New Study Aims to Overcome Barriers to Dementia Caregiving Experienced by Chinese Americans

Aging studies specialist Jinyu Liu is working on a novel intervention for caregiving in New York City’s Chinese American community.

The Chinese American population is aging rapidly. According to new statistics released by Rutgers University’s Institute for Health, Health Care Policy and Aging Research, from 2000 to 2010, Chinese Americans aged 65 and over grew at a rate four times higher than the overall U.S. older adult population. As of 2016, 14 percent of the approximately four million Chinese Americans were aged 65 and older. Naturally, as this population ages, they are increasingly susceptible to Alzheimer’s disease and related dementias (ADRD).

Professor Jinyu Liu is concerned about the toll this caregiving burden may take on Chinese American caregivers. Moreover, through her work on family caregiving among Chinese Americans, she holds that caregivers within this population face some unique challenges. On the one hand, she posits, Chinese American caregivers are no different from other Americans who have elected to care for parents or other relations who are in cognitive decline. As nonprofessionals, they find the level of caretaking required highly demanding and stressful, with consequences for their mental and emotional health. On the other hand, she observes, Chinese Americans are particularly adverse to seeking the help of trained professionals because of the value Chinese culture places on filial piety: the obligation to care for parents in the same way parents had once cared for them.

Another barrier is the prevalent Chinese belief that ADRD is not a brain disorder but a consequence of wrongdoing—a perception that can lead to “tribal stigma,” or the extension of humiliating feelings beyond the patient to the entire family. This stigma, as well as pressure to maintain an image of family harmony, can make Chinese American caregivers less likely to access informal support from friends and relatives, let alone seek treatment for their own mental health issues, including the many negative emotions and experiences that form part of the burden of ADRD care.

“In a pilot study, many Chinese caregivers reported that it’s hard to find listeners who could understand their stress,” Liu says. “As a result, social isolation and emotional stress are common among these caregivers.”

With a grant from the National Institute on Aging (NIA)—one of the National Institutes of Health (NIH)—Liu hopes to fill this void and help reduce the burdens and stress of dementia care for Chinese Americans. She has received a Mentored Research Scientist Career Development Award, also known as a “K01,” that will enable her to create a novel intervention for Chinese-American caregivers for ADRD in New York City. Specifically, she plans to develop and pilot a culturally-sensitive Peer Mentoring Program (PMP), to recruit and train experienced Chinese American caregivers who can provide volunteer mentoring support to new dementia caregivers in the city, which is home to the largest Chinese American population in the country.

“The PMP is expected to reduce perceived caregiving burdens, which in turn benefits caregivers’ mental and physical health,” Liu says. But the caregivers and their patients aren’t the only ones who stand to benefit from the program. “I also expect that this will stimulate community solidarity and that peer mentors will experience personal growth by participating in the volunteer program.”

Volunteers in the PMP will participate in a three-day training workshop led by a licensed social worker using lectures, discussions, and role-play exercises to deliver culturally competent knowledge about dementia caregiving. Following completion of the workshop, volunteers provide three months of one-on-one support by phone, mentoring new caregivers on culturally specific beliefs about dementia, coping strategies, and social support. They will help caregivers establish coping strategies to address care recipients’ behavioral challenges using skills they themselves have successfully used in their caregiving experiences. Together, the mentor and mentee will also prepare self-care plans for the new caregivers, which may include culturally relevant activities, such as tai chi, Chinese music, or folk art.

At the conclusion of the five-year project, Liu plans to publish her results and submit further grant applications based on the work.

She notes that she designed the project specifically to address one of the NIA’s many research goals, to “improve our understanding of the consequences of an aging society to inform intervention development and policy decisions.” It is also responsive to the National Alzheimer’s Project Act’s efforts to extend ADRD research to more racially and ethnically diverse populations, and Liu expects the eventual impact of this work to extend well beyond the study’s target demographic.

“If proven effective in Chinese Americans, the Peer Mentoring Program, a culturally relevant and empirically based intervention, could be applicable to supporting dementia caregivers in other racial and ethnic minority populations,” she says.

Related link:

• SOCIAL WORK LIVE: Jinyu Liu, Jeanette Takamura, and the Health Needs of Seniors (published February 21, 2019, on YouTube).