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.
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.
‘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, professor of cancer genetics at The Institute of Cancer Research and 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?”’