Moise Roche says that if ever he thought he was losing his memory and had dementia, there’s ‘no way’ he’d see a doctor about it.
A researcher in mental health based at University College London, he has published a number of papers in prestigious medical journals focusing on dementia in Black, African and Caribbean (BAC) populations.
While a little over 50 per cent of white people in the UK with dementia are diagnosed and treated, that number is vastly lower among those from ethnic minority groups.
An analysis of 2.5 million UK healthcare records published two years ago in the journal Clinical Epidemiology showed that the majority of black and minority ethnic sufferers in this country don’t receive the medication that could slow the advance of their condition, nor any specialist support services.
The dementia problem reflects a bigger picture of poorer health and poorer healthcare for black, Asian and minority ethnic (BAME) populations
Yet BAC groups have a higher rate of dementia — and earlier onset — than the white population.
No one knows exactly why dementia is less frequently diagnosed in these groups, because there has been very little research into the subject.
In a review of the evidence that has been done, Moise and his co-author, Professor Paul Higgs, identified a number of contributory factors, including social and religious attitudes which mean people delay seeking help because families step in instead, reported the journal The Gerontologist.
Another hurdle Moise has identified, in separate research, is the impact of cultural differences.
Moise Roche says that if ever he thought he was losing his memory and had dementia, there’s ‘no way’ he’d see a doctor about it
‘In the dementia tests, there are standard questions. For example, they ask people how to make sausage and mash, or a cup of tea,’ he told Good Health.
‘Where I come from,’ says Moise, who was born in Guadeloupe in the Caribbean, ‘we pick tea leaves from the garden and boil them — which would probably be the “wrong” answer here.’
In interviews he conducted for his research, he spoke to a nurse who took her mother for a dementia assessment where she was asked to count ‘in reverse’.
‘Her mother didn’t understand. But if they had asked her to count “backwards”, she would have got it.’
This may be something that affects other minority groups, too — and it has significant implications.
The kinds of cognitive tests doctors use to diagnose dementia tend to misdiagnose it in older people and those from ethnic backgrounds, according to U.S. research published in the journal Neurology Clinical Practice in 2018.
The dementia problem reflects a bigger picture of poorer health and poorer healthcare for black, Asian and minority ethnic (BAME) populations.
At the height of the Covid-19 pandemic, Public Health England reported that people of BAME backgrounds who catch the infection are significantly more likely to die, with those of Bangladeshi ethnicity particularly vulnerable, having twice the risk of white people of dying from Covid-19.
At the end of July, the Government announced it is investing millions of pounds on six studies seeking to unravel the link between Covid-19 and race.
But this is just the tip of the iceberg when it comes to the UK’s disparity in healthcare and outcomes (and the lack of research into the causes). Earlier this year, Dr Alastair Noyce, a clinical senior lecturer and an honorary consultant neurologist at Queen Mary University of London, led a major review on ethnic variation in the treatment of the degenerative brain condition Parkinson’s disease, which revealed similar problems.
‘There is evidence that black patients with Parkinson’s disease have higher rates of cognitive decline and progression to dementia than other ethnic groups,’ said the review, published in the Journal of Parkinson’s Disease.
It cited a study in the journal JAMA Neurology which found that while 70 per cent of Parkinson’s patients went on to develop dementia, nearly 80 per cent of those were African-American.
But as Dr Noyce and his co-authors concluded, ‘whether this is due to modifiable vascular risk factors [such as lifestyle], different rates of Alzheimer’s pathology [effects], genetic factors or healthcare inequalities is unknown’.
Another shocking fact: black women are five times more likely than white women to die from complications of pregnancy and childbirth, and their babies are twice as likely to be stillborn (see right).
Meanwhile, inherited life-limiting conditions, such as sickle-cell disease, that predominantly affect babies with an African or Caribbean family background are not diagnosed, or diagnosed late.
The condition, which can lead to excruciating pain, is caused by a gene that affects the red blood cells. In the UK, around 270 babies a year are born with the condition.
‘Pregnant women [at high risk of being a sickle-cell carrier] are meant to be offered pre-natal diagnostic tests before 12 weeks and six days into their pregnancy but they often aren’t,’ says Iyamide Thomas, a spokeswoman for the Sickle Cell Society.
Prompt recognition and treatment can help reduce the severity of symptoms such as pain, and complications including stroke, seizures or speech difficulties, caused by the abnormally shaped sickle cells blocking blood flow in the brain.
Outside of major UK cities, she says BAME patients report that doctors are unfamiliar with the disease and are unwilling to offer patients the morphine they need to control the pain. ‘Hospitals are reluctant to give it to them because they think people are drug addicts,’ she says.
People from some BAME groups are also more likely to have type 2 diabetes or high blood pressure. (Both conditions are known risk factors for severe Covid infections and early death.)
Type 2 is five times more common in those of South Asian background than in white people, according to a University of Surrey study. (They are more likely to develop it at a lower body mass index, though it’s not known why.)
Research from King’s College London found that black people are three times more likely to develop the condition, complications of which include sight loss and the risk of limb amputation.
Another study, by Dr Peter Schofield, a cardiologist also from King’s College London, has shown that high blood pressure on its own — the biggest risk factor for heart disease — is up to four times more common in black people.
Allergies, too, are more common for those from a BAME background, with research showing that one in five black two-year-olds will have a positive skin-prick test for an allergen compared with one in ten white children of the same age.
They are also more likely to have eczema and a wheeze. There are significantly higher rates of asthma among BAME groups too.
These disparities have been highlighted by the Natasha Allergy Research Foundation (set up by the parents of Natasha Ednan-Laperouse who died aged 15 after suffering a severe allergic reaction to food), which says there is ‘very little’ research on what lies behind them, and is calling urgently for Government funding into this.
A further complicating factor is that new drugs are generally tested exclusively on white men. While it’s been known for some time that this means women are often put at a disadvantage as drugs which come to market may not work as well for them, doctors are now realising that people of different ethnic groups are also affected in this way.
Despite the fact that almost half our NHS workers are from ethnic minorities, these groups are generally not included in trials of new drugs which could turn out to be very harmful to them — or simply not work.
For example, it was many years before doctors discovered that people of African ancestry don’t respond as well to a class of blood pressure drugs called ACE inhibitors.
‘We recognise that much more needs to be done to ensure that BAME patients are included in clinical research,’ a spokesman for the Association of the British Pharmaceutical Industry told Good Health.
Yet the problem persists.
One of the most shocking discrepancies is in prostate cancer. It was only five years ago that it was recognised that while the disease affects one in eight white men, that rises to one in four among black Caribbean men. ‘It must be something to do with genetic make-up and environmental factors,’ says Professor Roger Kirby, a London prostate surgeon.
We know vitamin D deficiency is a factor in prostate cancer,’ he says, ‘and it is a more common disease in northern climates further from the Equator.
‘It may be that one issue is vitamin D deficiency because these men are less able to make it from low levels of sunlight than pale-skinned people. But there is no reliable data at the moment.’ That may soon change: the charity Prostate Cancer UK is sponsoring an ambitious five-year study led by Ros Eeles, a professor of cancer genetics at the Royal Marsden Hospital in London.
The project will track 350 men aged 50 to 69 — the men in the study have to have four Afro-Caribbean grandparents — monitoring them for the disease and to see if they are carriers of any of 160 genes believed to be linked to aggressive forms of the cancer.
It is a worryingly similar story with breast cancer, with black women aged under 40 who develop the disease tending to have more aggressive tumours. They are also less likely to be diagnosed and more likely to die, according to a University of Southampton study in 2013, which also found that in this age group only seven out of ten were alive five years after diagnosis, compared with eight out of ten white women.
Baroness Delyth Morgan, chief executive of Breast Cancer Now, acknowledged there is often a problem. She said that non-white women do not attend breast screenings, do not readily go to the doctors with problems and do not feel their views are listened to when they do.
‘It’s critical we see more research into the inequalities associated with breast cancer, including by ethnicity,’ she said. ‘We need to act now to ensure that by 2050, everyone diagnosed with breast cancer will live and live well.’
The British Heart Foundation, while unable to find a spokesman to address the question of how to improve equality of healthcare outcomes or any details of its own efforts to do so, told us: ‘In recent decades, BHF has funded research which has revealed disparities related to socio-economic factors and ethnicity. It’s important we continue to support initiatives which will help uncover and address them. Racism has no place in healthcare.’
Consistently, lack of research is a key issue. Researchers also stress that treating BAME as a homogenous group of patients is also inappropriate.
Funding is a major hurdle, as Dr Noyce explains: ‘We don’t know what the determinants [causes] of disease are in minority groups because we haven’t looked.
‘I’m not in a position to say whether that is racist because I have never experienced racism. We need to ask these questions of patients, clinicians and researchers who are from those under-represented populations.
‘All we know about disease is from white middle-class populations.
‘I have been trying for three years to get a study funded looking at Parkinson’s disease in different ethnic groups in the East End. We had to change the question round in order to make it relevant to the people funding the research. The people funding the research won’t give the money unless they see it relates to them. The people who run medicine are male, pale and stale.’
Moise Roche has reached similar conclusions from his research. ‘There are little grounds for optimism that anything will change,’ he says.
And what’s left behind, his research suggests, is mistrust.
In a study on BAC attitudes to memory loss (published in 2016 in PLOS One), Moise and his co-authors identified ‘a general suspicion about patient confidentiality . . . and whether as a black person that information could be used against you’.
As Moise explains: ‘Being black, people fear they might be automatically diagnosed with a mental health problem, considered mad and then locked up.
‘Lack of knowledge isn’t a problem: people usually know they’re unwell. It’s the worry of telling the doctor: “I’m losing my mind; what’s going to happen?”’
Less likely to get pain relief and at greater risk of dying during labour
By Libby Galvin for the Daily Mail
Black women are five times more likely to die during or shortly after pregnancy than white women.
For mixed race women, the risk is three times that faced by white women; for Asian women, the risk is double that of white women, according to research published last year by the University of Oxford.
Feared she would die: Sharmika Dockery with Riley
This is the alarming picture facing black, Asian or minority ethnic (BAME) women giving birth in the UK today.
While for the vast majority of women, childbirth is a safe experience, for a very small number it is not.
Between 2015 and 2017, 209 women in the UK died during pregnancy or within six weeks of birth — and women from BAME backgrounds are disproportionately represented in that tragic number.
The rate of stillbirths is also higher among BAME mothers: there are 3.74 stillbirths per 1,000 births in the UK each year, but for Asian women the rate is 5.7 and for black women it’s 7.46.
What lies behind these troubling statistics — and personal tragedies — is complex, say experts, taking in a range of pre-existing health conditions as well as socio-economic factors.
However, this is ‘certainly not the full story,’ says Dr Christine Ekechi, a consultant obstetrician and gynaecologist at Imperial College Healthcare NHS Trust.
‘There are women from BAME backgrounds who do not share the characteristics that we would commonly ascribe to a greater risk of mortality,’ she says.
‘In other words, they were born in the UK and English is their first language, they’re not overweight and have no pre-existing conditions. So why are these women still at greater risk?’
She points to prejudice within the healthcare system. Dr Ekechi, who is spokesperson for racial equality at the Royal College of Obstetricians and Gynaecologists, says it is essential the medical profession doesn’t shy away from addressing this.
She suggests the problem is partly structural — such as medical students being taught to spot a lack of oxygen in the mother or the baby by looking for cyanosis, or blue skin. In darker skin tones, this might not be obvious, says Dr Ekechi, so attention must be paid to other symptoms, such as heart rate changes.
But she says prejudice is also manifested at the personal level. A 2016 U.S. study in the Proceedings of The National Academy of Sciences, found that as many as 40 per cent of U.S. medical trainees hold beliefs such as black people are not as sensitive to pain. The study revealed trainees with such opinions were less likely to treat pain in black people appropriately.
‘Looking at data from the U.S. and the UK, black women are less likely to be offered pain relief during labour,’ says Dr Ekechi. Lack of adequate pain relief during labour is a common complaint, with an inquiry this year finding that many women are still denied epidurals, against official guidelines.
But a study in 2013 by the University of Oxford of nearly 25,000 women found that BAME women were less likely to receive not just epidurals but all types of pain relief.
Sharmika Dockery says her increasing pain was ignored for two weeks following the birth of her son, Riley, by an emergency caesarean.
Sent home after two days, Sharmika, 25, a full-time mother from South London says: ‘I was in agony. My scar hurt horribly, and at night I was sweating right through the sheets. I had to change up to five times a night.’
A midwife said ‘it was probably because I was breastfeeding’, while her GP, seeing her struggle to sit properly, dismissed her pain as things just being a bit ‘stuck together’. Eleven days after Riley’s birth, another midwife noted Sharmika’s high temperature and blood pressure and sent her to A&E.
By now passing blood clots and in agony, she was simply given antibiotics and sent home.
Later that evening, her temperature rocketed and she was taken to hospital in an ambulance. The next day Sharmika insisted on further investigations — which revealed part of the placenta had been left behind, causing an infection.
She needed surgery, but on her third day in hospital, this was delayed. Sharmika, then just 17, was told: ‘There’s no rush, your head isn’t falling off!’ Yet, she recalls: ‘I was in so much agony, I was scared I’d die.’
She had the surgery later that day only after a nurse insisted on bringing the surgeon to see her. ‘I feel like that nurse saved my life.’
But in the seven years since, Sharmika has battled crippling pain and has needed repeated surgery.
She’s also suffered permanent nerve damage in her pelvis and legs.
This has affected her bond with Riley. ‘I spent the first years of his life in and out of hospital,’ says Sharmika, who has set up a support group, Beyond Strength, for parents managing long-term health issues.
Although still young, she fears she won’t be able to give Riley a sibling. ‘I’m petrified, to be honest.’
Sandra Igwe’s experience followed a similar pattern. During her first labour, when she was eventually given the epidural she’d ‘begged’ for, it failed. She also suffered a third-degree tear (extending to the back passage) and struggled to walk for weeks.
Sandra, 30, who lives with her husband and daughters, aged four and two, in South London, says the experience made her question having a second child. And the second time, her worst fears were realised. ‘I didn’t get an epidural at all, even though it was in my birth plan and I was begging them for it.’
Sandra, who’s since set up The Motherhood Group, a support network for black mothers, believes ‘every black woman should have an advocate in hospital — or else risk not just being disregarded but dying’.
Dr Ekechi adds: ‘Racism isn’t just shouting racial epithets on the streets. It’s about how we create hierarchies in our heads and in our society about who is important and who isn’t.’