Clara Li, PhD, a clinical neuropsychologist and Associate Professor, Psychiatry, at the Icahn School of Medicine at Mount Sinai, has received new grants that will total more than $12 million from the National Institute on Aging (NIA), part of the National Institutes of Health (NIH). The funding will support three new projects that seek to improve the diagnosis and treatment of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) in Asian Americans.
Asian Americans are historically under-represented in clinical research on AD/ADRD. As a result, many older adults with Asian ancestry do not receive adequate diagnosis and treatment for mild cognitive impairment (MCI) or AD/ADRD.
Clara Li, PhD
“Chinese is the third-most-spoken language in the United States after English and Spanish, yet we don’t have many of these tools available,” Dr. Li explains. She’s hoping to change that, with three new studies launched in 2023.
Adapting Assessments for Alzheimer’s: Chinese Translation and Cultural Adaptation
In one of the studies, a five-year effort, Dr. Li will develop assessment tools that are linguistically and culturally adapted for older adults who speak Cantonese or Mandarin, with the hope to extend it to other Asian languages in the future.
Researchers rely on assessment tools from the National Alzheimer’s Coordinating Center Uniform Data Set (NACC UDS) to identify research participants with cognitive impairment or AD/ADRD. But those tests were developed for English speakers and Western cultures.
“I’ve seen many Asian American patients who try to take the English tests because a Chinese version isn’t available, and the language is a barrier,” Dr. Li says. “Sometimes a test would suggest cognitive impairment, but when I would translate the test myself into Chinese, the patient would score in the normal range.”
Language isn’t the only barrier. Cultural differences also make the test confusing for many Asian American patients. When asked to identify an image of a witch on the standard test, for instance, some of Dr. Li’s patients said “janitor” or “cleaner”—a common error because witches aren’t typically depicted with brooms in Chinese culture.
The lack of adequate tests hampers diagnosis and treatment, and also affects research seeking to better understand AD/ADRD in Asian Americans.
“Because we can’t enroll patients unless they can take the tests in English, many are excluded from studies. As a result, Asian Americans make up less than 2 percent of the participants in U.S. clinical trials,” Dr. Li explains. “If we want to increase diversity in research, we need to adapt these materials for Chinese speakers and eventually other Asian languages.”
A Research Infrastructure for Alzheimer’s Disease in Asian Americans
In the second study, Dr. Li will develop a research infrastructure and tools for studying AD/ADRD in older Asian Americans. She and her colleagues will develop questionnaires to fully characterize Asian American participants, including social determinants of health and any environmental or lifestyle factors that could increase or decrease their risk of developing AD/ADRD.
This five-year study will also investigate blood samples from Asian American participants to determine whether there may be novel biomarkers in this population, and whether known biomarkers are relevant to people from Asian backgrounds.
“Amyloid and tau are well known as biomarkers associated with Alzheimer’s disease, but those biomarkers were developed primarily from Caucasian samples. Therefore, the generalization of these findings in Asian Americans is not always clear, including criteria for amyloid and tau burden to establish AD/ADRD risk,” she says. “There may be different thresholds for those biomarkers in different populations.”
Support for Mild Cognitive Impairment
Dr. Li’s third newly funded project is a two-year pilot clinical trial. She and her colleagues will adapt the Memory Support System (MSS) for use in Chinese Americans who speak Cantonese or Mandarin. The MSS is a memory calendar training program to help older adults with MCI organize and remember their daily activities. The system is a component of the Healthy Action to Benefit Independence & ThinkingÒ (HABIT) Program, an evidence-based intervention that provides lifestyle and behavioral treatments for older adults with MCI.
“I see patients with MCI who want to do something to prevent the development of dementia, but if they can’t speak fluent English, they aren’t able to participate in clinical trials,” Dr. Li says. “We hope that by adapting this program, we can offer Chinese American older adults with MCI an opportunity to participate in a trial that seeks to improve memory and function, as well as their mood and quality of life.”
Alzheimer’s Disease Research at Mount Sinai
In addition to the three new studies Dr. Li has launched this year, she is leading two clinical trials at the Alzheimer’s Disease Research Center at Icahn Mount Sinai and is the site Principal Investigator for the Asian Cohort for Alzheimer’s Disease (ACAD) study, a multisite project to analyze genetic data to identify risk variants for Alzheimer’s disease in Asian Americans and Asian Canadians.
Through these projects, she hopes to improve research participation, diagnosis, and treatment related to patients of Asian ancestry—an effort that is long overdue, she says.
“There’s a lot of work that needs to be done. In addition to research inequities, there aren’t enough bilingual physicians outside the community, which often makes it difficult for Asian American older adults to receive integrated specialty care, leading to delayed diagnosis and treatment for AD/ADRD,” she adds.
Mount Sinai serves a diverse patient population and is committed to improving care by addressing bias and racism. Icahn Mount Sinai and Mount Sinai Health System created the Center for Asian Equity and Professional Development to address the equity and professional development challenges faced by Asian Americans and Pacific Islanders.