Honoring tradition while fighting stigma in the Asian community
Sang travels regularly from Southern California to the Bay Area to help care for her dad, Quan, who has Alzheimer’s. Along with her mom and three siblings, their family has come together to keep him at home as long as they can. After her father’s diagnosis, Sang wanted to do more, and began volunteering as an Alzheimer’s advocate helping the Asian American Pacific Islander (AAPI) community have a voice.
Breaking gender roles
Quan was born in China in 1935 during the country’s civil war. A mild-mannered man, he is gifted in seven languages, having lived throughout many parts of Southeast Asia. As an immigrant to the United States, he always marveled at the beauty and bountiful opportunities of his adopted homeland.
In order to provide for their family, Quan and his wife Chanh worked. Because Chanh worked the late shift, Quan was typically the one staying home with their kids, cooking dinner, cleaning the house and signing permission slips. “He was the gentle soul,” said Sang, Quan’s second oldest child. “He was an example of gender equality before we understood the concept. That was a gift, to have more gender balance in a traditional marriage. I was always proud of my dad for exemplifying that.”
Quan spent 25 years working as a grocer. When his kids were younger, he’d ask them to help him spell words like “watermelon” for display signs. While Quan loved his job, having only a sixth-grade education, he wanted more for his children. He made sure they understood the importance of education, and all four of his kids received college degrees, with Sang earning a PhD in Public Health.
Sang says, “When I look back at Dad’s life, a real metric is – raise a family, raise good kids and grandkids in a country he immigrated to. He is exemplary in that way.”
Changes in behavior
In the years before Quan’s diagnosis, his family had noticed odd behaviors like repeating the same story he read from the newspaper, accusing others of stealing or having an aggressive behavior. At the time, Quan was in his 80s, making the family unsure if this was a normal sign of aging or if it was in fact memory loss.
In 2019, Sang brought her dad to his primary care doctor, who asked him questions to test his memory. “I remember being in the exam room,” said Sang. “The doctor was asking basic questions such as, ‘Where do you live?’ things like that. When he got to the question, ‘Who is the president?’ He said, ‘Clinton.’ It was 2019; Clinton was not president.”
Quan was diagnosed with Alzheimer’s and his family was told he was already in the middle stages of the disease.
Home care
For the first year after his diagnosis, life for Quan stayed relatively the same. However, as the disease progressed, Quan would go on walks and come back to the wrong house, forget where he put things and stopped being able to remember if he had showered that day. It was clear to Sang and her family that their dad would need more support.
While Chanh was, and continues to be, Quan’s primary caregiver, she is in her 70s and can’t fully care for Quan on her own. Their four children were able to pool their resources and hire a caregiver that comes to the house to help care for Quan four days a week. Additionally, the four children take turns sleeping at their parents’ house, so Chanh is never without additional help.
Sang, who primarily resides in Southern California, flies back to the Bay Area for weeks at a time to help care for her father. “We all take turns and manage our shifts,” said Sang. “We have a Google calendar on our phones. Everyone [except me] is local, 30-60 minutes away from the house. I’m the one that lives at home part-time even though I’m 50 and own my own home. When I’m here, I’m here for days or weeks.”
Becoming an advocate
After their father’s diagnosis, Sang went to the internet to learn more about the disease. There she discovered the Alzheimer’s Association’s website. Understanding the importance of newsletters from her own work, Sang signed up for the Association’s newsletter. When she saw there was a need for advocates, she thought to herself, why not volunteer?
Alzheimer’s advocates drive policymakers to address Alzheimer’s and other dementia, and improve the lives of everyone affected by Alzheimer’s. Today, Sang is one of those volunteers working directly with Congressman Eric Swalwell.
“This is how I can help my dad more than [caregiving],” said Sang. “I started going to Advocacy Day [in Sacramento] and have been going to Advocacy Forum [in Washington D.C.] for the last three years.
“I’m giving a voice to the community of people who cannot take care of themselves, no longer able to speak, and must rely on everyone else. If we’re not the ones advocating, then who will be there for people like him?”
Alzheimer’s in the AAPI community
In the Asian American community, 59% of unpaid caregivers report providing assistance with personal care, such as bathing, eating or dressing. More than half (56%) of Asian Americans believe that significant loss of memory or cognitive (such as thinking or learning) ability is a normal part of aging. However, despite being the fastest growing major racial group in the U.S., Asian Americans are among the least represented groups in scientific research.
According to the U.S. Census, Asians make up more than 15% of the California population, with a large percentage of them living in the Bay Area. Fortunately for Quan and his family who reside in the Bay Area, they are part of the small minority (12%) of Asian Americans that report that they have no barriers to excellent Alzheimer’s and dementia care, whereas most of the Asian American population (88%) report experiencing some barriers to care.
Quan was fortunate to have a primary care doctor that spoke Mandarin. While Quan never mastered English, in the event he met with an English speaking doctor, he always had one of his children or his wife nearby to translate, even before the Alzheimer’s diagnosis.
“It’s always been like that,” said Sang. “It’s never a problem because it was always this way. Explain what’s happening, we’re the proxy. When you’re so used to translating for family members all our lives it’s no problem [now].”
Fighting stigma
A language barrier isn’t the only reason diverse communities have difficulty accessing treatment and care. There is a stigma in the AAPI community that having dementia is shameful. Families are embarrassed to admit their loved one is vulnerable or exhibits a weakness such as dementia for fear of how their family will be perceived.
Because of this stigma, Asian Americans are less likely to report that they have the disease, leading to less accurate data and less likely that the AAPI community will receive culturally relevant resources. Sang hopes that her work as an advocacy volunteer will help fix this.
“I wish there were more Asians [participating in Advocacy],” said Sang. “Someone needs to step up and do more for those of us who can’t. When I went to State Advocacy Day, I looked around the room and it’s largely older White people doing this, which is fine, but it doesn’t represent the demographic of people with [dementia] in California.
“There may be differences in the way [the AAPI community] responds [to treatments], or the way caregiving is considered. Our families are impacted, and there needs to be cultural sensitivity to the work and the movement itself. Legislators and policy makers [need to know] this is an issue, it is non-partisan, and we need to be represented.
“We have a lack of data in the [AAPI] community. It’s a hard topic for Asian families. So much shame, but it’s no one’s fault, no one asked for Alzheimer’s. This is our life. It’s so embedded in our culture; we don’t air our laundry.”
Showing grace
Sang and her family continue to care for Quan, now 90 years old, at home. “That is the expectation, especially for Asians and Chinese,” said Sang. “It’s not about the finances, or language [barrier], it’s cultural. Even before [the Alzheimer’s], we always said that we would keep everyone at home.”
Sang encourages other caregivers to educate themselves on the disease and give their loved one some grace. “It’s a hard [disease],” said Sang. “It’s a progressive disease. We’re going to see changes in behaviors and how to respond. Life is hard enough; we just have to give each other grace on things. Be patient and empathetic.
“I try to think of [caring for my dad] as what we do with family, but also, it’s a privilege to help give my dad the quality of life he deserves. We have him with us still and know we are doing what we can to sustain that.”
For more information on Alzheimer’s and dementia in the Asian American Pacific Islander community visit alz.org/asianamericans.
To become an Alzheimer’s Association advocacy volunteer, please visit alz.org/advocate.
