-ethnic groups often had more advanced dementia than those from the white population. My Master’s research revealed that there seemed to be differences in ethnic groups and how they presented for dementia, so it felt like a natural progression to see whether there was something that could be done about it. This led to my PhD, investigating if there was some sort of intervention to encourage people from different ethnic groups to get help earlier.

My research topic was around ethnicity and pathways to diagnosis and care for dementia in different ethnic groups. It was prompted by my clinical experience working in a memory clinic, where I sensed that people from minority-ethnic groups often had more advanced dementia than those from the white population. My Master’s research revealed that there seemed to be differences in ethnic groups and how they presented for dementia, so it felt like a natural progression to see whether there was something that could be done about it. This led to my PhD, investigating if there was some sort of intervention to encourage people from different ethnic groups to get help earlier.

During my PhD, I discovered that little was written or known about dementia prevention in minority-ethnic groups. I was working for the Lancet Commission on dementia, pulling together studies on risk factors, their impact and how by targeting those factors, you could minimise the chances of the condition developing. I found that much of this research was done in higher-income countries and focused on the white population. The same was true for the genetics of dementia – it’s considered standard and acceptable procedure to have as homogenous a population as possible for your study. This sparked my interest in whether dementia risk factors are the same in all of these ethnic groups. Do they have the same impact and are there any genetic differences?

I discovered that in the more affluent, educated people that I’ve studied, the impact of risk factors such as diabetes and high blood pressure is the same across ethnic groups. However, when looking at primary care data, the impact of these risk factors seems to differ across ethnic groups – they are much more common in south Asian and Black populations compared to the white population. The potential to prevent dementia may be higher in these groups simply because they have more risk factors. Equally, being more proactive about managing and treating risk factors could reduce the chances of developing dementia further in these groups. Meanwhile, from a genetics perspective, my results indicate that the methods we use to measure genetic risk and predict dementia don’t perform as well in minority-ethnic groups as they do in the white population. There’s no reason to exclude minority-ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies.

During my PhD, I discovered that little was written or known about dementia prevention in minority-ethnic groups. I was working for the Lancet Commission on dementia, pulling together studies on risk factors, their impact and how by targeting those factors, you could minimise the chances of the condition developing. I found that much of this research was done in higher-income countries and focused on the white population. The same was true for the genetics of dementia – it’s considered standard and acceptable procedure to have as homogenous a population as possible for your study. This sparked my interest in whether dementia risk factors are the same in all of these ethnic groups. Do they have the same impact and are there any genetic differences?

I discovered that in the more affluent, educated people that I’ve studied, the impact of risk factors such as diabetes and high blood pressure is the same across ethnic groups. However, when looking at primary care data, the impact of these risk factors seems to differ across ethnic groups – they are much more common in south Asian and Black populations compared to the white population. The potential to prevent dementia may be higher in these groups simply because they have more risk factors. Equally, being more proactive about managing and treating risk factors could reduce the chances of developing dementia further in these groups. Meanwhile, from a genetics perspective, my results indicate that the methods we use to measure genetic risk and predict dementia don’t perform as well in minority-ethnic groups as they do in the white population. There’s no reason to exclude minority-ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies.

During my PhD, I discovered that little was written or known about dementia prevention in minority-ethnic groups. I was working for the Lancet Commission on dementia, pulling together studies on risk factors, their impact and how by targeting those factors, you could minimise the chances of the condition developing. I found that much of this research was done in higher-income countries and focused on the white population. The same was true for the genetics of dementia – it’s considered standard and acceptable procedure to have as homogenous a population as possible for your study. This sparked my interest in whether dementia risk factors are the same in all of these ethnic groups. Do they have the same impact and are there any genetic differences?

I discovered that in the more affluent, educated people that I’ve studied, the impact of risk factors such as diabetes and high blood pressure is the same across ethnic groups. However, when looking at primary care data, the impact of these risk factors seems to differ across ethnic groups – they are much more common in south Asian and Black populations compared to the white population. The potential to prevent dementia may be higher in these groups simply because they have more risk factors. Equally, being more proactive about managing and treating risk factors could reduce the chances of developing dementia further in these groups. Meanwhile, from a genetics perspective, my results indicate that the methods we use to measure genetic risk and predict dementia don’t perform as well in minority-ethnic groups as they do in the white population. There’s no reason to exclude minority-ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies.

“There’s no reason to exclude minority- ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies”
“There’s no reason to exclude minority- ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies”
“There’s no reason to exclude minority- ethnic groups; indeed, we should be actively recruiting them to prevention and treatment studies”

My research has also shown that when diagnosed, people from minority-ethnic groups were at a more severe stage of the illness but were younger. This indicates that they have an increased risk of and propensity for dementia, which means that perhaps they’re getting it at a slightly younger age. There is also a delay in coming forward, so by the time they’re seen, they’re at a more severe stage. There may be reluctance for relatives to seek help because of stigma or because getting external help rather than supporting them yourself is seen as a failing. Within the healthcare system, too, memory problems can still be seen as part of normal ageing and not something to seek help about. We also know that the tools used to diagnose dementia in memory services are geared towards the white population, the more educated and people for whom English is their first language.

Diversity needs to be an inherent part of everything that we do, but particularly for dementia research, where we know there are so many inequalities. We could have a real impact on the numbers of people developing dementia now – and that has to be better than trying to find a cure later.

Dr Naaheed Mukadam is a Principal Research Fellow at the UCL Division of Psychiatry and an honorary consultant psychiatrist with the UCLH Mental Health Liaison Team.

Photography Suki Dhanda

This article first appeared in issue 8 of Portico magazine, published November 2021.

 

My research has also shown that when diagnosed, people from minority-ethnic groups were at a more severe stage of the illness but were younger. This indicates that they have an increased risk of and propensity for dementia, which means that perhaps they’re getting it at a slightly younger age. There is also a delay in coming forward, so by the time they’re seen, they’re at a more severe stage. There may be reluctance for relatives to seek help because of stigma or because getting external help rather than supporting them yourself is seen as a failing. Within the healthcare system, too, memory problems can still be seen as part of normal ageing and not something to seek help about. We also know that the tools used to diagnose dementia in memory services are geared towards the white population, the more educated and people for whom English is their first language.

Diversity needs to be an inherent part of everything that we do, but particularly for dementia research, where we know there are so many inequalities. We could have a real impact on the numbers of people developing dementia now – and that has to be better than trying to find a cure later.

Dr Naaheed Mukadam is a Principal Research Fellow at the UCL Division of Psychiatry and an honorary consultant psychiatrist with the UCLH Mental Health Liaison Team.

Photography Suki Dhanda

This article first appeared in issue 8 of Portico magazine, published November 2021.

 

My research has also shown that when diagnosed, people from minority-ethnic groups were at a more severe stage of the illness but were younger. This indicates that they have an increased risk of and propensity for dementia, which means that perhaps they’re getting it at a slightly younger age. There is also a delay in coming forward, so by the time they’re seen, they’re at a more severe stage. There may be reluctance for relatives to seek help because of stigma or because getting external help rather than supporting them yourself is seen as a failing. Within the healthcare system, too, memory problems can still be seen as part of normal ageing and not something to seek help about. We also know that the tools used to diagnose dementia in memory services are geared towards the white population, the more educated and people for whom English is their first language.

Diversity needs to be an inherent part of everything that we do, but particularly for dementia research, where we know there are so many inequalities. We could have a real impact on the numbers of people developing dementia now – and that has to be better than trying to find a cure later.

Dr Naaheed Mukadam is a Principal Research Fellow at the UCL Division of Psychiatry and an honorary consultant psychiatrist with the UCLH Mental Health Liaison Team.

Photography Suki Dhanda

This article first appeared in issue 8 of Portico magazine, published November 2021.