Richard Lui, a journalist and filmmaker based in San Francisco and New York says he “just knew” he needed to take care of his father. “He had always taken care of me as a child,” he says.
Lui is far from alone. In their most recent data on the matter, AARP found that 73% of Asian American and Native Hawaiian/Pacific Islander (AANHPIs) believe they are expected to care for their parents.
So many in the AANHPI community become caregivers for elders as a result of culture and tradition, says Jo-Ann Yoo, executive director of the Asian American Federation in New York. “Strong familial bonds are key for Asian families,” adds Yoo, “and the primary sources of an individual’s personal and social identity emphasize family connections.”
Why many people in the AANHPI community are family caregivers
Several other major reasons AANHPIs step in to care for their older loved ones:
Of these reasons, filial piety – a belief system that one must respect one’s parents, elders and ancestors – is central to many Asian cultures, especially those influenced by Confucianism. “There’s a deference to older generations, which is, in part, demonstrated through family caregiving,” explains Jennifer Tang, a licensed clinical psychologist and director of Everwell Health and Counseling in Michigan, who specializes in culturally sensitive family therapy.
The Pew Research Center reports 27% of Asian Americans live in multigenerational households. Because various generations living in the same household is more common in Asian families, there is a greater importance placed on wanting to take care of elders, says Tang.
This was the case for Madeline Leung, whose extended family is based in Livonia, Michigan. “There was not a definitive beginning to [caregiving for my grandparents] because we were an intergenerational household,” she says. In immigrant families, older generations often depend on younger ones to be an intermediary during medical appointments, dealing with landlords or phone companies, because of the language and cultural barrier. So when parents become elders, especially when it’s an intergenerational household, crossing the line from a family member to a caregiver is often gradual.
Strong stigma against institutional care
“For much of the AANHPI community, there may be some stigma traditionally associated with sending aging family members to assisted living or senior care facilities,” notes Tang, who believes caregivers often feel guilty that it would be considered disrespectful to send their parents outside of the home for care, instead of doing it themselves.
Leung shares, “My mother received a lot of backlash putting my grandpa in a nursing home with memory care when he had advanced Alzheimer’s.” Her extended family was very critical of institutionalized care, believing instead that care responsibilities should fall within the immediate family, which made the caregiving arrangements all the more difficult.
With assisted living and senior homes removed as an option for many, AANHPI family members often feel they have no choice but to become family caregivers.
Unique challenges family caregivers face in the Asian American community
Here is a breakdown of the many unique challenges faced by AANHPI family caregivers, in addition to the universal struggles of taking care of senior family members:
Though Pew Research Center reports nearly three-quarters of AANHPIs speak English proficiently, this is often not the case for seniors who are immigrants. For example, in New York City, the Center for an Urban Future finds, “94% of Korean American seniors and 92% of Chinese American seniors speak English less than very well.” The language barrier means AAPI seniors require extra help from caregivers.
“There are very few language-accessible, culturally competent care facilities available, even though Asian seniors are the fastest-growing demographic in America,” says Yoo. “There isn’t an easy setup to meet the complex needs of our seniors.”
Mistrust of Western medicine and bureaucracy
For some AANHPI seniors who are more recent immigrants, there may be some inherent mistrust of Western medicine, whether due to fear of racism, lack of understanding, feeling understood or feeling supported in the medical system, points out Tang. She says people are resistant to getting professional help because of the cultural expectation that medical and physical needs of elders should be on family members instead of professional care providers.
Yoo agrees, adding, “There is also a lack of trust for strangers who are not immediate family members.”
“Asian American seniors are the fastest-growing and the poorest senior population,” says Yoo. According to Robin Hood, a nonprofit fighting poverty in New York City, roughly one in four Asian New Yorkers live in poverty, making professional assistance mostly out of their reach.
Leung’s parents worked long hours with no benefit or leave at small businesses until they were able to open a small restaurant of their own. There was no one to provide coverage if there was a family emergency. “My parents were stretched thin while trying to run their business and take care of my grandparents’ basic needs,” she says.
Fear of anti-Asian hate
Since early 2020, over 10,000 hate incidents have been reported to Stop AANHPI Hate, including a significant number of hate incidents against Asian American elders aged 60 and up.
“The rise in anti-Asian violence … has added to the burdens of being a family caregiver,” says Yoo. “Regular walks for elders, and little tasks that get seniors out of their homes are almost nonexistent.”
AANHPI caregivers also fear attacks themselves when going to and from work, she adds.
Mental health struggles and stigma
All of the unique struggles listed above can become a risk to mental health wellness. In addition, immigrant seniors often face social isolation. “Social networks and connections are so important to one’s well-being,” says Leung. “Not living in an Asian enclave means that our elders are quite isolated without a larger group of peers and community.”
Immigrants and refugees may also be living with significant past trauma that may not have been properly treated due to stigma and other barriers to mental health care access, which can result in day-to-day struggles for seniors and caretakers alike. For example, a study found 70% of Southeast Asian American refugee respondents were diagnosed with post-traumatic stress disorder (PTSD). But this already alarming number does not highlight the high rates of undiagnosed conditions which exist in immigrant communities.
Tips and resources for AANHPI family caregivers
“Placing the burden of care on the family and the community is not the solution,” says Yoo. “State, city and private caregiving institutions need to examine the changing demographics and cater to the urgent needs of a growing senior community.” The nonprofit executive director adds, “This could mean facilities that are culturally competent, where staff speak Asian languages, Asian food is served and activities that include ones that are familiar to Asian seniors.”
While more culturally competent care services are still lacking, there are many stress-relieving resources for family caregivers in the AANHPI community.
1. Create an action plan
Don’t wait until there is a crisis. Plan early. Lui recommends sitting with elders to go through those tough questions about their preferences and finances. He also recommends the AARP Prepare to Care Guides, which are available in different languages. “Let the guide be the authority, not you as the family member,” he says. “That helps sometimes.”
2. Gather your team
“Caregiving is not the role of one person, nor is it the role of two,” says Leung, who says caregiving requires the collaboration of everyone willing to help – not just family, but friends, religious organizations, nonprofit resources, and more.
Lui also stresses the importance of figuring out who can help with labor and money. “Ask for help to fill in the gaps,” he suggests.
For those who can afford it, Lui recommends hiring a part-time caregiver as soon as possible because it can take a long time to find someone. “They can start as a housecleaner, then advance to activities of daily living (ADL) assistance,” she says. “It’s often a soft way to introduce the concept to a loved one.”
3. Checkout these organizations and resources
- Asian American Federation’s Seniors Working Group (SWG) is a New York-based Asian senior-focused advocacy coalition made up of 12 community-based organizations that provide comprehensive wrap-around services, with culturally and linguistically appropriate resources.
- National Asian Pacific Center on Aging features a helpline in eight different languages, among other resources. Also, check out their partner organizations that share their mission of serving AANHPI seniors in various communities.
- Family Caregiver Alliance strives to improve the quality of life for family caregivers as well as those who receive their care. Along with research, policy, and advocacy, they provide online resources like a services by state page.
- Asian Counseling and Referral Service’s aging services for older adults based in Seattle, range from a food bank, physical activity programs, housing assistance, English classes and more.
- If you don’t live in a major hub of the AANHPI community, finding culturally competent services will be more challenging, but try checking out local AANHPI community centers, houses of worship, clubs, and newspapers for resources – you might be surprised! Take, for instance, the Forever Young Seniors Program at the Tucson Chinese Cultural Center.
4. Take care of yourself first
Self-care is not selfish. Self-care is a necessity, not a luxury, especially in the current climate of heightened anti-Asian hate. Yoo emphasizes the importance of taking care of yourself first so that you can take care of others. Tang sees this in her own family, where her parents — who are part of the sandwich generation — are busy spending hours on the phone calling nurses, social services, Medicare, etc. to set up medical appointments for her grandmother. They also help provide child care for their grandchildren, notes Tang.
The family psychologist says that backup care and respite care options are available for primary caregivers so that they can have short-term relief for a few hours to a few days, or even weeks. “It’s OK to set limits and know when you can say no to something asked of you.”
5. Don’t forget mental health care.
Often it is easy to focus on the physical health needs of those we’re caring for and ourselves more than our mental health, but anxiety, depression and other conditions can be just as debilitating as a broken limb or a heart condition. For both caregivers and care receivers who are living with unresolved trauma, mental health treatment can make caregiving less challenging.
For seniors who are resistant to psychotherapy, it can be helpful to reframe the stigmatizing narrative, says Tang. Many in Asian communities may have internalized mental health treatment as a sign of weakness or pathology. She emphasizes that counseling and psychotherapy can be beneficial for anybody as a space to be honest with how one’s feeling, to be feel seen, supported and validated.
Tang says therapy, especially with a culturally sensitive provider, can also be a place to learn coping strategies to help manage stress. Here are some free resources for finding AAPI therapists:
- Asian American Federation’s Mental Health Directory.
- Asian Mental Health Collective US Therapist Directory.
- Asians for Mental Health Directory.
Mental health wellness does not start and end with therapy, of course. “[Mental health care] may also mean setting up routines that are energizing and fulfilling,” says Tang. “For example, making time to see friends, having time to read books or watch tv shows you enjoy, taking up an exercise class, doing a creative project, etc.”
Leung says her family took care to prevent her grandparents from suffering from isolation. “My mom took my grandmother to Buddhist group gatherings,” she explains. “They bought Chinese language television programs and DVDs and bought Chinese newspapers for my grandfather, in addition to calling friends and family members in China and across the U.S.” Having access to comfort foods like dim sum and going to their favorite restaurants was also helpful.
6. Check out books and films
You are not alone in your caregiver challenges and these resources may help you feel validated and supported.
- “The Age of Dignity: Preparing for the Elder Boom in a Changing America” a nonfiction book by Ai-jen Poo.
- “Permission to Come Home: Reclaiming Mental Health as Asian Americans” a nonfiction book by Jenny T. Wang.
- “Beyond Filial Piety” a nonfiction book by Jeanne Shea, Katrina Moore and Hong Zhang.
- “Tastes Like War” a memoir by Grace M. Cho.
- “Crying at H Mart” a memoir by Michelle Zauner.
- “The Farewell,” a feature film directed by Lulu Wang.
- “Skyblossom” and “Unconditional,” both caregiving documentaries directed by Richard Lui.
- “Minari,” a feature film directed by Lee Isaac Chung.
7. Work to overcome the stigma of hiring outside care
Some AANHPIs may feel cultural guilt or shame, or that it is not respectful to elders to send them outside of the home to care in an assisted living facility or other professional care options, even when it becomes very necessary and might be the best option for everyone. Often these facilities, especially when dealing with memory care, can offer more effective around-the-clock care than family members, says Tang.
“[The elders] can receive professional help from individuals who specialize in providing care for their unique needs,” she adds. “There may also be more social opportunities for the family member with the activities and events often held at these centers.”