GAP-Net site, El Faro Health & Therapetuics was featured in AARP on the work they are doing to bring Alzheimer’s research to the Latino and Starr County communities.
On a gloomy mid-November morning in 2021, Jessica Cantú stood in the parking lot outside a health center in the rural border community of Starr County, Texas, and felt something pulling her back to her hometown.?
The 45-year-old nurse practitioner was there to witness the grand opening of an Alzheimer’s research clinic called El Faro Health & Therapeutics Center — the first in Starr County and the only one for many miles. Seven months before, Cantú had lost her father to the memory-robbing disorder.
“I just felt his presence all around me,” recalls Cantú, who at the time was living and working about an hour away in the city of Edinburg.
Not two weeks later, she joined the team at El Faro, opened by Antonio Falcon, a trusted family medicine doctor of four decades in Rio Grande City, and his son, James, a former U.S. Army emergency medicine physician. The purpose of the clinic, James Falcon says, is to provide more opportunities for Latinos to participate in Alzheimer’s disease research.
Latinos in the U.S. are one and a half times more likely than their white counterparts to develop Alzheimer’s disease or a related dementia. Yet they account for only a sliver of clinical trial participants — some studies estimate 1 to 2 percent — often due to limited awareness of research opportunities.
Meanwhile, Latinos are expected to face the steepest increase in dementia cases of any racial or ethnic group in the country. The Centers for Disease Control and Prevention predicts there will be 3.2 million Latinos living with dementia by 2060.
Starr County is all too familiar with the reality of these statistics. The predominately Hispanic community of about 6?6,000, which bleeds into the Texas-Mexico border, has one of the country’s highest reported rates of Alzheimer’s disease, the most common type of dementia. More than 23 percent of Medicare beneficiaries in Starr County have been diagnosed, federal data shows.
Alzheimer’s prevalence in neighboring counties is also high compared with the national average of about 11 percent. And until now, few residents have been given the opportunity to participate in dementia research, most of which is run out of distant hospitals and universities.
“Before [El Faro opened], you would go to the doctor and they’d say, ‘I’m sorry; it’s a memory problem. There’s not much you can do, just go home and be ready, prepare for it.’ And that was it,” Cantú says. “Now, there’s hope for Starr County; there’s hope for the Rio Grande Valley.”
Working with the nonprofit Global Alzheimer’s Platform Foundation, El Faro began enrolling patients in its first clinical trial last winter. The study assesses whether blood and digital biomarker tests (a biomarker is a substance in the body that can point to the presence of a disease) can detect amyloid plaques in the brain, a hallmark of Alzheimer’s disease. The most common ways for doctors to know whether a patient has these sticky protein plaques that disrupt brain function is with a PET scan or a spinal tap, both of which are expensive and invasive.
Experts say more accessible tests are needed that can identify the disease early in its course, perhaps even before symptoms begin. An early diagnosis gives patients and families time to plan and an opportunity to enroll in trials testing potentially lifesaving medicines.
El Faro plans to launch another study before the end of the year with the Davos Alzheimer’s Collaborative, an organization focused on diversifying dementia research in the U.S. and globally. The study will follow Latino families across generations and monitor their health with blood tests and other simple screening tests, some of which have been modified to be more culturally relevant by including words and pictures that better represent our multicultural population. The goal, explains study leader Rhoda Au, is to identify risk factors that may drive dementia in this group and to nail down when these risks kick in.
Hopefully, the results of this study can help to inform whether early drug or lifestyle interventions — say in your 30s, 40s or 50s — can delay the onset of dementia, “or even prevent it, which is ultimately what we’re really hoping to get to,” says Au, the global cohort program director at Davos Alzheimer’s Collaborative and a professor of anatomy and neurobiology at the Boston University Chobanian & Avedisian School of Medicine.
Dementia doesn’t look the same in everyone
Did you know?
About 6 million Americans have dementia caused by Alzheimer’s, which is the most common type of dementia. Other types include frontotemporal dementia, Lewy body dementia and vascular dementia. It’s possible to have more than one type of dementia, which can make an accurate diagnosis difficult.
About eight hours north of Rio Grande City, in Fort Worth, Texas, researcher Sid O’Bryant is working to find answers that can explain why Mexican Americans, the largest group of Latinos in the U.S., are at a higher risk for Alzheimer’s disease and related dementias than their white counterparts, and why they can experience symptoms years — sometimes a decade — before their peers. Is the reason biological? Or are there other factors at play?
O’Bryant’s federally funded research has also expanded to study the risks related to Black Americans, who are twice as likely as white adults to face an Alzheimer’s diagnosis. “There are definitely differences between racial and ethnic groups with regards to Alzheimer’s and dementia. And that’s what we’re trying to understand,” says O’Bryant, the executive director of the Institute for Translational Research at the University of North Texas Health Science Center.
He hopes any clues he finds will help guide the development of treatments — possibly even tailored therapies — that are effective in all populations, not just the white patients who have historically made up the majority of study participants. What’s been discovered could do just that.
For example, research from O’Bryant’s Health and Aging Brain Study has found that the strongest genetic risk factor for Alzheimer’s disease, a gene known as APOE4, is less common among Mexican Americans. Other studies have shown it is less common among Hispanics more broadly, and even when it is present, it may not carry the same risks that it does for non-Hispanic whites.
Another difference noted by O’Bryant and other researchers in the field: Amyloid plaques — those protein clumps that clog up the brain and are a defining feature of Alzheimer’s — appear less often on imaging scans in Hispanics than in non-Hispanic whites who have dementia or mild cognitive impairment (a precursor to Alzheimer’s disease). A study published Oct. 3 in the journal JAMA Neurology found this is also the case among other minority groups, including Black and Asian patients.
O’Bryant’s hunch — and plenty of experts in the field agree — is that factors beyond the traditional markers of Alzheimer’s may contribute to the higher rate of dementia among Latinos. “There are multiple ways for the brain to be impacted that will cause cognitive changes,” he says. For at least some people in the Latino population, “it looks like it’s probably other pathways.”
Homing in on the heart
Many Alzheimer’s researchers have turned their focus away from the brain to home in on the heart. That’s because accumulating research shows that risk factors for heart disease, such as diabetes and high blood pressure, also affect the brain. And in the Latino population, their presence is prevalent.
Hispanic adults in the U.S. are 70 percent more likely than non-Hispanic white adults to be diagnosed with diabetes, according to federal statistics. They’re also more likely to have uncontrolled high blood pressure.
“Anything that’s got to do with cardiovascular risk is going to impact risk for dementia, and I think that’s especially prominent in the Latino population,” says Eliezer Masliah, M.D., director of the Division of Neuroscience at the National Institute on Aging.
Hector M. González has noted evidence of this among the large and ethnically diverse Latino population he and other researchers around the U.S. are following for the Study of Latinos-Investigation of Neurocognitive Aging, also known as SOL-INCA. “We’re looking systemically at health, not just the neck up,” says González, a professor of neurosciences at the University of California San Diego School of Medicine.
The research published from González and his colleagues suggests that having multiple cardiovascular risk factors in midlife — high blood pressure, high blood sugar and high cholesterol, for example — is strongly associated with cognitive decline in Latino older adults.
Brain imaging has also revealed evidence of “silent strokes” in some study participants. These are strokes that can happen without symptoms but still cause damage in the brain — and uncontrolled high blood pressure is a leading risk factor for them, González points out.
Diversifying dementia research
Alzheimer’s Disease and Latinos
- Researchers estimate that 12 to 14 percent of Hispanic adults in the U.S. ages 65 and older have Alzheimer’s, compared with 10 percent of non-Hispanic white adults in the same age range.
- By 2060, cases among Hispanics will increase seven times over today’s estimates.
- Across all races and ethnicities, women are nearly two times more likely to be affected by Alzheimer’s than men.
Source: Centers for Disease Control and Prevention, Alzheimer’s Association
Beyond genes and biomarkers, researchers are studying the impact that air pollution, sleep habits and even loneliness can have on the development of dementia in Latinos. Experts in the field hope that pinning down all of the relevant risk factors can help physicians prescribe prevention and treatment plans that could be customized to each individual patient.
This so-called precision medicine approach may include drug therapies to break up amyloid when it’s present or to reduce neuroinflammation. It may also involve tackling contributing diseases, such as diabetes and hypertension, in populations where there’s a strong dementia link.
“We’re not there yet, but the long-term goal is to have population-informed precision medicine,” O’Bryant says.
In the meantime, efforts to increase dementia research among Latinos are progressing. Researchers at the University of California San Diego School of Medicine received a $24.5 million federal grant to continue SOL-INCA, the large project that follows Latinos from different ethnicities. O’Bryant and his team were just awarded nearly $150 million to expand their research in Alzheimer’s disease disparities among Mexican Americans, and other research centers in predominately Hispanic areas are starting similar studies.
“I think one thing we have learned is that Alzheimer’s disease is not the same in all the populations,” Masliah says. And gaining a better understanding of how the disease takes hold in different groups could help everyone. “We’re all in this boat together,” he says.
Hand-in-hand with an energized focus on the research is a push to recruit more Latinos to participate in these studies. For this to be successful, scientists are looking beyond the traditional research model.
“We’ve been doing studies at universities and giant medical campuses, and consequently, what we’re doing is we’re missing a very big portion of the population. Because there’s lots and lots of people in this country that can’t get to those regions, but they also have very high risk,” says Au, with the Davos Alzheimer’s Collaborative. “And whatever is driving their higher risk, we need to actually find out. And the only way you’re going to find out is [by being] inclusive.”
In Starr County, Texas, word-of-mouth has brought many residents into El Faro, the research site started by the father-son team. People hear about it from friends and neighbors, even from other doctors in town.
Although plenty of folks are excited about the new clinic, which has a more homelike ambiance than a hospital, El Faro’s site director Cantú says she still sees hesitation among some when it comes to participating in medical research.
“I always just emphasize that, as minorities, we need to be part of research to be able to find a cure or at least a new medication that will be affordable for our Alzheimer’s and dementia patients,” Cantú says. “You may be 70, 80 years old, but one day your DNA is going to help someone else. One day your DNA may help your child, it may help my child. It’ll help someone else, and that’s what we really want to do here.”
James Falcon expects the multigenerational study El Faro is about to start with Davos Alzheimer’s Collaborative researcher Au will attract even more people, since the requirements participants need to meet are minimal, setting the trial apart from many others that often have lengthy lists of inclusion and exclusion criteria. Participants just need to be 18 or older.
“It gives us something to offer for everybody that walks through that door,” Falcon says. “Not only does it help increase the minority population in these studies, but it helps our local community to get involved to be a part of the solution.”
For Cantú, the opportunity to welcome new research participants to El Faro is not just fulfilling on a professional level but on a personal one, as she strives to keep her father’s legacy alive.
“He was just always helping others, so how can I go on in life not helping others the way he did? And in his honor,” she says. “We want to be a beacon of light in the darkness that is Alzheimer’s.”
?Large Colombian Family? May Hold Clues for Alzheimer’s Cure
Francisco Lopera, M.D., a neurologist at the University of Antioquia in Medell?ín, Colombia, has for decades been following an extended family that has a rare genetic mutation that causes early-onset Alzheimer’s, a form of the disease in which symptoms set in before the age of 65.
This extended family of roughly 5,000 people is at the center of research trials hoping to unlock the mystery of Alzheimer’s. In a population that’s all but destined to get the disease, can intervening early with a breakthrough drug or other therapy prevent Alzheimer’s from occurring?
Researchers from the Banner Alzheimer’s Institute in Phoenix and the University of Antioquia in Colombia recently reported that the investigational medicine crenezumab — a drug that goes after amyloid plaques in the brain, one of the hallmarks of Alzheimer’s disease — failed to slow cognitive decline in people with the genetic mutation. Still, experts hope they’ll learn more about the disease — and how to stop it — by continuing to study this lineage.
?Want to Get Involved?
- If you’re interested in participating in the Health and Aging Brain Study at the University of North Texas Health Science Center, call 817-735-2963.
- To learn how anyone 18 and up can participate in the multigenerational research study at El Faro Health & Therapeutics, email inquiry@DavosAlzheimersCollaborative.org.
- Learn more about open studies at El Faro Health & Therapeutics and other Global Alzheimer’s Platform Foundation sites here or email volunteer@globalalzplatform.org.
- Learn more about participating in an Alzheimer’s clinical trial and find one near you at alzheimers.gov.?
Originally posted by AARP on November 16, 2022.