Making Alzheimer’s diagnostic tools accessible to Native Hawaiians and Pacific Islanders

American Indians, Alaska Natives, Native Hawaiians, and Pacific Islanders are culturally and geographically diverse. But they all experience an unequal burden of conditions such as hypertension, type 2 diabetes, and low socioeconomic status—and that heightens the risk for Alzheimer’s disease.

These groups are also vastly underrepresented in genetic research on dementia—which has serious implications for diagnosis, treatment and care of a disease that has staggering clinical, social, and economic costs.

But BYU is playing a role in closing that gap. The university is one of three academic research partners in a $14.6-million National Institute on Aging-funded project called NEAR: Natives Engaged in Alzheimer’s Research.

BYU’s focus is on Native Hawaiians and Pacific Islanders, a reflection of the university’s presence in Hawaii and the Church’s deep connections in these communities. In fact, many members of the BYU research team are members of the communities in the study, including BYU–Hawaii President John "Keoni" Kauwe, an internationally recognized Alzheimer's researcher, and BYU PhD candidate Justina Tavanā (’23).

Already, BYU has provided a breakthrough: 25% of their sample had the APOE ε4 gene, which influences Alzheimer’s risk. That percentage is far higher than what’s been found in other groups.

Tavanā, who was raised in Samoa and Utah and speaks Samoan, English, and Tongan, has used her fluency to create culturally appropriate exams and clinical tools for communities where none existed before. She’s also recruited BYU and BYU–Hawaii students from the native communities to assist at “brain health fairs,” where they’ve screened individuals for dementia, taught hundreds of people about the disease and collected additional DNA samples for future research.

“When the participants see all of these native scientists there who can speak their language and who are from their communities, it’s opened a lot of doors,” Tavanā says. “I know that the Lord loves all of his children and this work is evidence of that love. The overwhelming receptiveness, willingness, and gratitude of participants reflect God’s guiding hand, as they understand the potential positive impact this work will have on their families and communities. I consider myself truly blessed to be involved in this work.”

“There’s potential that these increased rates come from a genetic factor that might teach us something important about the disease,” Kauwe says. “And these communities are excited to see someone care about them, to see somebody try to make Alzheimer’s diagnosis and information accessible to them. We’ve felt a lot of love and warmth, brotherhood, and sisterhood as we’ve done this work.”