The Positive Aspects of Dementia Caregiving in Asian Communities

Studies have primarily focused on caregivers from western societies, with little attention to potential cultural differences. Asians, in particular, have a great diversity, being the largest and most populous in the world. 

In the United States, Asian Americans represent more than 30 nationalities and ethnic groups, but they are typically categorized as Asian or AAPIs (Asian Americans and Pacific Islanders) for reporting. 

Therefore, exploring the positive aspects of caregiving in the context of Asian communities is critical to developing a more robust understanding of dementia caregivers within this population. 

According to research published in BMC Geriatrics, positive aspects of caregiving are significant coping resources for informal caregivers of people with dementia (PWD). The study revealed three major themes: positive aspects within the self, positive aspects between caregiver and PWD, and positive aspects between caregiver and others. 

Comparing these themes across Asian and Asian American cultures is critical to building understanding and awareness about caregiving in these communities.

Moreover, AAPIs are among the fastest-growing population of older Americans in the United States. They come from the five largest ethnic groups: Chinese, Filipino, Japanese, Indian and Korean. Like other underrepresented communities, some Asian-American subgroups have a higher risk of developing dementia than Whites. 

According to the Centers for Disease Control and Prevention (CDC), Asian Americans 65 years or older account for 8.4% of Alzheimer's cases and other dementias (ADRD), despite being less than 6% of the nation's population. But additional research is necessary to understand the prevalence of ADRD in this community. 

It is therefore important that health and social systems support dementia caregivers of AAPI elders through better training to understand the signs of dementia and the informal caregiving experience. Training can also help identify and tackle stressors to reduce caregiver burnout and depression. 

Findings from the BMC Geriatrics study show that better training to understand dementia caregiving is a sub-theme of one of the major themes, "positive aspects within the self," that can help caregivers cope. Further sub-themes included personal growth, role satisfaction and improved awareness of self-care. 

While the study is based in the experience of Asian people, this shows the similarities between Asians and the Asian diaspora regarding caregiving matters. As the saying goes, knowledge is power, so having information is critical to improving the caregiving experience. 

Other positive aspect of caregiving included demonstrating filial piety towards PWD, happiness and positive attitudes of PWD, positive interactions with PWD, and closer relationships with PWD. 

One thing that is unique to caregiving in the Asian community is the cultural emphasis on filial piety, which is a concept that emphasizes the importance of respecting and caring for one's elders, said Rajiv Ahuja, an associate director at the Milken Institute Center for the Future of Aging. 

"In many Asian cultures, filial piety is considered a moral duty and a way to show gratitude and respect for the sacrifices and contributions made by parents and elders. As a result, adult children in Asian families often prioritize caregiving for their aging parents and grandparents." 

But societies must address the cultural complexities in aging and filial obligation. For instance, it is a disservice to everyone if caregivers ignore their physical, mental and financial well-being because they are the primary or secondary caregivers. 

Hence strengthening the family unit is paramount to a successful caregiving experience, where everyone feels seen, heard and valued. It also involves having open and honest conversations and respecting others' opinions. 

"I never liked the idea of putting my parents in a home. I have been raised to believe it is almost like a disgrace," said Priya Mathews (not her real name), a government employee and second-generation American of Indian descent. 

"But living in America is so different. People work a lot, lives are busier, and it's not the same support system. I would try to keep my parents at home and get some assistance. I may need to make sacrifices like taking a leave of absence from work or resigning." 

Despite the stresses and strains of caregiving, a healthy family unit, befriending peers and sharing dementia and caregiving knowledge with others can make the caregiving experience worthwhile.

Yet we cannot control when life throws a curveball, mainly when historical decisions affect an entire nation. For example, the impact of China's "One-Child Policy" was tremendous and still affects families today. The one-child policy was about population control for economic growth. But it had long-term implications that are only now apparent — the primary one being the care and treatment of older adults. 

China faces many challenges with a rapidly aging population, including families struggling to care for older adults and those with no children to care for them in old age. Sadly, those who have also lost their only children face barriers in accessing nursing homes, health care, and burial plots. 

As China struggles to address the physical and emotional needs of its massive and often rural, aging population, AAPI elders, particularly subgroups like Cambodian, Laotian and Hmong Americans, are also dealing with their unique experiences as minorities in the U.S. 

They may generally receive a delayed diagnosis and inadequate treatment for dementia and face barriers to accessing services, stigma, language barriers and cultural conflicts in health care. One thing that people should know about caregiving in the Asian community is the importance of cultural competency and understanding, said Ahuja. 

"Caregiving practices and attitudes toward aging, illness and end-of-life care vary widely across Asian cultures. Caregivers and health care providers need to be sensitive to these differences." By challenging bias, health care can improve cultural competence, empathy and patient outcomes.

No region will be more impacted by population aging than Asia. In the U.S., rising longevity among AAPI elders continues to alter the demographic landscape. As populations increase, the social and economic burden of ADRD on these communities is expected to grow. 

Consequently, equipping family members to provide high-quality care will involve increasing cultural-specific aspects of caregiving. It also requires highlighting lived experiences as a major step toward better awareness and inclusion. For members of Asian communities, this is a game changer for improving the caregiving experience.