A pioneering study is underway to better understand the effects of Alzheimer’s disease and dementia in Native Hawaiian, Pacific Islander and other Indigenous populations.
Alzheimer’s, a progressive brain disease that results in memory loss and the eventual inability to carry out daily activities, affects an estimated 6.7 million older Americans.
Scientists do not yet fully understand the cause for Alzheimer’s, nor all of the risk factors, and are examining whether education, diet, environment or genetics play a role.
At the same time, decades of Alzheimer’s research and data have included primarily non-Indigenous populations, leaving a gap in knowledge.
The National Institute on Aging has awarded nearly $15 million to a multiyear project — Natives Engaged in Alzheimer’s Research — to close that gap by expanding research on Native Hawaiian Pacific Islanders, or NHPIs, American Indians and Alaska Natives.
The first project of its kind brings 11 tribes, six academic and research institutions, including Brigham Young University and the University of Hawaii, seven urban Indian and five NHPI community groups together to research Alzheimer’s and dementia in underrepresented populations.
“Many researchers suspect that the rates are higher in our populations, but the populations are so understudied that it’s really difficult to get compelling and clean data about those rates,” said project co-leader John “Keoni” Kauwe, president of BYU-Hawaii.
It is well established that rates of obesity, Type 2 diabetes and other metabolic diseases are higher in NHPI populations, according to Kauwe, which can predispose them to risk of Alzheimer’s and other types of dementia.
“That’s actually part of the reason the study is so important,” said Kauwe, also a biology professor. “It’s really the first focused initiative to educate, create research and medical participation, and increase the assessment of dementia in Native Hawaiian Pacific Islanders.”
The project will establish tools to properly assess dementia in these populations, he said, “so we know the extent of the problem, and so we can do a better job of helping caregivers and family members deal with disease better.”
What is unique about the project is that leaders and researchers themselves are part of the Indigenous communities being studied and care deeply, he said.
“We’re helping each other, our communities, in the way you would help your own family,” he said.
The project is led by Kauwe at BYU, along with Dr. Dedra Buchwald, a professor at Washington State University’s Elson S. Floyd College of Medicine, and Dr. James Galvin, professor of neurology and director of the Comprehensive Center for Brain Health at the University of Miami.
Speaking the language
Some reasons for the underrepresentation of NHPIs in Alzheimer’s research include language and cultural barriers, according to Kauwe, which resulted in lack of outreach and communication.
It has, for instance, been difficult for doctors or licensed professionals to properly diagnose Alzheimer’s in these communities without culturally relevant tests.
A team from BYU has made inroads by adapting the tests, starting with the translation of information and materials into Samoan and Tongan.
Justina Tavana, a certified dementia practitioner and BYU doctoral student fluent in Samoan and Tongan, said this made a huge difference.
“Now they can understand, read and comprehend what it is that we’re doing,” she said, “and to have researchers who can answer any questions in their language has been so important for them.”
She noted, for instance, that the word for day and date in Samoan and Tongan are the same, and that to avoid confusion, forms were adapted to specifically say day of the week and day of the month.
It may be a simple adaptation, but it results in more accuracy, she said.
Tavana is using the adapted tests at “brain train” community events to provide outreach and collect data from Pacific Islanders.
She has traveled as far as Utah and American Samoa, but has also knocked on doors on Oahu’s North Shore.
Establishing trust
Through word of mouth, people in the community are learning about the events and responding.
While they may not know the disease as Alzheimer’s, she said, many have seen some of these symptoms among family members.
One cultural difference is that the tests — a battery of memory, recognition and thinking tests she conducts for Alzheimer’s which usually take about an hour to complete — take longer in Pacific Islander communities.
“I go into a home and plan for an hour and a half,” she said, “and I’m there for three or four hours (with food). It’s taking longer than expected. But that’s what works for us and if it makes them comfortable, that’s what we’ll do.”
Establishing trust has been vital in efforts to collect DNA samples from individuals ages 50 and older to expand the pool that researchers are able to work with for genetic studies on Alzheimer’s.
Researchers hope to analyze the frequency of the “APOE gene” to better understand if it affects Native Hawaiians and Pacific Islanders at the same rate as more heavily studied populations.
There is also no word for DNA in Samoan or Tongan, so Tavana explains what it is and what researchers plan to do with the samples, and goes through the informed consent form to make sure they understand what they are agreeing to.
Samples are collected via either saliva or blood, and communicating effectively has been important to establishing trust.
Once people understand why researchers want DNA samples, she said, they are more willing to participate and refer others to the project. She has established relationships with families with multiple cases that researchers will be able to focus on.
The number of DNA samples since the project started has grown from a scant 17 to nearly 800 now.
Tavana said the project also has brought Indigenous researchers from New Zealand, Australia and the U.S. together for meetings and collaborations.
In Hawaii, an estimated 29,000 people ages 65 and older are living with Alzheimer’s, according to the Alzheimer’s Association, with 60,000 family caregivers bearing the burden of the disease at an estimated cost of $1.9 billion in unpaid care.
The impact of Alzheimer’s is projected to rise another 20.7% as the aging population grows in 2025, says the nonprofit, resulting in an increased demand for health care.
While the study was launched several years ago, the COVID-19 pandemic slowed some research efforts, with outreach and sample collections beginning only about a year ago.
Funding also went to a study at the University of Hawaii’s John A. Burns School of Medicine that examines whether hula can help prevent or delay dementia, and another that examines the role of sleep disorders in cognition in American Indians.
The ultimate goal of the project, according to Kauwe, is to cure Alzheimer’s disease.
As part of that, researchers hope to make education, diagnosis and caregiver support more accessible to these communities.
On the scientific front, the goal is to develop effective ways to diagnose Alzheimer’s in populations that have been understudied, with aspirations of finding a cure for everybody.
“It’s entirely possible that disease is driven by different genetic changes, potentially in different genes and different biological pathways than we’ve learned about in the broad European American populations that we’ve studied,” Kauwe said, “and that kind of information can completely change the face of how we try to prevent and cure disease. So there’s value in studying every population.”
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June is Alzheimer’s and Brain Awareness Month
>> An estimated 6.7 million Americans ages 65 and older are living with Alzheimer’s.
>> In Hawaii, an estimated 29,000 people ages 65 and older have Alzheimer’s, with the number projected to grow to 35,000 in 2025.
>> In Hawaii, an estimated 60,000 caregivers performed 91 million hours of unpaid care worth $1.9 billion last year.
>> In Hawaii, there were 471 deaths from Alzheimer’s in 2019, a nearly 300% increase from 2000.
>> This year, Alzheimer’s and other types of dementia are expected to cost the nation an estimated $345 billion.
Source: 2023 Alzheimer’s Disease Facts and Figures
