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HomeAsian NewsCultural neglect makes AAPI dementia harder

Cultural neglect makes AAPI dementia harder


By Mahlon Meyer
Northwest Asian Weekly

(Photo provided by Trang Tu)

By the time her mother moved in, the 84-year-old woman was already having memory issues. So her daughter, Trang Tu, adapted her house to make it as accessible as possible. As one example, she put labels on each of the cabinets and drawers in her kitchen to indicate what they contained.

Dementia, with its loss of memories over time, is a profoundly disorienting disease, said Tu, and she was aware her mother was moving into a new physical and cognitive space—and wanted to help her.

To further ease her way, but to stimulate independence, Tu had the idea to encourage her mother to retain the independence of thought and action she always had.

So she put a simple diagram on the coffee machine, with steps, such as, “First, you take a spoonful of coffee; Second, you boil the water.”

“It was not my intent not to make her coffee in the morning, and in fact, I would have been glad to do it,” said Tu, who just turned 50.

But when her mother came out and saw the sign, she became deeply hurt and angry.

“You’re my own daughter,” she said. “You can’t even make me a cup of coffee?”

Such moments of disconnection epitomize the failings of a system largely set up for white families, and upon which Tu was initially drawing, after educating herself in the intricacies of the disease. The mainstream correctly indicates that a person suffering from dementia should be encouraged to be independent for as long as possible, to retain memory function. But in Asian American and Pacific Islander (AAPI) culture, this can conflict with the deepest values to care for and nurture elders.

“Mainstream practices teach that when someone has dementia, you are supposed to hold off doing as much as possible for them and let them do for themselves to the greatest extent possible in order for them to retain their brain functioning and avoid deteriorating even faster. You are supposed to let them retain as much independence as possible,” said Tu. “But in our culture, we are supposed to take care of our parents and do things for them even when they are healthy.”

Such conflicts are even more urgent since AAPI families have many more instances of caregiving.

Compared with 22% of white families that have a caregiver for an older relative, 43% of AAPI families are in Tu’s situation.

That makes it even more pressing to find solutions to such cultural conflicts that, according to Tu and others, can extend into how care is delivered and cause catastrophe.

In Tu’s case, even during the first month, she was able to find a solution. Tu initially tried to explain what she was doing, but her mother was already at the point where conversations of such sort were difficult, if not impossible.

So she tried to be creative and find a way to bridge the conflicting cultural values.

“I took the middle road. I stayed with her, and we did it together, but I let her take the lead,” said Tu.
Still, this was only one instance out of a single day that has since stretched to eight years, during which Tu has had to make adaptations for the unique personality of her mother and her culture.

Such continuous adjustments add to the exhaustion of an already inconceivable schedule of 18-hour days of caregiving.

But Tu says she is just one of millions in the same situation—and one that is growing.

AAPI are the fastest growing minority group in the country, and between 2010 and 2030, the AAPI older population will increase by 145%, according to a 2016 University of Washington (UW) study.

Disconnection

Trang Tu with her mother, Nguyet Dang. (Photo provided by Trang Tu)

As a result of cultural disconnection, providers are often unfamiliar with Vietnamese culture. They have, for instance, neglected to realize that Tu’s mother would tend to remain silent about any pain she was having rather than speak up about it, which at times impacted medical diagnoses and treatment she received. On the other hand, Vietnamese elders, lacking knowledge about dementia, have either spoken to her mother as if she were a baby, or entirely ignored her and spoken to Tu instead.

Such cultural mishaps have also prevented Tu from finding caregivers that are qualified.

“In general, it’s very hard to find a good caregiver, especially since the COVID pandemic, for numerous reasons. But if I did manage to find someone who had some training in dementia, they’d likely not speak Vietnamese nor understand our culture,” she said. “And if I prioritized finding someone who spoke Vietnamese, which I have, they would be less likely to know about dementia, let alone good practices, and would end up doing everything for her, contributing to her faster decline, which we experienced with several professional caregivers early on.”

Moreover, even for state-licensed caregivers, state training does not require training about dementia.

There is an optional certification that offers eight hours of training about dementia, which barely scratches the surface, Tu has found.

In the end, Tu found she was spending so much time training caregivers, that it was better for her mother, to do it herself.

“One of the very first things someone told me when my mom was first diagnosed and probably the most valuable advice I got was to educate myself, and that’s when I bought every book that I could,” she said.

Starting with the book, “The 36-Hour Day,” which was recommended by her mother’s first neurologist, Tu attended as many webinars and state conferences as she could that seemed relevant.

“I found that really helpful because unlike other diseases which may be more understood or more obvious, dementia’s not one of those, I found. And so I just read and soaked up everything I could and that’s where I learned about many symptoms, like the debilitating anxiety dementia can cause. So many symptoms made a lot more sense to me after I read up. Anxiety is one of them because they’re just losing their ability to be oriented in the world and losing their ability to make sense of what is around them. So what can we do as care providers? We can’t change the memory loss, but we can help with the secondary symptoms. What can I do to help reduce her anxiety? What can I do to help keep her oriented because that will reduce her anxiety?”

Financial considerations compound the challenges—something that many millions of others living with dementia and their families experience. In the case of Tu and her mother, “We’re in this sort of donut hole.” After their family fled Vietnam to come to the U.S., Tu’s parents went to community college and went on to jobs with the state government, which provides her mother with some retirement income, not nearly enough to pay fully for private care, but just above the income level required for Medicaid subsidies. In caring for her mother, Tu was initially able to work outside the home and take care of her mother, but as her mother declined, Tu has had to leave other work to focus solely on her mother, living off her savings to cover expenses.

Dementia and AAPI families

Dementia itself is complicated and can be discouraging. There are multiple types with multiple manifestations and causes, according to Timothy Chang, a neurologist at UCLA.

Alzheimer’s, which is the most common, is primarily known for memory loss. More than 5 million Americans have been diagnosed with it. Vascular dementia is caused by cardiovascular issues, the same kinds that can cause heart attacks.

“It’s like you’ve had multiple tiny strokes,” said Chang. Dementia with Lewy Bodies can cause hallucinations. Frontotemporal dementia impacts behavior and speech, with sufferers often saying or doing inappropriate things.

You can also have “mixed dementia,” where all or some of these dementia combine. These are the most common.

Besides the symptoms, one challenge is that patients and families, knowing there is at present no cure, lose hope and fail to continue seeing a neurologist, said Chang.

“But there are complications that may arise along the way,” he said. “And we’re in it for the long run.”

(In the future, gene editing techniques, such as CRISPR-Cas9, may yield a cure for some patients.)

One difference about AAPI families, said Chang, speaking in generalizations, is that they may have family caregivers. The positive side of this is that the patients will have solid support at home from children and even an extended family.

But a potential downfall may be that they might delay seeking medical advice or see the illness as simply a sign of growing old.

The UW study found that stigma attached to dementia among some Asian families increased shame and prevented their seeking help. For instance, in Chinese culture, dementia was seen as a form of mental illness, which it is not. And in other cultures, it was sometimes seen as a sign of bad karma affecting the whole family.

In fact, the only family relevance is that those people with a first-degree relative with Alzheimer’s disease (for instance, mother, father, sibling) have about a two-times higher risk of developing the disease.

“However, many patients with a family history do not go on to develop Alzheimer’s disease,” said Chang.

The next frontier

Aakanksha Singhvi

To treat dementia, there are medications that slow the disease. But researchers like Aakanksha Singhvi are finding new approaches. Singhvi, who leads a lab at Fred Hutchinson, studies glial cells, which make up half the brain, but have traditionally been neglected in favor of neurons—the other half.

Glial cells perform multiple functions, including sculpting and shaping neurons as they grow from birth. They regulate food and they create the blood brain barrier that prevents the brain from succumbing to infections when the rest of the body is sick.

“They are like the gardener that trims and nourishes a rose bush,” said Singhvi—with the rose bush symbolizing the neurons.

Describing their relationship with neurons, she clasped both hands together, intertwining her fingers, and flexing them outwards. “By themselves, each half is nothing, but together, they make up a network.”

The human brain has hundreds of billions of glial cells and neurons that “are in molecular conversation” with each other. To simplify our understanding of how that happens, and to find treatments for such afflictions as dementia, Singhvi studies a certain type of worm that has only 56 glia cells and 302 neurons. By irradiating the cells with different colors of light, she and her colleagues can actually see the activities between the different types of cells taking place, which is literally observing how thinking takes place, albeit in a simpler life form.

Already, they are studying how glial cells age and believe the trimming function that they perform changes over time. This is significant for dementia, which in many cases is caused by the buildup of a certain kind of plaque in the brain.

Hope

Although there will probably not be a cure in our lifetime “that will make you the same way you were before you had the disease,” said Chang, there is hope.

He predicts there will be a way to slow down the progression of the illness much more effectively than now. At the same time, more efforts are being directed to prevention. People who are prone to dementia will be recognized more easily and therapies and activities more targeted.

At the moment, regular exercise, eating a balanced diet, keeping the mind active, for instance through learning a new language or musical instrument, are some strategies to ward off the disease.

For Tu, however, caregiving seems to become more challenging with each day.

“Probably the biggest physical caregiving challenge in her current stage of dementia is eating. She has dysphagia, which is a condition that makes swallowing difficult and gets progressively worse over time. Supporting her to eat while managing dysphagia is incredibly complex and time consuming. She takes about 10 to 20 seconds to swallow each bite, followed by a wait of 20 to 30 seconds per bite to ensure it has cleared,” said Tu. “She is at high risk for aspiration, which can cause pneumonia, because her weakened swallowing muscles and coordination mean food can easily go down her airway and into her lungs. Food residue that isn’t swallowed and gets built up in her throat above her vocal cords causes an uncomfortable gurgle that can only be cleared with strong coughing. As her coughing response has weakened, this also takes time. The bulk of her waking hours are spent feeding.”
But Tu still finds hope.

“In Asian culture, we do have this concept of debt, and it is important, but I don’t feel it’s so black and white that I’m literally paying her back,” she said, when asked if she felt she owed this to her mother.

“It’s like a more general gratitude that she’s my mom, she raised me. I want to do this for her, even considering how hard it has been.”

Finding strength, even in grief, has been another outcome she perhaps never expected.

“There is another aspect for those who haven’t experienced it, there’s just kind of always an underlying level of grief. But you wake up every day and you find the joys, you find meaning. I run. You do the day-to-day things. But there’s never fully, at least for me, there’s never fully joy—like it was prior to this. Prior to eight years ago. And I think that’s a big part of the change. But along with that, there’s no good or bad. It’s just sort of like growth, and there are things that come out of the experience that are new. Finding new strengths and resilience. In her and in me.”

Mahlon can be reached at info@nwasianweekly.com.



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