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Utah’s Pacific Islanders play a crucial role in BYU Alzheimer’s research

BYU Alzheimer's Research, Dr. Justina Tavana at Orem brain health fair, Summer 2022
Jaren Wilkey
Brigham Young University photo
Dr. Justina Tavana, then a Brigham Young University Ph.D. student, speaks with participants at a brain health fair in Orem, Utah in the summer of 2022. The effort is part of the Natives Engaged in Alzheimer's Research project, a BYU initiative aimed at gathering insights into the prevalence of Alzheimer's in populations with limited available data.

A recent report from the Alzheimer’s Association found that while millions of Americans are living with Alzheimer’s or other forms of dementia, there’s a lack of understanding on how to best diagnose and treat it in diverse communities.

Close to 50,000 Pacific Islanders live in Utah, making it the fifth largest such population in the country, after Hawaii, California, Washington and Texas. It also makes Utah a prime location to study Alzheimer’s in that community.

Brigham Young University is part of a major research project called Natives Engaged in Alzheimer's Research. Professor of biology and the president of BYU-Hawaii, John “Keoni” Kauwe, said Pacific Islanders are prime candidates to develop the disease.

“Certainly, any population that's suffering from metabolic diseases such as obesity or Type 2 diabetes has an elevated risk for Alzheimer's disease. And we know that in native Hawaiian and Pacific Islanders, American Indians, Alaska Natives, that those metabolic issues are significant.”

What hasn’t been known is how Alzheimer’s affects that population specifically, because they haven’t been included in the research.

This interview has been edited for length and clarity.

Pamela McCall: There has been a lack of DNA samples from Pacific Islanders to test for Alzheimer’s. How has that sample size grown and why is that so key?

John “Keoni” Kauwe: Genetic studies in Alzheimer's disease have been the foundation for our scientific knowledge. Those studies have been almost exclusively conducted in European populations in the past, and there's been continued efforts over the last decade to expand our study into other populations.

In this study, we've worked really hard to ensure that study leadership at every level are directly engaged with community leaders and tribal leaders across these populations, and that where possible, the actual scientists themselves are members of these communities. In many cases, the tasks are specific to European-American cultural practices.

I have a Ph.D. student, Justina Tavana. She is Samoan; born in Samoa, speaks English, Samoan and Tongan fluently. She's been working very carefully to not just translate the words of those tests, but to translate those tasks to ensure that in these populations — elderly individuals, who maybe Samoan is their first language, they speak some English — but the idea that you could assess their dementia in their second language at this time in their life, it's maybe not a great idea, right? She's been able to develop those tests and is working to validate them right now. For the first time, we'll be able to diagnose Alzheimer's disease effectively in the Samoan and the Tongan languages. That's really exciting.

PM: What is the importance of Utah’s Pacific Islander community taking part in this?

JKK: Both myself and Justina have many personal relationships within the Utah Pacific Islander community. That allows us to have that initial opportunity to engage people, and we have that love and that trust. It's a big population that includes a large number of individuals where their first language is definitely Samoan or Tongan. That gives us an opportunity to engage in the research without traveling all over the world and ensure that our translations and our adaptations of the tests are effective. So there's a lot of layers that are important to having this great Pacific Islander population in Utah that allows us to get some traction and get this work started in a way that will certainly help us benefit more people in the future.

Pamela is KUER's All Things Considered Host.
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