Chinese and Korean American dementia caregivers face significant cultural and structural barriers to participating in research and accessing services, according to a new study led by NYU Shanghai Provost and Distinguished Global Professor of Public Health Bei Wu. The study, published in Alzheimer’s & Dementia: The Journal of the Alzheimer's Association, a leading journal in the field, highlights how culturally adapted recruitment and intervention strategies can effectively reach these underrepresented populations.
“Dementia is rising quickly in the United States and globally,” said Wu. “Asian American older adults experience higher age-adjusted incidence than white adults, but they remain underrepresented in dementia research and services.”
“When we brought up the idea of counseling to Asian American caregivers, many of them immediately rejected it because counseling was associated with mental health problems,” explained by the first author Jing Wang, an assistant professor at the University of New Hampshire. Wang emphasized that, “this perception reflects broader cultural barriers that shape help-seeking”. Caregivers from immigrant populations, particularly Chinese and Korean families, often face compounded challenges: limited English proficiency, a shortage of linguistically concordant providers, stigma surrounding dementia and mental health, and cultural values such as filial piety and “saving face,” which can discourage open discussion of diagnoses and care needs.
The study comes out of an initiative Wu and her team launched in 2021, the New York University Caregiver Intervention plus Enhanced Support (NYUCI-ES) project, a five-year study supported by the National Institute on Minority Health and Health Disparities. The project was designed to use culturally sensitive recruitment strategies and strong community partnerships to address the unique challenges faced by Chinese and Korean American dementia caregivers.
Building on the proven success of the original NYUCI developed by Dr. Mary Mittelman about 30 years ago at NYU Langone, the NYUCI-ES project extends beyond reducing caregiver stress to also support caregivers’ own health. Many dementia caregivers are older adults with chronic conditions such as diabetes or hypertension, and the intervention was designed to support their self-care alongside their caregiving role.
The study incorporated several innovative features that built on the original study while tailoring it more closely to the needs of Chinese and Korean American participants. The intervention expanded to include social media components, WeChat groups for Chinese caregivers and KakaoTalk groups for Koreans, where facilitators shared dementia care and self-care information and encouraged peer support. In addition to self-reported measures, the researchers also collected blood samples to assess stress biomarkers, providing objective data on health outcomes.
The cultural tailoring was a key reason the paper was accepted by Alzheimer’s & Dementia, said Wu. “Large-scale clinical trials like this had never been done with Asian American dementia caregivers,” she said. “Reviewers valued our focus on an invisible, hard-to-reach population.”
The team devoted significant effort to adapting language, methods, and protocols to better suit the population. Terms that carried stigma were carefully replaced: for instance, using “memory problems” instead of “dementia,” and describing sessions as “information sharing” or “health promotion” rather than counseling. Data collection methods were also adjusted: participants were initially resistant to venous blood draws, leading to the adoption of finger-prick sampling. Although this provided fewer biomarkers, it was more acceptable to participants and contributed to a much lower dropout rate from previous studies.
Community partnerships were equally important to building trust. The team collaborated with CaringKind, New York City’s largest dementia caregiving organization, with local Chinese senior centers and adult daycare centers and Korean Community Services (KCS). Funding support for these community partners, as well as hiring bilingual staff and advisors, proved essential.
“Flexibility and humility were crucial,” Wu emphasized. “We needed to adapt our protocols, respect participants’ privacy, accommodate their schedules, and use language that felt culturally meaningful. Our approach was that we are serving the community, not the other way around.”
With Wu’s new appointment as provost, her team is preparing to extend their work to China. “This is a natural next step,” she said. “The cultural adaptation strategies that proved effective among Chinese American caregivers in the US could be adapted for caregivers in China. Given the overwhelming number of dementia caregivers in China, there is a huge need for support.”
In addition to Bei Wu and Jing Wang, study authors included Xiang Qi, Eunjung Ko, I. Tek Leong, Sungji Park of NYU Rory Meyer College of Nursing, Mary S. Mittelman, Cynthia Epstein of NYU Grossman School of Medicine, Yaolin Pei of University of Texas at Austin, Katherine Wang of Albert Einstein College of Medicine, and Weiyu Mao of University of Nevada.