When Justina Tavana translates dementia diagnostic questionnaires into her native Samoan, she thinks of her aunts.
Both were diagnosed late, and no one knew that what they suffered from was dementia until it was too late, and symptoms couldn’t be managed.
It’s why Tavana, a Brigham Young University biology graduate student, became a certified dementia practitioner and researcher.
“As I’m doing these assessments, I’m always picturing them,” Tavana said of her aunts, “and thinking, ‘Wow, if only you had this.’”
Samoa is an archipelago between Hawaii and New Zealand, whose eastern islands are U.S. territories known as American Samoa.
While there’s no cure for Alzheimer’s and related dementias, an early diagnosis can help patients improve their quality of life, by taking medications to slow progression and partaking in services like speech therapy to manage symptoms.
But Alzheimer’s and dementias are understudied in American Indian, Alaska Native, Native Hawaiian and Pacific Islander people, and screenings have been developed and modeled on mostly white people.
As part of the National Institute on Aging-funded Natives Engaged in Alzheimer’s Research program, Tavana and others are trying to fill that gap, translating diagnostic tools into Samoan and Tongan, creating culturally relevant tools, educating communities on the disease. Each of the main studies under the program are co-led by Native researchers.
The teams also are collecting and cataloguing DNA samples from Indigenous people for a repository to help scientists better understand genetic factors for dementia in the groups.
“These populations have really not been studied at all,” said Alzheimer’s geneticist John “Keoni” Kauwe, a Native Hawaiian and president of BYU-Hawaii. “We don’t know if there are novel genetic factors that are influencing disease in Native Hawaiian, Pacific Islanders, American Indians, Alaska Natives. And if we knew those things, it could teach us fundamentally new information about the pathology of disease. It could give us novel insights into therapeutic interventions. It could change a lot.”
‘Protecting memories’
Dr. James Galvin, a neurologist at the University of Miami, said the same genes that are regarded as risk factors for Alzheimer’s might not be risk factors in Indigenous people, making it crucial to explore what unique genetic factors are at play.
“If you really want to take a more precision-based approach, you really need to understand everything you can about a (population),” said Galvin, division chief for cognitive neurology and founder of the Comprehensive Center for Brain Health. “We’re collecting those vulnerability and resilience factors.”
Galvin is working with Tofaeono, executive director of the American Samoa Community Cancer Coalition, who is leading the research study Puipui Malu Manatu, which translates to “Protecting Memories” in Samoan.
Vaatausili Tofaeono’s grandfather suffered dementia, but didn’t have access to services or diagnosis. His mother and her siblings also suffer from the disease.
Along with translating tests and collecting blood samples, Tofaeono is creating educational material to help destigmatize dementia.
“We highly respect our elders,” Tofaeono said, and many believe memory loss is just a natural part of aging. That can lead to people isolating from potential services, he said. In addition, admission to a long-term care facility could be interpreted as disrespecting an elder. He hopes his research will help develop culturally informed services.
Diagnostic tools in native languages
One of the biggest barriers to accurate diagnosis is a lack of culturally and linguistically relevant diagnostic tools.
Many elders don’t rely on analog clocks, for example, Tofaeono explained, yet one cognitive assessment includes a clock diagram test.
“It wasn’t part of the culture. It’s not part of the daily lifestyle. So, how can you be really assessed about your cognitive ability on something that you weren’t really educated about?” Tofaeono said.
One of Tavana’s aunts was an English speaker and lived on the U.S. mainland for four decades.
But her symptoms worsened, and by the time she was assessed she was only able to speak Samoan.
“All of these assessments were in English, and made it hard. So, again, another important reason why these have to be in your languages,” Tavana explained.
Risk factors and education
While rates are obscured because of the lack of data, medical or behavioral risk factors like obesity or tobacco use disproportionately affect Native Hawaiian and Pacific Islanders, Tofaeono said.
As part of the studies, researchers also are educating community members and caregivers on those lifestyle factors. Together, Tofaeono and Tavana have held “Brain Health” fairs to recruit participants for their studies and provide information on the disease.
“We’re really thinking about these health disparities, and both how we can help people,” Kauwe said, “how the participation of those people and communities in the research can help the broader research outcomes and our ability to treat and cure these diseases in the future.”
Tavana hopes that the studies fill gaps in knowledge and care, so the elders of her community can have better access to services that her aunts didn’t have.
“People are excited about the work that we’re doing, and want to contribute any way that they can, because they understand that this is going to help not only themselves, but their community, and really the Alzheimer’s disease world as a whole,” Tavana said.
Reach Nada Hassanein at nhassanein@usatoday.com or on Twitter @nhassanein.
Source link: https://www.usatoday.com/story/news/health/2023/06/27/meet-the-pacific-islander-scientists-closing-gaps-in-alzheimers-data/70356391007/