An estimated 400,000 people in New York state have Alzheimer’s, and by 2025 the number is expected to reach 465,000. It is now the ninth most common cause of death in the five boroughs.
Do an Internet image search for the term “Alzheimer’s” and you will see some affecting depictions of the disease. A grandmother peers into a face that dissolves. A man’s brain is cross-sectioned to show the plaque buildup that explains his confused expression. A face without eyes, ears, nose or mouth stares ahead. Hands hold up a cloud of words like memory loss, confusion, dependency. A man stands in front of a clock; its hands move, but he does not. A head vaporizes into puzzle pieces. One woman gazes blankly out a window, and another woman touches her own face in a gesture of vacant despair.
All the images are haunting. And all the skin is white. The reality of Alzheimer’s has a different color scheme.
Black people are about twice as likely as White people to get the disease, and Latino residents are 1.5 times more likely to suffer from it than White people. Besides their higher risks, people of color face additional Alzheimer’s challenges: noted racial disparities in how the disease is detected and how research on it is done.
An estimated 400,000 people in New York state have Alzheimer’s, and by 2025 the number is expected to reach 465,000. In the five boroughs, Alzheimer’s was the 21st leading cause of death in 2000. It is now the ninth most common cause of death. As the stakes around Alzheimer’s get higher, the importance of early detection increases. That means the racial skews in recognizing and treating the disease threaten to deny those benefits to thousands of New Yorkers, and increase the costs born by all taxpayers.
Race, poverty, and risk factors linked
The racial skew in Alzheimer’s could reflect some underlying disposition, just as White people are most commonly those who get cystic fibrosis and Black people are 24 times more likely than White people to have sickle-cell anemia.
It could also reflect the impact of racial inequalities on income, diet, education and other factors, or even the biological damage caused directly by discrimination. As University of Alabama researcher Ian McDonough wrote in a 2017 paper, a “weathering hypothesis” holds that “the cumulative impact of the aforementioned social, physical, and economic adversities faced by African Americans lead to early health deterioration and advanced biological aging.”
Dr. Anafidelia Tavares, senior director of programs at the New York chapter of the Alzheimer’s Association, says a key factor might be the racial skews in who suffers from chronic conditions linked to Alzheimer’s.
“There’s genetics, but genetics is not destiny. So we know that lifestyle factors are an important driver for what we are seeing in Alzheimer’s. We know that folks who have obesity, diabetes and hypertension in later life are at increased risk of developing dementia and we know that African Americans have higher rates of hypertension, obesity and diabetes,” Tavares says.
Many chronic health problems are linked to poverty, and race and poverty are, of course, strongly associated: The Black and Latino poverty rates in New York City are both above 20 percent, while the White rate is 12.2 percent. According to the New York City Department of Health and Mental Hygiene, the Alzheimer’s hospitalization rate in high-poverty neighborhoods is 77 percent higher than in less poor neighborhoods.
No ask, no tell
In addition to being more likely to have Alzheimer’s, Black patients are also more likely to have it diagnosed at a middle or later stage of the disease.
This could be the result of differences in body chemistry: Research in 2019 by the Washington University School of Medicine found that Black individuals generally have lower levels of the proteins that are known markers of the presence of Alzheimer’s—meaning that tests that use those markers need to be calibrated to the patient’s race, or miss catching the disease.
However, Girardin Jean-Louis, a professor of population health and psychiatry at NYU Langone Health, believes the racial skews in how early Alzheimer’s is diagnosed reflect cultural habits.
“From the perspective of the environment, culture and history there are some structures that make it more difficult to detect Alzheimer’s dementia among Black and Brown folk. If Grandpa is beginning to forget things, it’s more of an accepted phenomena in those communities,” he says. “It does not trigger the need for an initial evaluation. They don’t even bring it up at their physical.”
“Grandpa has to be protected. He’s an important member of the family. Yeah, if we realize that Grandpa is maybe having a stroke, having difficulty breathing—yeah, let’s take Grandpa to the ER. Versus Grandpa is now 75, we really should be concerned that maybe he too has Alzheimer’s just like his sister did, just like his mother did.”
Patients are just one part of the equation, says Tavares.
“There’s the piece of, ‘Are the families recognizing the problem?’ And then there’s also, ‘Are the providers recognizing the problem?’ Do they know how to diagnose the disease? Are they administering cognitive assessments when the patient says, ‘I’m noticing something is off,’” she says. Surveys have indicated that many patients and doctors have been waiting for the other to bring up dementia.
“For breast and other cancers, we don’t wait for the patent to bring it up,” Tavares notes. “We just ask that as a routine part of care.”
Right now, treating Alzheimer’s involves medications that might slow the progression of the disease, but cannot stop or reverse it. Scientists are working on drugs that might actually prevent the formation of the plaques and protein tangles through which Alzheimer’s attacks brain tissue. But these trials often have a distinct racial skew. As Washington state researchers reported, Black patients made up just 1.6 percent of those included in a recent trial of the experimental drug solanezumab, and only 6.1 percent of the brain data held in the National Alzheimer’s Coordinating Center’s database came from Black patients.
The problem of racial representation in clinical studies is well-documented, and affects research into many diseases other than Alzheimer’s.
“The problem in terms of clinical trials and clinical studies is very often the entry criteria are created with a very narrow population in mind, and while there isn’t an intent to exclude, it does exclude,” says Dr. Mary Sano, a professor of psychiatry and the director of Alzheimer’s disease research at Mount Sinai School of Medicine. “The burden of participating in research can be highly underestimated.”
For example, many studies require participants to have a study partner who helps get forms signed, makes sure the patient makes it to check-ups, records reactions to medication and other unpaid roles. People of color, says Sano, are more likely “to live with family members who need to work and aren’t available to take them to doctors’ visits or monitor them or spend time online filling out questionnaires.”
Studies might also exclude people with other health conditions, like high cholesterol, to make sure those other factors don’t taint the results. Of course, that means racial groups more prone to such conditions are more likely to be excluded. “It’s not the intention,” Sano says. “It’s just they wanted a nice clean group.”
And even if invited, some patients of color might not be interested in being part of a clinical study or trial. According to a 2014 literature review, research indicates that “past abuses, such as the Tuskegee syphilis study, have soured the relationship between researchers and racial and ethnic minorities.”
What’s more, Sano says, the very underlying conditions that elevate risk for Alzheimer’s disease are likely to dominate patients’ thinking about their own health. “Those groups may worry more about their comorbidities than their cognition,” Sany says. Dementia “is an interesting topic but if diabetes is giving you trouble, you’re probably more worried about that than cognitive losses.”
The cost of delays, the effects of exclusion
The links between race and Alzheimer’s can be complex: While Black people are more likely to have the disease, White people are more likely to die from it—although mortality data might mask fatalities where Alzheimer’s was a prime contributing factor but some other illness, like diabetes or heart disease, got the blame.
For all Alzheimer’s patients, getting treatment started early can delay the most severe phases of dementia, increase patients’ quality of life and lighten the emotional, physical and financial blow to caretakers. It also gives families more time to plan for how to handle the more advanced stages of the disease, and it can reduce the costs to society for caring for people with profound dementia.
When a diagnosis is delayed, as it is for many Black people with Alzheimer’s, “that means that the long-term care planning that needs to happen doesn’t happen and so families are reacting in crisis mode, and so families aren’t able to do all the things they need to do to get into a nursing home or pay for a home health aide, or think about the trials they want to participate in,” says Tavares. “They don’t have a chance to discuss the values and the goals of the person who has dementia, and how they would want to live. Many times people are just making guesses. That is a detriment to our African American families.”
The impact of poor racial representation in clinical trials and studies is felt when those treatments go from research experiments to standard treatment. “A drug may not serve you because it doesn’t serve your biology,” Sano says. For instance, an Alzheimer’s trial might concentrate on a particular way that the disease actually affects brain function. “It might be that some cognitive change is really driven more by a different biology, vascular or neurological, and if you are in a population that has that vascular or neurological path, you’re not going to be represented in that population and we won’t really know if [the drug] offers any help for you.”
Hoping to improve the odds for early detection, Alzheimer’s advocates have been working to improve the way doctors handle patients at risk for the disease: The Alzheimer’s Association even offers videos demonstrating how a physician should do a cognitive assessment.
The association is also fighting for policy at the federal and state level that facilitates community outreach and cognitive assessments. In Washington, the push is for the Trust for America’s Health Improving Social Determinants of Health Act, which would let the Centers for Disease Control and Prevention grant $50 million a year to state and local health agencies to investigate how inequities shape patient experiences. The fight in Albany is over preserving the Alzheimer’s Disease Caregiver Support Initiative, which funds both community groups and hospitals for outreach and screening.
Much of the work of reducing racial disparities around Alzheimer’s involves centering the patient. A project Sano is heading called RADAR-CLD (for Recruitment Accelerator for Diversity in Aging Research, Cognitive Loss and Dementia) focuses on getting the voices of stakeholders into the planning of clinical research.
“We need to ask the scientific questions that are going to matter to people,” she says.“We’re asking from the beginning all of the right stakeholders, ‘Have I asked a question that matters?’” Beyond the research focus, It’s also about aiming for outcomes that make a study worth people’s time. “If I have to spend an hour a day in an infusion suite and if, for safety reasons, I have to be imaged every couple weeks, how important is that to me if I don’t see a clinical benefit?”
When it comes to detecting the disease, a key to overcoming the reluctance to disclose memory issues, Jean-Louis says, is to create new sentinels in the community who might notice someone who is beginning to forget things, and encourage them to seek help. “Trust is the key factor here,” he says. “If a pastor says, ‘Go get screened,’ everybody gets screened. If a doctor walks in and says, ‘Get screened,’ nobody does.”
Practical barriers remain: One local hospital system told City Limits its efforts to establish an Alzheimer’s outreach program have been delayed by difficulties in finding trained geriatric staff. Yet, thanks to growing evidence that treatment can make a difference in the lives of people with Alzheimer’s, Jean-Louis says the cultural landscape around the disease is changing, albeit slowly.
“People are beginning to realize it’s something they can control,” he says. “It’s something they can do something about.”
City Limits’ Age Justice series explores the issues facing a graying New York. It is supported by the New York Foundation.