A 'novel way of doing it': Research effort addresses Alzheimer's knowledge gap in AAPI communities

The clock drawing test is one of the most common screening tools for early Alzheimer’s disease. The patient is instructed to draw a clock face with the hands placed at a designated time; their screener scores the drawing based on whether they drew a closed circle, included all the numbers, spaced them proportionally and positioned the hands correctly. The lower the score, the more likely the patient has Alzheimer’s.

But what if you don’t have much experience with clocks? Such is the case for many people on the Samoan Islands, where Brigham Young University researcher Justina Tavana, Ph.D.—a Samoan herself—is building out a first-of-its-kind screening program for Alzheimer’s. Between sites in Samoa and Utah, her research has recruited more than 900 participants so far.

“There’s so much valuable information that comes from the clock drawing task, but in the demographic of the population that I work in, they haven’t had a formal education,” Tavana explained in an interview with Fierce Biotech Research. “They wouldn’t fail because they have had cognitive impairment, but because they’re not familiar with a clock.”

Tavana’s work is part of a larger, National Institutes of Health (NIH)-backed initiative called Natives Engaged in Alzheimer's Research, or NEAR. Spearheaded by Washington State University, the program is conducting clinical trials that will help understand and mitigate Alzheimer’s in the native North American and Pacific Islander populations who have been left out of past research efforts—communities that now face a dramatic rise in the condition as their life expectancies lengthen. The effort hinges on scientists like Tavana who are from and speak the language of those populations, qualifying them to develop culturally sensitive tests that give accurate diagnoses.

“The trials that are being conducted here are going to very clearly and in a targeted way answer questions about whether or not these interventions are efficacious and acceptable to native populations,” Kristina McLinden, Ph.D., who directs Alzheimer’s clinical trials programs at the NIH’s National Institute on Aging, told Fierce Biotech Research in an interview. “I think this is a really novel way of doing it.”

Visible blind spots

Historically, white participants and scientists have dominated every stage of Alzheimer’s research—from diagnostics development to genetic screenings to clinical trials for new drugs—despite evidence that the disease may occur more frequently in communities of color. The host of reasons for the gap include a long history of bias by the U.S. medical establishment and racism within academia, which locked out many would-be non-white researchers. That has made it virtually impossible to get a good read on just how many people from some racial and ethnic minority backgrounds have the disease, much less treat them.

“This is a really important time now, because Alzheimer’s and other dementia research has taken off and has increased funding at the federal level,” Carl Hill, Ph.D., chief diversity, equity and inclusion officer for the Alzheimer’s Association, said in an interview with Fierce Biotech Research. “It’s critical that participants in clinical trials are representative of the broader population that’s affected by or at risk for Alzheimer’s and other forms of dementia.”

While the figures may not show up in the database, the problem is hardly invisible. Anecdotally, Alzheimer’s is indeed prevalent among Samoans, Tavana said, many of whom also have conditions like Type 2 diabetes and hypertension that may predispose them to the disease. Elders in her own family have suffered from memory loss and cognitive decline, she said, and conversations with others in the community made it clear that they were far from alone.

“As I’ve talked to participants and done these assessments, so many can recall people who had these symptoms. They just didn’t know what to call it,” Tavana said. “There isn’t even a specific word [in the Samoan or Tongan languages] for Alzheimer’s, but it looks exactly the same.”

To cast light on the blind spots, the NEAR project has set up a network of eight centers in areas with large populations of Native Americans, Hawaiians and Pacific Islanders, all led by researchers from the cultures they serve. In addition to developing and conducting cognitive assessments at “brain train” events—recruitment workshops where elders are also educated about brain health—scientists at the sites collect blood and saliva samples for DNA analysis.

All of the components are crucial to the ultimate goal of treating Alzheimer’s in these underserved populations, McLinden said.

“We need to know the likelihood, the clinical prevalence, the genetic risk and how biomarkers vary among those groups,” she explained. “Then we also need to do a better job of recruiting them to our clinical trials to be able to figure out what interventions work in different populations.”

Translating tests

The first step to treating patients is proper diagnosis. For Tavana’s research participants in the Samoan community, that meant scrapping the clock drawing test in favor of something else: A stick placement task, where participants are instructed to position sticks in different shapes. Her team adapted the test from a similar assessment developed by researchers in Brazil, which may have been based on one first created for Yoruba populations by Nigerian researchers.

“These researchers have been doing this for a really long time, so the tests they've developed are very accurate,” Tavana said. “I haven’t had to recreate anything, which has been really nice—just some tweaks here and there.”

The scientists also had to adapt other aspects of the tests to accommodate linguistics. Typically, dementia evaluations call for assessing orientation to time, meaning the participant is asked to tell the evaluator the current day and date. But in the Samoan language, the word for “date” and “day” is the same.

“When doing these assessments, you try to have the least amount of confusion, and you want the process to go as smoothly as possible,” Tavana said. “We realized quickly that this would be a problem.”

To get around the issue, Tavana changed the “date” and “day” question into separate questions—one about the day of the week, another about the day of the month and a third about the day of the year.

“It seems like a pretty simple adaptation, but it’s crucial to ensure that we accurately assess orientation of time in the community,” she said. The scenario underscores the importance of accommodating cultural and language differences in adapting Alzheimer’s tests for diverse communities, she added.

“If I had just translated the questions directly and had someone read them—and if I didn’t have the cultural and language background—I wouldn’t have known that it would be a problem,” she said.

Trials and treatment for all

More genetic samples and better tests are just the start of the effort to bring Alzheimer’s patients from native populations into the fold. The NEAR project also includes coming up with initiatives to recruit them into clinical trials for drug treatments.

“I think the worst thing to happen is for there to be a new treatment and to have someone who’s from a minority group ask, ‘Was this done in people who look like me? Do we know that it works?’ and to not have an answer to that,” McLinden said. “That’s what we’re really working towards at NIA, and those are some of the gaps that we’re trying to address.”

Doing so will require overcoming skepticism toward Western medicine. Some Samoans, for instance, are still hesitant toward interventions for which there’s already plenty of scientific evidence and lots of need, Tavana said.

“Western medicine is still kind of new and scary, so people don’t always seek the help that they need medically,” she explained. They might be even less likely to try brand-new treatments like, say, Biogen and Eisai’s anti-amyloid antibody lecanemab, when it’s available to them.

That makes it all the more essential that the researchers studying native populations come from them themselves, McLinden said. Their leadership is vital at every level, from designing trials to conducting them.

“Being from that background engenders a likely sense of trust where participants feel that the researcher understands them,” she explained. “That can overcome some historical mistrust of trials and of clinical research overall.”

Hill shared McLinden’s view and added that recruitment for Alzheimer’s from underserved communities should begin early to improve engagement. The more culturally and language-competent researchers and physicians there are in the field, the more likely patients from their background will be to trust them—leading to earlier diagnoses, which can improve treatment outcomes.

“If people feel like they will be treated unfairly because of their race or ethnicity, they’re less likely to go to the doctor,” Hill said. “We’ve got to think critically about partnering with organizations that allow us to recruit or begin to train, in this case, Asian American-Pacific Islanders in high school and college so we have more neurologists and dementia care specialists that represent and reflect the communities of the people we’d like to engage.”

Moving forward

Tavana is currently working on manuscripts that will describe her methods and their effectiveness in assessing Alzheimer’s prevalence in Samoans and Tongans. She’ll present them at the upcoming Alzheimer’s Association International Conference, which runs from July 16 through July 20 in the Netherlands. She’ll also be taking part in the first International Indigenous Dementia Research Network conference, set to be held in Hawaii this November.

“We’ll have indigenous dementia researchers all over the world coming together,” Tavana said. “That’s big for us.”

As for her work with NEAR, there’s much more to do. While 900 participants is a good start, the researchers need thousands if they want to draw robust conclusions, Tavana said. On top of that, she would like to expand linguistic adaptations of dementia diagnostic tools to other Pacific Islander languages. She and her colleagues are working on getting more grants to fund that work, she said.

“I really think this will help us understand how Alzheimer’s affects our communities and how to best diagnose and treat it,” Tavana said.

Learning about Alzheimer’s through members of her own community—many of whom she knows personally—has been both satisfying and emotionally taxing, Tavana said. Though she has always known Pacific Islanders had tight-knit communities, she has been surprised at how quickly word of her work on the islands and with Utah’s Pacific Islander population has spread. People in other states have requested her help in developing programs for Pacific Islander communities there, too.

“I thought I knew how close the community was, but this was another level of support that I didn’t realize was there,” Tavana said. “It’s been amazing.”