Researcher delves into lack of support for Asian-American caregivers — including herself

SACRAMENTO, Calif. – Oanh Meyer is no stranger to Alzheimer's disease. Her everyday life revolves around caring for those who suffer from the ailment.

Meyer's office is at the University of California-Davis Alzheimer's disease center in Sacramento. But her care goes beyond the clinic: Her mother was diagnosed with Alzheimer's, a progressive disease that commonly causes dementia and has no cure.

As a primary caregiver herself, the assistant adjunct professor understands the challenges, barriers and emotional burdens that come with that role — especially for newer immigrants — but are often ignored or dismissed.

One nightat around 3 a.m., Meyer was awakened by a sound in her bedroom. Someone was unplugging the night lights.

Wearing her usual black pants and a sweater as pajamas, her mother's silhouette began to register in the dark. Anh Le, 84, used to unplug the night lights, scared that the electricity would start a fire.

Another night, the garage alarm woke Meyer up. Le had wandered down to the garage, gone outside and left the door open. Meyer turned off the alarm and walked Le back to her room.

Sometimes she would have to stay outside of Le's room to make sure her lights didn't flip back on. Then she'd lie on her bed for an hour or more, taking deep breaths and scrolling through social media to try to fall asleep again to prepare for the upcoming day.

But that was when Le started showing symptoms of cognitive impairment; she was diagnosed with Alzheimer's in 2014. Two years later, Meyer was living with her mother to take better care of her.

Meyer admitted that it's stressful being her mother's primary caregiver. Even though she understands on an academic level that her mother will continue to decline, she finds it difficult to apply that knowledge to her mother's case with the emotional turmoil such a concession would entail.

"Sometimes I am proud of myself for not being snappy or short," Meyer said.

Some days the mask slips and she might be a little curt. When that happens, Meyer said she feels guilty and tries to be extra nice to her mother the next day.

"It is hard when you are dealing with it on a day-to-day basis," she said. "You are a human and it's challenging."

Sometimes, stigma drives them away from treatment and, in many cases, there are multiple caregivers taking care of one family member; conflicts can arise when they don't agree on what to do.

According to a report published by the Alzheimer's Association, most current studies on dementia among Asian subgroups are unreliable and more studies are needed to draw significant conclusions about the prevalence of Alzheimer's and other dementias in Asian-Americans and subgroups.

In 2015, Meyer published a research paper documenting the experience of Vietnamese caregivers in an attempt to help them better understand the context of the battle against Alzheimer's.

Wartime trauma is one factor that could exacerbate the effects of Alzheimer's and dementia for Vietnamese immigrants. With their long-term memories intact, Meyer noted that many care recipients repeat traumatic stories about the communist forces coming to attack Vietnam before the fall of Saigon, and running away from the bombing raids.

She wants to study whether wartime trauma, reinforced by immigrating to a new country, could make behavioral symptoms among people with dementia worsen.

She later began a six-week support program for caregivers.

"For example, caregivers can learn about the protocol when the care recipient refuses to bathe," Meyer said. They can also learn to manage stress and emotions through breathing exercises and stretching.

Information that many caregivers found useful include the Alzheimer's Association hotline and the in-home support services for low-income families to help pay for caregiving, Meyer said.

"Once they are in the safe space, they were open in sharing and the stigma is gone," she said.

Dan Truong, a Sacramento resident and a caregiver for his wife, enrolled in the program but was skeptical at first.

But he gave it a shot anyway and was glad he did.

Truong's wife of 34 years first showed symptoms of Alzheimer's, such as memory loss, in 2004, in her early 50s. Truong said he felt depressed after having to quit his job in the food industry, which he loved so much, to take care of her.

"I have an eight-hour job. How do I deal with that?" Truong said. "For a while, I would just go to work at 8, come home for an hour to have lunch with her and put her to bed, go back to work again and come home at 4. But it was killing me because who knows what she will do from 12 to 4 p.m."

"I stayed at home, but there is only so much 'Judge Judy' you can watch," he said.

Because Truong's wife developed separation anxiety, a common symptom of Alzheimer's, she tagged along wherever Truong went. He later found a job with more flexibility and placed his wife in a day care center while he works.

"There were others struggling like me," Truong said. "It's funny because you can identify the things listed [in the program] just happened to me. That was what compelled me to go back every week."

Meyer invited experts from the Alzheimer's Association and from social service groups to help with questions at the intervention and passed out cards with contact information.

For her upcoming projects, Meyer, along with principal investigator Van Ta Park from UCSF, will develop a registry for the Asian Pacific Islanders (API) in California to help researchers address the gap and disparities by studying a population that is typically left out.

Data about Asian-Americans usually lumps the subgroups of different ethnicities together, which could bury issues among subgroups that are often smaller and consist of more newer immigrants. Better detailed data would be able to guide organizations to do more effective outreach in underserved communities.

The registry will gather information from 10,000 API participants, who could be recruited to enroll in research and studies on Alzheimer's disease and related dementia.

In the meantime, Meyer is continuing to research caregivers among the API population.