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BYU researcher developing Alzheimer’s tests for Pacific Islanders

Jul 17, 2023, 1:48 PM

PROVO, Utah — A Brigham Young University researcher is studying Alzheimer’s among a group that is rarely included in testing.

KSL’s Tamara Vaifanua tells us why this project hits close to home.

Justina Tavana is a doctorate candidate at BYU who was born and raised in Samoa. She’s one of several scientists developing Alzheimer’s tests for Utah Pacific Islanders in their native languages — building their trust — as they work to address a public health gap.

Tavana knows the impact of Alzheimer’s on families.

“I have a couple aunts. Even just close family friends, we’re such a tight-knit community and we like to take care of our own.”

It’s motivated her to make Alzheimer’s testing more inclusive.

She works with BYU scientists on the Natives Engaged in Alzheimer’s Research project studying Pacific Islanders and Native Americans. Many are Pacific Islanders themselves, including BYU-Hawaii President John “Keoni” Kauwe.

“Although Pacific Islander and Native Hawaiian populations are thought to have a higher-than-average incidence of Alzheimer’s disease and related dementias, the actual rate of disease is unknown because the communities are under-represented in health research,” read a press release from the project. “In a national Alzheimer’s DNA database, only 17 DNA samples out of 45,000 were from these populations. Studying the disease was also difficult because diagnostic tools and educational materials had never been translated or adapted for Samoan, Tongan and other languages.”

“There haven’t been any studies conducted in these groups before, this is the first time this type of research has been done,” said Tavana.

Fluent in Samoan and Tongan, Tavana has translated diagnostic testing materials into those languages.

“A lot of these people have lived here in the States, speak English perfectly,” Tavana said. “But it makes such a difference when they walk in and see that it’s people from their communities, and it’s people that can speak their languages.”

The team has held brain health events in the U.S. – including Utah where some 50,000 Pacific Islanders reside – and American Samoa.

“Our recruitment efforts are unique. We did have to get a little creative. We recruit through our congregations for our church our congregations that are made up of individuals from these populations.

Almost 7 million Americans are living with Alzheimer’s disease, a progressive brain disorder.

Perry Ridge an associate professor in BYU’s Department of Biology, says with no cure, scientists look to prevention and this study will give them more insight on groups who are underrepresented in clinical trials.

“It’s a really big challenge for the affected individual and their families,” he said.

Mele Tofa’s husband Sam was diagnosed with Alzheimer’s six years ago.

“My kids started noticing my husband’s symptoms back in 2018. He started to make up stories. He was getting aggressive. He was different. We thought it was just memory lapse.”

Mele’s daughter quit school to help out so they can keep him home safely, but sometimes it’s hard.

“It’s a 24-hour job. I didn’t have any training or anything.”

She’s found answers at one of Tavana’s brain health fairs.

“It really opened my eyes to the many resources and opportunities that are out there for our Polynesian communities. As hard as it is, I get help. I’m able to get out of the house with my husband at times. I’m able to take him to senior centers so he can be with others,” Tofa said.

This is a sign to Tavana that her work must continue.

“I’ve been talking about this for so many years, but I get emotional every time I do,” said Tavana. “We have such a deep sense of responsibility to our elders to take care of them but sometimes asking for help has been hard.”

Researchers are halfway through the multi-year project funded by the National Institute on Aging. They also partner with Washington State University researchers, who are working with Native American communities. Their goal is to collect 3,000 DNA samples from Pacific Islanders, and they have collected nearly 800 so far.

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BYU researcher developing Alzheimer’s tests for Pacific Islanders