Tackling Stigma and Alzheimer’s Disease within the AAPI Community

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: On today's episode of Dementia Matters, we're going to discuss Alzheimer's disease in the Asian Americans and Pacific Islanders community. Vince Tien is CEO and co-founder of 360 Health, a multi-specialty medical group focused on telehealth services. 360 Health has been conducting COVID-19 testing and vaccinations in Orange County, California throughout the pandemic. Also with us is Dr. Dung Trinh, chief medical officer at 360 Health and also chief medical officer at Irvine Clinical Research, an independent medical research clinic in Irvine, California. Vince and Dr. Trinh are both members of the Alzheimer's Orange County Board of Directors. Thank you both for joining me on Dementia Matters.

Vince Tien: Thanks for having us here, Nathaniel.

Chin: Vince, I want to start out by asking you about your background in healthcare and how you got involved in Alzheimer's disease and dementia communities.

Tien: Yes, my background in healthcare has been in the post-acute space since 2007. We have a family-owned home, health, and hospice and house call in the Westminster area of Orange County, serving our underserved community and minorities here especially in the AAPI community. We serve over I believe 50,000 patients now in the home, health, and hospice base, house call as well. 360 Clinic was really born out of the pandemic last year in April where we had to figure out a way to keep our nurses employed. At that time during COVID, not a lot of patients wanted our nurses to come into their home, fearing getting COVID. We had a doctor friend in Arizona that was doing COVID testing for no cost. We brought that over to Orange County and we did the first event at a church. We're here local in Garden Grove, 300 tests, drive-through, first time ever doing that kind of drive-through model but very exciting at that time to be able to contribute and help give back to the community.

Chin: And let me say – thank you for saying this because it's 360 Clinic, not 360 Health. I apologize for that in the beginning. Very important work that you guys are doing, very novel at the time too. I mean as we've gone through this pandemic, the idea of a drive-through clinic doesn't seem as scary as it used to or as different but back when you were starting this really never it had never happened before.

Tien: Never happened. Basically, our model was different from any other testing outfit. We had actual clinicians on site where, like, if you have questions about your symptoms, you can get them answered by our clinicians, whereas in other testing places you just give your sample and that's it. Here our team really helped a lot of patients. Some patients were really – almost had to be admitted to the hospital and a lot of our clinicition actually suggested them to go to the hospital right away based on their condition at that time. 

Chin: So you guys are really busy, it sounds like. Not just a quick test. (laughs)

Tien: Right. We also have the telehealth for following up with positive patients as well, so we alleviate their symptoms at home rather than the necessary having to go to the emergency room or any other, stressing out the beds in the hospital back then, yeah.

Chin: So, Dr. Trinh, you've been practicing medicine in Orange County for 20 years and much of that time in academic medicine, but more recently you focused your career on medical missions work, clinical research, and several medical groups. What is your experience in caring for Alzheimer's and dementia patients?

Dr. Dung Trinh: Definitely. I wear multiple hats in the community. My love is really patient education, talking about prevention and strategies for risk reduction of Alzheimer's in the community itself. I have witnessed over the years as an internist pretty much an epidemic of Alzheimer's that we are seeing, a condition without a cure. Practicing in Orange County where many seniors are retired in the location, we've seen a significant number that have come to us on a daily basis asking for help with memory. What I've also noticed is with this pandemic, and especially with the almost 400,000 COVID tests that we've done through 360 Clinic, we've witnessed an association between COVID affecting those with dementia at a higher rate and those with dementia who catch COVID have worse outcomes, is what we have noticed and and has brought that to our attention.

Chin: It's clear that you have a lot of experience in the field, in that your response to me was what are you doing – well patient education, family education, and then this idea of risk reduction and prevention, which is exactly what this podcast addresses. Certainly we all hope for meaningful treatments and management, but obviously those are two really important things not only for individuals but for communities, which is exactly what you guys are doing with 360 Clinic. Now Dementia Matters did a little bit of research on your location in Orange County and so what we found was that there's more than 3,000,000 residents in Orange County, California and that Asian Americans and Pacific Islanders make up approximately 22% of that population. According to the Alzheimer's Orange County's website, over 84,000 people in Orange County live with Alzheimer's disease. So I have a two-part question that I'd like each of you to answer. What are the health related needs of the Asian Americans and Pacific Islanders communities? And two, when it comes to dementia or Alzheimer's disease, what are the perceptions and needs from these communities specifically?

Tien: Dr. Trinh?

Trinh: Sure! I think specifically the gaps that we see in the Asian American minority in Orange County is a gap of trust in the system. In the typical system, let's say, an older Vietnamese patient in their seventies or eighties wouldn't necessarily go to a Kaiser because they, for example, don't even know how to log in – right? – to their system or to access the technology required to be able to access healthcare. The other issue is a language barrier. The lack of trust really is due to a language barrier when your primary language is Vietnamese and your doctor speaks only English. That has resulted in Vietnamese patients either seeing only Vietnamese doctors, which – who speak English, or not seeing a doctor at all. Just asking their neighbors, their family and trying to take care of what they can at home, which leads to gaps in healthcare, lack of preventive health, lack of colonoscopies and mammograms and things of that sort. It's a big concern.

Chin: And then, when it comes specifically to things like cognition or thinking ability and dementia and Alzheimer's disease, is there a certain perception or thought to the Asian American community? I'm looking at you, Dr. Trinh, because I'm going to move to Vince afterwards.

Trinh: 100% yes, 100%. I'm not sure the word Alzheimer's even exists in Vietnam. It's – in many third world countries, it's just an assumption – you get older, you know, you're losing your memory, it’s normal. The unfortunate thing is that it's not normal. We know that the loss of cognition is contributed by, you know, the Alzheimer's plaque, by all the factors that lead to beta amyloid production, which includes circulation problems, inflammation problems, toxins, all these multiple factors that contribute to that. A huge gap is bringing awareness of the fact that memory loss is not normal. Memory loss should be addressed. That includes, you know, cognitive testing, whether it's the MMSE tests or any type of cognitive testing by a physician, and that, thirdly, we can do something about it with lifestyle changes, nutrition, diet, things of that sort.

Chin: So Vince, you're free to answer either of those two questions. It's a bit easier for you because Dr. Trinh took the first stab at it. I am going to make it a bit harder for you because here Dr. Trinh is saying, well technology is an issue and being able to have people comfortable accessing healthcare via an online system, but here you are, Vince, part of a telehealth organization – right? – and really thriving and promoting telemedicine. How do you find common ground there?

Tien: Yeah. I think, for us with telehealth – COVID really is the catalyst for telehealth as we know, right? So a lot of seniors now, even Dr. Trinh is experiencing that, they're going through – they're readily available to get on Zoom now, to watch health talks, and to do this and that that before last year or two years ago, not a lot of seniors know that, right? I think because of this – I mean I tend to look at things like glass half-full, right? So even though we have a pandemic and a lot of people passed away and stuff, I think I like to see it positive that we're preparing the seniors and people that are coming in after, like even my parents are in their sixties. Now they're very easy to use FaceTime or Zoom like that. Just getting that education and that trust out that looks like, if you cannot come to the doctor or if you cannot come to get a diagnosis, the doctor can still visit you in the home or through the device of technology that we have today. I think also the other things that Dr. Trinh mentioned like language barriers, cultural stigma, and stuff like that. Recently I'm so driven to join Alzheimer OC; my dad has been recently diagnosed with FTD, so frontotemporal dementia. I'd kind of been in denial about it until I took him to the doctor's office, finally. Then, you know, the doctor asked him, ‘Write the clock time,’ and, “What does 10:20 look like, or what is 11:30 look like?” For him to have a time like – a difficult time like that, you know, finally hit me. So that's why I really want to acknowledge that, again, like in our culture we don't even have a word for dementia or Alzheimer’s. You always say – a senior that's losing or that's forgetting something, ‘Oh they're getting old,’ or this and that, but my dad's even – he’s barely at 65 . He's just getting his medical care benefits now and he's too young for that, right? Still FTD hits you like even at a younger age, yeah, earlier than other Alzheimer's and dementias. Really, it’s through support that – you know, the reason that we're doing all these podcasts and coming on these shows is that hopefully that someone in policy, a decision maker, can see this and maybe pass some kind of bill to help the caregivers and the family that's in need with that support, because for the patient it's hard to see how much their family is going through because most of the time they're not there. You know, for my mom I see her all the time and sometimes she just needs a little help, even a little respite care or some kind of a place where, maybe like, as my dad's condition get worse, he can go there for during the daytime, like adult daycare for a couple hours. Then that can provide my mom respite care during the day so she can have a little breathing, little relaxation time and not worry about my dad or where he's at right now because even if I tell my mom, ‘Hey go see a new movie or whatever it is,’ she can't leave my dad at home. She has that feeling, yeah.

Chin: Well, Vince, thank you for sharing that personal story. I think that, you know, that's an important thing for our audience members to know, that personal connection for you. It's good to get that information out but you really touched on my next question, which I think is a really key topic within the field of Alzheimer's disease and that – one is education. Sure that's important, especially in a culture that doesn't actually have a word for dementia, but two is stigma. You use that word very clearly and you describe that sensation of denial because of stigma. What role does stigma play in the Asian American or Vietnamese communities specifically when it comes to Alzheimer's disease? How does that affect care? How does that affect family members?

Tien: I think it goes across not just only the dementia but also other medical issues. Our community is hard to kind of open up because the stigma is that we don't want to be looked down or frowned upon by our family or our neighbors and stuff, etc, and that oh, you have someone that has a medical condition like this. It makes it very hard for us to be open about it. Then if we cannot be open about it, there's no way that we can get help. There's no way that there's enough data to be gathered on people with different ethnic and to be studied. So I feel like the more that the predecessors can talk about it, I think it can be more open and studied and help people in the later future as well..

Chin: I appreciate you also mentioning the importance of being in research. We need more Asian Americans and Pacific islanders in our Alzheimer's research, our aging research, so that is another key component other than just – not just but other than clinical care. 

Tien: Right.

Chin: So, Dr. Trinh, for you how do we start destigmatizing Alzheimer's disease, dementia, cognitive change within the Asian American community?

Trinh: I think education is probably the biggest factor to let folks know that this condition exists and that this condition is no different than heart disease, cancer, diabetes. It is a health condition that needs to be screened for on a yearly basis among those who are older. If we do detect an issue then we should evaluate and do what we can to, again, minimize the risk, identify what the risk factors are to tackle those risk factors, and if possible to either stop or slow down. Many issues with memory loss aren't Alzheimer's. Oftentimes it could be hypothyroidism or vitamin B12 deficiency or, you know, medication side effects that can be contributing to memory loss. So until that gets worked up, we don't know what's reversible, what's not reversible. Bringing that to the community, whether it’s through lectures, television, radio, podcasts, and bringing it in the Vietnamese language where folks understand is super important. I noticed that those who – our parents – if Vietnamese is their primary language, that's all they listen to whether it's radio, TV. It's on in Vietnamese and unless that information is in those channels, you know, people don't hear about it.

Chin: I'm so glad you said that too because I'm wondering as I'm listening to your responses and the need for education, the need for healthcare, the need for access, how does healthcare actually address this cultural, economical, linguistic barrier in delivering public health messages as well as care to people in the Asian American community? I'll start with you Dr. Trinh.

Trinh: It's not addressed very well. (laughs) How's that? There are huge gaps. It is addressed among, you know, Vietnamese physicians, maybe speaking and letting Vietnamese patients know. Again there are large gaps that exist today. A lot of Vietnamese don't go out to get a pap smear or, you know, a colonoscopy or a mammogram because what we value in our preventive health practices today is not necessarily translated over to the Vietnamese community through those communication channels – right? – through television or radio and things of that sort. So it's a huge gap that we need to tackle. It's very doable. We need a plan, we need funding, and partnership with the local healthcare organizations to do that.

Chin: Now, Vince, knowing your role within 360 Clinic, how can healthcare systems, how can organizations provide care for under-resourced and underrepresented families who are suffering from dementia-related illnesses? Maybe not even the dementia itself, but maybe the screenings – the healthcare screenings or even, you know, within that umbrella of getting older.

Tien: Yeah. I think with the screenings, definitely it's a must. If we also can focus on the mental health of the caregiver as well because, and to provide them. I was on another podcast yesterday; we were thinking maybe even tax credit or something like that to offset the caregivers’, you know, tax liability at the end of a year just to help them with small things like that, or even if somehow we can get funding for adult day care to take care of a patient for during the day, just for four hours to give them maybe a bath, give them a food, or give them some kind of education and training where the family doesn't have to be responsible at home and they still, in their mind, they still know it's taken care of for their family member. I think just a little bit of things like that can help, even filling out a POLST form – filling out that, having a lawyer or attorney on site to help with the paperwork for financial just in case. For example, my father, he can't, you know – after a while he cannot get into his bank account anymore, right? He can't pay the bills, all that stuff, and all the paperwork that needs to be done. I had to submit a paper to social security and do all the due diligence to make sure he can get, you know, disability and all that kind of stuff. I think it can help out a lot. As I go through this path of my father, and for my mother as well, I'm learning a lot and I think there's a lot that can be done for people in my younger generation. Hopefully it makes a big enough impact for the other seniors to later down the road.

Chin: And for our audience members that aren't living in California or those states that have POLST forms – P O L S T – that's really a healthcare power of attorney or an advanced directive. I mean, I'm so grateful you said that because advanced care planning is so critical for all of us regardless of our background, knowing that we all somehow engage with the healthcare system and the state system and having that in place. What you're really saying is It isn't always just medical related. It is all these other logistical administrative steps that are so important in sort of accessing care, managing care, and figuring out how we live our lives with certain conditions. I'm going to put you on the spot, each of you. I want one answer from each of you and this is tough, but what is needed today? What would be the one thing that you would want to help the Asian American community, or any sort of disenfranchised group, when it comes to Alzheimer's disease, dementia, and getting older? What is something that is needed that we really should be striving for right now? Because I already picked on you Dr. Trinh, Vince I'm going to go to you first. What is your one thing that you would really want or that you think is the next thing that will lead to more growth?

Tien: I believe that maybe even some kind of forum or some kind of group where everyone can be able freely, especially in the AAPI community, to speak out and kind of give your, “Oh, this happened to my dad. This is what I had to do.” So something to relate on, like someone that his family is maybe not well off, they can find a Facebook group or the forum and then they can read about it, instead of going everywhere and like ‘what should I do next?’ You know, I think it takes a community to help out and as we open up and we talk about it, you'll see like, ‘Oh wow I didn't know my neighbor has it. I didn't know my cousin's friend had it,’ or something like that. Then you find someone, kind of like a support group, and really just kind of lean on each other for guidance and throughout this kind of path that we're on now.

Chin: Which would also take away some of the stigma, if people started talking about it more publicly and openly. 

Tien: Exactly. Yeah, yeah.

Chin: Okay all right, Dr. Trinh, that's a tough one to follow. So what would be the thing that you would want?

Trinh: Yeah, I absolutely agree with Vince. The need to start a dialogue with families through a – kind of pretty much a support group type setting that is run by folks who speak Vietnamese, who have been trained in dementia care, and trained not just to address patient care but the caregiver care as well, right? So that's probably a relatively low hanging fruit that can be started, f we were able to find a forum to conduct these support groups and a way to let folks know or to market the fact that these support groups exist, that you can just come out and share your experiences with healthcare specialists in the field that speak vietnamese. Through there we can – as far as next steps, we can offer cognitive assessments, perhaps in Vietnamese. Perhaps in Vietnamese. Not necessarily the English version of these MMSEs where folks won't understand, but these assessments need to be translated and verified and validated in Vietnamese so that we can take the next step for treatment.

Chin: Both of you, well said. Thank you very much for that. I know that was a tough question to put you on the spot with but I think you both had very important points and so I want to thank you for being on our podcast, Dementia Matters, today, for the work that you're doing, the message that you're trying to get out. I really hope 360 Clinic succeeds and you guys are able to continue to do the good work that you're doing. In the future, we hope to have you back on.

Tien: All right, thank you so much, Doctor. Have a good one, take care.

Trinh: Thanks so much. Take care now.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.