Asian Americans are currently underrepresented in Alzheimer’s research. That’s why UCSF’s Dr. Van Ta Park is working to improve brain health equity through education, outreach, and research involvement.
This article is part of the Diversity & Dementia series, produced by Being Patient with support provided by Eisai.
Research and clinical trials for Alzheimer’s disease often include few people of color, including the Asian American and Native Hawaiian/Pacific Islander (AANHPI) population, which is why many advocates are arguing for greater diversity in clinical trials. And for immigrant populations, access to healthcare and education in their native language can be limited. These imbalances mean inequity in brain health.
That’s why researchers like the University of California, San Francisco’s Dr. Van Ta Park are working with immigrant communities to inspire more Asian American, Native Hawaiian, and Pacific Islander people to get involved in research. Her research — including studies like the Asian Cohort for Alzheimer’s Disease (ACAD) project — focuses on addressing issues related to racial and ethnic minority health and healthcare disparities.
In particular, Park focuses on teaching caregivers and people living with dementia about getting involved in research and about Alzheimer’s disease in their communities. Many of the programs she works on focus on caregiver education and support, even scenes from Korean drama TV and film (this genre is referred to below as K-dramas) to help spur conversations around aging and mental health.
“I had so many participants in the K-drama studies share very deep-level stories and sensitive things about caring for their loved ones with Alzheimer’s or experiencing mental health distress,” Park told Being Patient in a recent Live Talk conversation. For her, using clips of K-drama episodes helps to de-stigmatize cognitive decline and “normalize the conversation about these topics.”
Park is a University of California, San Francisco School of Nursing professor in the Department of Community Health Systems. She is the founder and Contact MPI for the NIA-funded Collaborative Approach for AANHPI Research & Education (CARE), which has an extensive recruitment registry of more than 10,000 AANHPI adults interested in participating in potential dementia and caregiving research. And, she’s actively working on the Asian Americans and Racism: Individual and Structural Experiences (ARISE) and Koreans Invested in Making Caregivers Health Important (KIMCHI) studies.
Park joined Being Patient’s Mark Niu in a discussion on her various research projects focused on the Asian American community and the importance of improving diversity in research.
Read excerpts below or watch the full conversation below.
Being Patient: What is the Asian Cohort for Alzheimer’s Disease (ACAD) study focused on?
Dr. Van Ta Park: ACAD is a cohort study that comprises Asian Americans and Asian Canadians who are 65 years and older. We are looking at genetics, [at] both genetics and non-genetic factors, and the association of those factors with risk for Alzheimer’s disease.
We are trying to understand this area of research better because there’s limited knowledge and data about this for these respective populations, so we can potentially use what we find. Not just us, of course, [for] other researchers to better design and research diagnostics, treatments, care programs, and services for populations that are, unfortunately, typically underrepresented in research and culturally appropriate programs.
Being Patient: We’re talking about quite a huge disparity, right? The Asian American population is one of the fastest growing in this country, yet it is a minuscule representation.
Park: Asian Americans are the fastest-growing racial group in the United States and comprise nearly eight percent of the population. Research has shown that in the past 25-plus years, less than one percent and .17 percent of research that’s supported by the NIH, where their total budget, has gone to Asian Americans, Native Hawaiians, and Pacific Islanders.
Whichever way you slice the data, it’s pretty terrible and sad. Asian Americans and Asian Canadians are severely underrepresented, even in Alzheimer’s disease research, it’s about less than a percent in research.
“Asian Americans and Asian Canadians are
severely underrepresented, even in Alzheimer’s
disease research, it’s about less than a percent in research.”
Being Patient: You’re also involved in the Collaborative Approach for AANHPI Research & Education (CARE) at UCSF. Tell us about that.
Park: CARE began because of this really severe disparity in representation in research. We and I, and [by] “we” [I mean] both academic and very diverse community partners, wanted to create a research recruitment registry that is multilingual.
We have many languages where we provide the necessary education, engagement, and outreach about: What is research? Why is it important to participate in research? Why is it important to have a voice in research? [We also talk about] the impact down the line on program services and CARE, not just for yourself, but for generations to come.
By enrolling in care, you are essentially saying, “I am interested [in] learning about potential research opportunities.” We have more than 10,000 people in CARE enrolled already, more than 80 percent of whom have never participated in research before.
Being Patient: You come from a Vietnamese and Chinese background and work with the Vietnamese population a great deal. Could you tell us about some of those projects?
Park: We have so many, but a couple come to mind. One is a Vietnamese dementia caregiving program called Our Family Journey, one of the first in the country; we culturally and linguistically tailor evidence-based caregiving programs for Vietnamese-American dementia caregivers.
We talk about what to expect, what is normal, what are the resources, and things like that. That program went very well, and it was a pilot study actually funded by the Alzheimer’s Association. We hope to be able to make it bigger and better in the near future.
Then there’s another study that is funded by the NIH, where I am a site principal investigator. The PI is at UC Davis, Wayne Meyer, and it’s called VIP, Vietnamese Insights into Cognitive Aging Program. It’s the first of its kind, longitudinal study that is looking at early life adversity, experience with trauma, stress, etc, and how those factors, if they [would] be risk and or resilience factors in terms of the risk for cognitive decline, including, of course, dementia. That is a study that includes older Vietnamese Americans, almost all of who prefer or are monolingual in Vietnamese in Northern California,
Being Patient: I imagine that’s very dear to your heart, you yourself being a refugee from Vietnam, Tell me about trauma and its impact. What are some things that have emerged so far that you’ve observed?
Park: We are in the midst of our recruitment and trying to do some data analysis. However, what we’ve seen and heard from the participants are really, unfortunately, traumatic stories. Almost all of them, if not all of them, have something traumatic to share in terms of both the trauma when they lived in Vietnam during the war, the aftermath of the war, the journey here, and the experiences and adversities trying to acculturate to American society.
What we’re thinking is that it is quite possible that all these traumatic experiences related to the war as well as related to acculturation, if you will, or trying to get assimilated here in the US, could play a role in our cognition and our risk for dementia. That is what we’re thinking.
Being Patient: In terms of trauma, those memories are not typically forgotten. What have you found so far about memory and trauma?
Park: As we know, with Alzheimer’s disease and early dementia, it’s more common to first lose your short-term memory than it is your long-term. This being embedded in long-term memories, it could be something important for us to examine in more depth. Whether it be, again, where we don’t know, are these risk factors for cognitive decline and/or how do Vietnamese Americans live?
“What we’re thinking is that it is
quite possible that all these traumatic
experiences related to the war
as well as… trying to get assimilated
here in the U.S., could play a role in
our cognition and our
risk for dementia”
Not just survive but live and do well and prosper. So, to what extent are certain factors associated with resilience? That’s important to know too. Collectivism is in our cultures. Many Asian cultures share that, you know, having a collectivist kind of society and social support [and] family values.
Being Patient: In this study, and perhaps in some of the others involved, what are some of the cultural obstacles you face in dealing with Asian populations? Are there any particular things that you’ve observed?
Park: One thing that comes to mind is when we were recruiting for Our Family Journey, which is the Vietnamese dementia caregiving program. We actually had a great interest, which is fabulous. Then when we contacted some of the interested or potential participants back, some did change their mind, and we asked them why. Oftentimes, what we heard was, “Well, once they talked to their family about joining this research study, they were told not to join.”
They were told not to join because they didn’t want to make it appear as if they were complaining or stressed out about caring for their loved ones because it’s so ingrained in our culture that we are caring for our loved ones because we love them.
What we try to explain to these individuals is that by participating in this program or similar programs, you are actually helping your family because you’re helping yourself better understand how to care for them. In the long run, that will only help your whole family unit, not just the care recipient.
Being Patient: Were some participants receptive to that explanation?
Park: Some of them were, but I think, like many things, things take time, especially when it’s one of the first or few kinds of programs that exist in the country, right? It’s a topic that unfortunately carries a lot of stigma, mostly because of the unknown, the unfamiliarity with Alzheimer’s disease and related dementias. Some of them were able to understand how it could potentially be helpful.
“What we try to explain to these individuals is
that by participating in this program or similar
programs, you are actually helping your family
because you’re helping yourself better
understand how to care for them.”
Being Patient: Did you have any other difficulties, such as with cognitive tests?
Park: What we’ve learned in the past several years, and this is why we have such studies now as ACAD and VIP, is that we do have very limited available, culturally, linguistically appropriate cognitive tools in the languages, and also taking into account where the study is being done, for example, in the US versus a country in Asia.
You have to consider the environment, the sociopolitical environment, and what kind of terminology is more common in Asia, for example, than here. There are some sensitivities to that as well, and so the limited availability of such tools really hinders research and the advancement of research for Asian Americans and Asian Canadians.
Being Patient: Did you have any difficulty with some in the Asian American community believing cognitive changes were a part of normal aging, not something abnormal?
Park: It’s very unfortunately common for many individuals and communities to think it’s a normal part of aging and or that [it] just comes with old age when their behavior is like this or like that. It’s unfortunately part of the cycle of stigma and lack of resources [that are] in their language and readily available in their community. So people, unfortunately, just don’t know.
“You have to consider the environment, the
sociopolitical environment, and what kind of
terminology is more common in
Asia, for example, than here.”
Being Patient: Your father was diagnosed with Alzheimer’s several years ago. Are you seeing some of the same issues you’re directly dealing with in your work with the community?
Park: I am. It is challenging because not just my father but many people I know who actually work with me, also in research, and they’re caregivers as well. Because of the lack of knowledge in our communities, as well as the lack of available, validated cognitive tools in the language, the lack of medical care professionals who speak the language who do this work as well— there are a lot of people who feel, “What’s the point,” for example, of getting diagnosed to, “I don’t know if it’s really a diagnosis.” That is something that, even within my own family, we are experiencing.
Being Patient: You’re also working with the Korean American community too. Tell me about some of the programs you have for the Korean American community.
Park: We have a couple of different programs. One is actually called KIMCHI, Koreans Invested in Making Caregivers Health Important, and it’s a program that we provide. We culturally and linguistically tailor evidence-based research for Korean Americans, in Korean, about dementia caregiving, Alzheimer’s disease, advanced directives, and other aging-related issues. We already finished our two-year program for that, and just recently got two more years of funding to support that.
We also have another study that is not just for Koreans but sounds like it is just for Koreans. I term it my K-drama studies. I’ve done a variety of K-drama small-scale studies.
Being Patient: What’s the connection between K-dramas and education around Alzheimer’s disease?
Park: It’s important to provide a little context. It all started when I was trying to think about a population-level, non-invasive educational tool for Asian Americans. Given the heterogeneity of Asian Americans in languages, cultures, etc, I was trying to find something similar that is available in a Spanish-speaking community called telenovela.
So, I started to watch a lot of Korean dramas, or K-dramas, and became an avid addict or a fan. What I realized was, well, what if we take some scenes from different Korean dramas that might be able to relay a particular message on health message and/or open the topic that we would like for people to start talking about, such as Alzheimer’s disease, caregiving, advanced directives, help-seeking, mental health, depression, anxiety, etc?
So, instead of having people inviting the community to come to learn more about mental health or Alzheimer’s disease, like a regular kind of workshop, [versus] where you market it as joining a K-drama and learning more about different health topics. People were interested in that, and thought it was a very innovative approach to allow people to talk about topics that they normally would not talk about.
I had so many participants in the K-drama studies share very deep-level stories and sensitive things about, caring for their loved ones with Alzheimer’s or experiencing mental health distress, or having family members [with] mental health distress. What does that all mean? What can you do to reduce misunderstandings about these health topics? Again, [this helps] to de-stigmatize it, helping to normalize the conversation about these topics, so the use of K-drama was very well received.
“Given the heterogeneity of Asian Americans in
languages, cultures, etc, I was trying to find
something similar that is available in a
Spanish-speaking community called telenovela.”
Being Patient: Are there enough K-drama scenes relating to cognitive health issues?
Park: Actually, a lot of K-dramas have either Alzheimer’s disease or dementia as a main theme or on the side. You can pick out those scenes, show the clip to your K-drama workshop participants, and ask for people to then react to it. “What did you think?”
It’s this idea of what the story is and what your educational intervention is, right? [This is] what you normally do without K-drama, but then you identify the scenes and try [incorporating] them into your workshop and conversation.
Being Patient: Is there a piece of advice that you’ve come across or learned in your own journey that you’d like to share with our audience?
Park: It’s something I tell myself for sure. This is a journey of learning [about this]. It’s one thing from before this experience with my father that I learned, seeing it on paper, rights, meeting community members, but to live it is very different. But [I would recommend] trying to be open and asking questions, whether it be your doctor, your colleague or friend, or whoever you know that might have those kinds of experiences already and knowledge. It’s okay to get help. It’s okay to say, “I don’t know how to take care of someone when it’s like this. What can we do together?”
Katy Koop is a writer and theater artist based in Raleigh, NC.
