Over the past decade, Jessica Guthrie has created systems and routines that include bright sticky notes and weeks worth of meal prep. Her playbook evolves with each chapter of her mom’s disease. There are personality shifts, paranoia, and talking to unknown people in the mirror. Then, the falls that result in calls to the fire department and physical pain that requires emergency room visits.

Guthrie’s mom, Constance, is among the more than 20% of Black Americans over the age of 70 who have Alzheimer’s disease or other forms of dementia. That’s about twice the rate of white Americans and somewhat higher than the 14% of Hispanics who live with the disease.

Two new drugs — Leqembi and donanemab — are the first ever to be proven to slow the progression of the disease. They work by targeting and removing a protein, called amyloid, which is one of two toxic proteins that deteriorate certain regions of the brain.

It’s the kind of news that initially excites Guthrie, who became her mother’s caregiver after her Alzheimer’s diagnosis about a decade ago. But the buzz was quickly killed.

“Oh hell,” she said after doing more research, “well this isn’t for us.”

Black Americans were screened out of the clinical trials for those drugs at a higher rate, Reuters reported, because they didn’t have enough amyloid in their brains to qualify. Prospective Hispanic volunteers were also excluded at a higher rate for the same reason.

Eisai, the biotech company that developed the drug, said about half of Black volunteers did not meet the amyloid threshold requirement, compared to 22% of white people. That meant the U.S. trials had 43 Black participants out of 947, which is less than 5%. It’s a significant underrepresentation of Black Americans, especially considering the disproportionately high rates of Alzheimer’s within the community.

The discrepancy is frustrating Black researchers, patients, and caregivers.

Even though her mom’s disease is too advanced for such drugs, Guthrie worries about the small numbers.

“I wouldn’t trust that,” she said. If she could rewind 10 years and put her mom on the treatment, she absolutely would not, she said. Guthrie would prefer to be more intentional in other ways than risk losing her mother earlier, given the lack of representation of people who look like them in the trials.

It disappoints her that the recent medical advances in treating the disease may not be as effective for Black patients, and that they're being excluded from clinical trials.

Are researchers asking the right questions?

“If Black Americans don’t have enough amyloid to be in the trial, but they have a higher risk of the disease, shouldn’t we try to understand what is causing their disease and target whatever that is for clinical trials?” said Dr. Lisa Barnes, a cognitive neuropsychologist at Rush University Medical Center’s Alzheimer’s Disease Center. “As a field, we need to figure out how to include people who are supposedly at higher risk of the disease.”

It’s well-established that Black Americans are less likely to be included in clinical trials generally, and especially in clinical trials for Alzheimer’s disease, according to Barnes.

The shattered relationship between health care institutions and Black communities, due to historic and present medical racism and abuse, makes it difficult to recruit willing volunteers. Strict criteria for participating, like not including those with preexisting conditions, can lead to ineligibility. And, a lot of trials target specific pathologies like amyloid that may not be present at the required level in Black Americans, Barnes said.

Additionally, “there are hidden costs related to participation that might link to transportation or taking time off from work,” said Carl V. Hill, chief diversity, equity and inclusion officer for the Alzheimer's Association. He said awareness that pharmaceutical companies are looking for volunteers is also a barrier. Hill has discussions with community members, often dispelling myths. He explains the protections that are in place following the Tuskegee experiment, and invites researchers into those conversations as well.

Still, researchers and pharmaceutical companies need to be held to a much higher standard, Hill said.

Why Black Americans have higher rates of Alzheimer’s is not totally clear. Researchers don’t know enough about dementia to be able to say that its causes are different across race. There’s a wide range of risk factors, said Barnes, but rarely do they predict Alzheimer’s in Black folks and not white folks.

“We certainly need to know more,” Hill said. But overall, “what’s good for the heart is good for the brain.”

That means a healthy diet, good exercise, access to quality health care, education, and housing all positively affect brain health over the course of a lifetime.

The high cost of care

When Ty Lewis’s mom experiences intense Alzheimer’s symptoms, her two teen daughters cut on the music and dance for their grandmother. Lewis’ heart melts when the youngest sings to Getrude. And, again, when the oldest dances. Caregiving is building their character, the Los Angeles resident said.

Getrude is approaching the final stages of the disease, but holding steady.

“You are watching your loved one decline before your eyes,” Lewis said. She wishes more people, including doctors, understood what dementia really is. There’s memory loss mixed with hallucinations, mood swings, and eventually the inability to do daily activities like brushing teeth and fixing a plate of food.

Lewis has been asked many times by researchers if she has any Black friends who might have family members interested in participating, but she’s frustrated that of the nearly 15 clinical trial inquiries she’s responded to, her mother hasn’t qualified for any.

“It’s a quick exclusion,” she said. “How can we move forward and have an even playing field when we’re already counted out in the beginning?”

After FDA approval, Leqembi is hitting the market at $26,500 per year for patients with early-stage Alzheimer’s. Medicare said it would cover 80% of that cost. It’s one expense on top of the mountain of hidden costs, including the emotional toll, weighing on caregivers.

When Lewis sat down to run her expenses, she realized the care amounted to $48,000 in just nine months. If she were to consider placing her mother in a care facility, the cost could top $14,000 a month. “I don’t have that,” she said.

Guthrie pays for medical bills, doctors visits, clothes, and food. If she were to use a care agency, that could reach as high as $32 an hour, amounting to $40,000 a year.

“My financial picture looks very different from my peers,” the 35-year-old said.

She’s been renovating her basement in Fredericksburg, Virginia, for the past year and a half so her mother, Constance, can go outside again. It’s something she used to do every hour. Lately, she’s been stuck upstairs.

Guthrie prepared as best she could for the cognitive changes brought about by Alzheimer’s. Still, “absolutely nothing prepared me for the physical changes,” she said. Moving wheelchairs and hospital-style beds through the house has been a challenge.

“It’s bigger than just a loss of memory.” She wants her mom to be able to see her flowers and sit on the porch like she used to. She’s committed to finding joy in the small moments.

Correction: More than 20% of Black Americans over age 70 have Alzheimer’s disease. A previous version of this story misstated the scope of the disease.

Margo Snipe is a health reporter at Worldacad. Twitter @margoasnipe