Valene Campbell started to have a sinking feeling as she was standing in the security line at the airport. It was fall 2016, and she was headed to London for a birthday celebration. But Campbell’s mom, Patricia, 71 at the time, kept holding up the line. In fact, she seemed strangely confused by the entire process.
When they finally arrived in London, Campbell noticed another alarming change. “My mom is a very neat packer, and a sense of style is everything to her,” says the now 46-year-old author from Toronto. “So when she opened her suitcase and I saw everything in total disarray, I knew what I was witnessing.” A year later, a doctor confirmed what Campbell had suspected: Patricia had Alzheimer’s disease.
Patricia is among the 21.3% of Black Americans 70 and older who are living with Alzheimer’s, the progressive brain disease that robs people of their memory, their ability to take care of themselves, and eventually their lives. But though Alzheimer’s strikes people of all races and backgrounds, it is not an equal-opportunity disease: While Black people are up to twice as likely to develop Alzheimer’s or other forms of dementia as white people, that increased risk doesn’t lead to their getting increased attention from doctors, who might be able to prescribe drugs or recommend lifestyle changes to slow the progression of the disease in its earliest stages. In fact, the opposite happens: Studies show that compared with white people, Black people tend not to be diagnosed with Alzheimer’s until it has progressed much further.
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It was no easy task for Campbell to get a proper diagnosis for her mom. “It took four months to convince her to see a family physician, and then that doctor wasted multiple visits ignoring my dad’s concerns about his wife of 50 years,” says Campbell. “The doctor said her problems were just a normal part of aging.” They finally got a referral to a doctor who diagnosed her mom with Alzheimer’s and put her on meds to slow the progression of the disease and manage her mood. Meanwhile, Campbell tried unsuccessfully to convince her mom to join a clinical trial testing a variation of an Alzheimer’s drug already on the market. “It took so long for my mom to get the support she needed through the health care system,” says Campbell, who is now a full-time caregiver for her parents as well as an advocate for Alzheimer’s disease awareness and has written a children’s book about the disease called The Amazing Zoe and Grandma’s Memory Box. “I wish I had pushed sooner.”
With Black people bearing so much of the burden of Alzheimer’s, questions abound as to why this group is disproportionately impacted by the disease, why their families have to fight so hard for care, and what is being done about the disparity.
Why Black people are at greater risk
The reasons for this are elusive and complex. Health issues play a part: Black people have the highest rates of obesity and hypertension of any ethnicity and are 60% more likely than whites to be diagnosed with diabetes; research shows that those diseases can increase the risk of Alzheimer’s. But there is much more to the puzzle. “When there’s a disparity in health outcomes, researchers have historically tended to resort to intrinsic biological categories. They’ve tended to think, Black people are naturally inclined to get these problems,” says Roy Hamilton, M.D., M.S., a professor of neurology, physical medicine and rehabilitation, and psychiatry at the University of Pennsylvania Perelman School of Medicine. “But it’s inconceivable that one group of individuals, Blacks, would be born with all the features that make them more vulnerable to practically every disease. And if researchers don’t think differently about the problem, how can we expect the public to?”
What’s more, Black people, including African or Caribbean immigrants and African Americans who have been in the U.S. for generations, come from many different backgrounds, which means that blaming everything on genetics is far too simplistic. Race goes beyond the color of someone’s skin, Dr. Hamilton points out: Cultural norms regarding diet, for example, and the impact of discrimination, including chronic stress, are tied to race and can influence a person’s health. “This discrepancy isn’t just about one’s self-reported race—it’s about what people identifying as members of certain races have to endure in life,” says John C. Morris, M.D., a professor of neurology and the director of the Knight Alzheimer Disease Research Center at Washington University in St. Louis. Half of Black people in the U.S., for example, say they have experienced discrimination while trying to get care for someone with Alzheimer’s, and research suggests that Black people often have to present with more severe symptoms or be more persistent to get diagnosed. Experts aren’t sure whether this is due to the fact that Blacks tend to seek treatment later or because of physician bias. Either way, it means the disease has more time to progress before treatment begins, and with Alzheimer’s, the few treatments that are available to slow progression tend to be effective only at the early to middle stages.
Campbell believes race may have been a factor in the frustrating visits with her mother’s first physician. “It would be easy to say that the doctor had a long day and just felt like my mom’s symptoms weren’t serious, but we had several follow-up appointments before we took the necessary steps to move on to someone else,” she says.
Beyond race, social determinants of health (such as possession or lack of health insurance, economic status, quality of education, and environment) play a critical role in the vulnerability of Black people to Alzheimer’s. Research tells us that 55% of Black people believe loss of cognitive abilities is a normal part of aging, and while it indeed may take longer to remember where you left your keys as you age, true loss of memory and decline in the ability to care for yourself is not normal. If you think memory loss is just something that happens, you’ll be less likely to seek help from your doctor when it starts. And even if you decide to seek care, obtaining access to it can be difficult for multiple reasons.
When her mom forgot to pick her up at the airport after she flew in for a visit, Mitzi Miller knew something was wrong. “Nothing short of death would keep my mom from getting me if she said she’d be there,” says Miller, 47, a TV executive in Los Angeles. On that trip, Miller walked into her then 71-year-old mom’s house to find all the windows covered, aluminum foil over the electrical outlets, and a new laptop she’d bought her mom smashed. Her mom’s behavior was paranoid and erratic, so she took her to a doctor. Despite the fact that Miller’s grandmother had Alzheimer’s and the fact that her mother had been a night shift worker for three decades—both of which increase dementia risk—her mom was misdiagnosed as schizophrenic. “They told me I should put her in a mental institution, and they wound up keeping her there for a month,” says Miller.
Issues with access to care and economic status played huge roles in Miller’s mom’s situation. As part of the working middle class, Miller’s mother had Medicare and so couldn’t afford private nurses or world-class health care. And Miller’s job was thousands of miles away from where her mother lived in New York: “I didn’t have the financial freedom to scour every corner of the state for the best facilities and best doctors—the ones who don’t just take any old insurance and who know about all the latest trials,” she says.
A missing piece: clinical trials
One of the most significant aspects of the inequality is that though Black people are disproportionately affected by Alzheimer’s, the number of people of color included in many clinical trials is tiny. So when new drugs to treat Alzheimer’s are introduced, there are no guarantees that they’ll be effective in Black patients. In 2021, the U.S. Food & Drug Administration approved aducanumab, the first new drug in decades that may slow the progression of the disease for people with early Alzheimer’s. But less than 1% of trial participants (0.6%) identified as Black, even though Blacks make up nearly 14% of the U.S. population. “When the number of people of color, and African Americans in particular, is minuscule, how do you know the drug will have the same efficacy for these individuals?” asks Dr. Hamilton.
As Prevention has reported, barriers to inclusion in clinical studies range from distrust of the medical field based on past atrocities such as the Tuskegee Syphilis Study to simple logistical issues (like problems getting to and from medical centers where many trials take place). Many people simply may not know about clinical trials. “Clinical trials were never an option presented to us or part of the conversation,” says Kendra Porter, 46, an image consultant and wardrobe stylist in New York. Porter became concerned about her normally reserved father, who was a preacher, when he grew agitated and short-tempered. Six months after he was diagnosed with Alzheimer’s, Porter started seeing signs in her mother too. Both had hypertension, her father had diabetes, and her mother had a series of strokes. None of the medical professionals her parents saw suggested clinical trials. “If clinical trials had been offered, my mother would’ve probably said yes,” says Porter, whose father passed away three years ago. “She’s willing to try anything and everything under the sun.” The low inclusion and participation rates of Black people in clinical trials and basic scientific research also means we may not have a clear understanding of what causes Alzheimer’s disease in the Black population to begin with. In short, everything we know about it has mostly come from people of European ancestry, who make up the vast majority of trial participants. “Not only do we need diverse representation in clinical trials, but we also need it to make sure that even in basic science studies, what we know about a disease is accurate,” explains Renã A.S. Robinson, Ph.D., a professor of chemistry at Vanderbilt University. For example, one small study showed that one gene variant (APOE4) could triple the risk of Alzheimer’s in white people but had less of an effect in Black people. “We need to understand the biology of the disease itself and what it looks like across different groups and diverse populations,” says Robinson.
Solving the diversity dilemma
Despite this troubling reality, there is encouraging news: Researchers are realizing that the dementia puzzle is missing some critical pieces, and institutions are increasing their efforts to recruit more diverse populations for clinical trials and research. “We’re looking at identifying the asymptomatic phase of Alzheimer’s, and our samples are 18% to 19% African American,” says Dr. Morris of the Knight Alzheimer Disease Research Center at Washington University in St. Louis. But that may not lead to entirely representative outcomes, since study subjects are not the average American. “Most Americans won’t sign up for spinal taps, which our participants do. Most aren’t highly educated, but almost all our participants have a college education,” he says.
Ultimately, to solve the participation problem for all diseases, experts say the medical industry needs to look at how it interacts with communities of color on a larger level. “Until there’s a huge shift of what our experiences look like as African Americans when it comes to our treatment by these institutions, companies, doctors, and the health care system, I think we will continue to see hesitancy when it comes to our participation in health innovations that can benefit us overall,” says Robinson. “I’m excited about doing the work to ensure that we participate in research and that basic science research includes this population.” Valene Campbell is now focused on helping her mom live out the rest of her days safely. “After her test results confirmed my fears, my mind fast-forwarded to the late stages of Alzheimer’s disease, and I was terrified,” Campbell says. “But I knew an accurate diagnosis would empower us to get her the care she needed. I don’t take for granted a single day that she remains with us.”
How to make your Alzheimer’s concerns heard
Getting a diagnosis earlier could slow the progression of the disease. If you feel as if doctors aren’t hearing your concerns about a loved one, experts recommend taking these actions.
Reach out in advance
“Make a list of your questions about your loved one’s memory and contact their health care provider before the appointment to ask the best way to share those details: Email? Patient portal? A physical letter?” suggests Tomeka Norton-Brown, project coordinator for the African-American Alzheimer’s Caregiver Training & Support project at Florida State University College of Medicine. Not only will this increase the likelihood that your concerns will be addressed at the appointment, but your doctor will have time to think about them in advance too.
Be direct
At the appointment, ask for what you want. “Tell them, ‘These are my concerns, and I’d like to place a focus on these during the visit today,” suggests Fayron Epps, Ph.D., an assistant professor at Emory University’s Nell Hodgson Woodruff School of Nursing.
Bring details
The more specific you are, the more info the doctor will have to make a proper diagnosis. “Keep a notepad to jot down dates, times, and circumstances in which you notice memory problems,” suggests Norton-Brown. Instead of simply saying, “Mom is forgetting things all the time,” say, “It took her an hour to drive to my house last week even though I’m only 15 minutes away.”
Request an evaluation
“A basic evaluation includes taking a history of the symptoms or changes; getting blood work, an MRI or a CT of the brain; and neuropsychological testing,” says Carolyn K. Clevenger, D.N.P., director of the Integrated Memory Care clinic at Emory University. This info can help pick up potentially reversible reasons for cognitive problems, including a vitamin deficiency or a brain tumor, and determine the cause of the dementia or what type it is.
Not satisfied? Seek out a new doctor
One specific type of doctor to seek out is a geriatric specialist. “They have that expertise in treating older adults—plus, they should provide longer appointments, less stimulating waiting rooms, and accommodations for the patient as well as a caregiver at the appointment,” says Clevenger.
Your top questions about clinical trials, answered
Whether you are healthy, have been diagnosed with dementia, or are a caregiver, there is a place for you in clinical trials, says Doris Molina-Henry, Ph.D., an assistant professor at the University of Southern California’s Keck School of Medicine Alzheimer’s Therapeutic Research Institute. Here, she answers the top questions she gets from Black people about clinical trials. You can also visit the government’s Alhzeimer’s site to look up trials or the Alzheimer’s Associations Trial Match to find trials that are seeking participants.
“Why should I feel safe given the historical atrocities against Blacks?”
“We’re living in an era of more awareness and more transparency,” explains Molina-Henry. Systems are in place to protect participants in clinical trials. There is a consent process prior to participation that holds the investigative team accountable, explains exactly how your data will be used, mentions the regulatory bodies involved, and more. Also, you have the right to withdraw from a clinical trial at any time.
“Are there risks involved?”
There are always some risks—usually very minor. It’s important to ask about those in advance so you can decide whether the potential benefits to you and the community are worth it before you commit. “Many studies require a thorough screening process to ensure that risks are minimized,” explains Molina-Henry. “But definitely ask the investigative team this question before you agree to a trial.”
“Will I be able to see my results?”
It depends on the study—and how much you want to know. Some trials will do genetic testing that could reveal whether you’re at higher risk of Alzheimer’s as you get older. Others may ask you to take PET scans, which you may be able to share with other doctors on your team.
“Wait, why was I excluded?”
Not everyone who volunteers gets to participate. Molina- Henry notes that people sometimes get upset when they’re turned away but says that this may be good news: “With prevention studies, if someone isn’t included, perhaps they didn’t have the risk level the study aims to address. But if you’re not eligible for one study, you may be eligible for another.”
As the former health director at Family Circle magazine, Lynya developed content to improve the well-being of its 18 million readers. She’s worked as an editor at Glamour, Essence, Seventeen, Heart & Soul, Parenting and more. She also co-edited ESSENCE’s The Black Woman’s Guide To Healthy Living. She received her B.A. in English from Harvard University, integrative health training at Duke, and plenty of life lessons in her hometown of New York City.
