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 (UC Davis), Alzheimer’s Disease Center in Sacramento, California in the United States.
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 UC Davis 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 night, it was 3am and Meyer was awakened by a sound in her bedroom – someone was unplugging the night lights. It was jarring, she recalled.
Wearing her usual black pants and a sweater as pyjamas, 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, went 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 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.
Applying her knowledge
Meyer has always been interested in mental health issues among Asian immigrants.
She even started a post-doctoral degree in 2011 at the University of California, San Francisco (UCSF), with a focus on mental health issues among Asian
But that was when Le started showing symptoms of cognitive impairment and was later diagnosed with Alzheimer’s disease 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 due to the emotional turmoil such a concession would entail.
“Sometimes I am proud of myself for not being snappy or short,” she 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 being and it’s challenging.”
Stigma and trauma
Through her research and experience as a caregiver, Meyer found that many Vietnamese elders lack knowledge about Alzheimer’s disease and wait a long time before seeking help or diagnosis.
Sometimes, stigma drives them away from treatment, and in many cases, there are multiple caregivers taking care of one family member and conflicts can arise when they don’t agree on what to do.
And they aren’t the only ones.
According to a report published this year (2020) by the US Alzheimer’s Association, most of the 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 (during the Vietnam War from 1955 to 1975), and running away from the bombing raids.
She wants to study whether wartime trauma, reinforced by immigrating to a new country, could make behavioural symptoms among people with dementia worsen.
In 2018, she published another paper that explores a culturally competent programme to help reduce stress for caregivers taking care of their Vietnamese loved ones suffering from dementia and Alzheimer’s, as well as to educate them on how to get appropriate medical care and how to deal with real-life situations as a caregiver, among other topics.
She later began a six-week support programme for caregivers based in Sacramento and San Jose.
“For example, caregivers can learn about the protocol when the care recipient refuses to bathe,” Meyer said.
They can also learn to manage their own stress and emotions through breathing exercises and stretching.
Information that many caregivers found useful include the US Alzheimer’s Association hotline and the in-home support services for low-income families to help pay for caregiving, she said.
“Once they are in the safe space, they were open in sharing and the stigma is gone,” she said.
You’re not alone
Dan Truong, a Sacramento resident and a caregiver for his wife, enrolled in the programme, but was sceptical at first.
“Why should I open my life to people who are strangers?” he recalled thinking. 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 had worked his way up in and loved so much, in order to take care of her.
“I have an eight-hour job. How do I deal with that?” he said.
“For a while, I would just go to work at 8am, come home for an hour to have lunch with her and put her to bed, go back to work again and come home at 4pm.
“But it was killing me because who knows what she will do from 12pm to 4pm.
“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 he went.
He later found a job with more flexibility and placed his wife in a day care centre while he works.
Truong said the most important realisation he came to through the programme was just knowing he isn’t alone.
“There were others struggling like me,” he said.
“It’s funny because you can identify the things listed (in the programme) just happened to me. That was what compelled me to go back every week.”
Truong made friends at the programme who helped form a support network.
One participant called him a week ago to update him about her husband and asked whether such and such symptoms happened to him or not.
They spoke on the phone for more than an hour. “It is a relief when you can talk about it,” Truong said. “The stress goes away.”
Having a translator present at the programme to provide interpretation for participants was helpful too, he said.
“There’s a learning curve to this disease because you are not prepared for it,” he said.
Meyer invited experts from the US Alzheimer’s Association and from social service groups to help with questions at the intervention and passed out cards with contact information.
“I didn’t know these places like in-home long-term care or respite care existed,” Truong said.
What keeps him going is the lucid, albeit short-lived, moment his wife has every now and then.
“Sometimes she doesn’t remember me,” he said. “She has a blank stare – she is scared of me.
“But when she realised it was me, she will squeeze my hand really hard.”
Developing a registry
For her upcoming projects, Meyer, along with principal investigator Van Ta Park from UCSF, will develop a registry for Asian Pacific Islanders (APIs) 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 newer immigrants.
Better detailed data would be able to guide organisations to do more effective outreach in underserved communities.
The registry will gather information from 10,000 API participants, who could be recruited to enrol in research and studies on Alzheimer’s disease and related dementia.
It is expected to launch next year. The US National Institute on Aging is funding the study.
It will be conducted in Cantonese, English, Mandarin, Vietnamese and Korean across Sacramento, Los Angeles and Orange counties, as well as the Bay Area.
In the meantime, Meyer is continuing to research caregivers among the API population.
“I think it is the desire to give people the support they need,” she said.
“I know how stressful it can be as caregivers and a lot of them are not aware of the services out there.” – The Sacramento Bee/Tribune News Service
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