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Raising Alzheimer's Awareness in the AAPI Community: A Journey of Compassion and Education

In this story, Lena Huang — Community Engagement Manager at Alzheimer's Association — reflects on her journey growing up with a loved one having Alzheimer’s Disease, the nonprofit world, and educational outreach. Read on to learn more about her unique upbringing, inspiring work, lettering, and perspective on reclaiming heritage!


I'm a Southern California girl at heart. I was born and raised in San Diego — been here all my life and am still here. I lived with not only my immediate family, but also my great aunt and uncle, so I had folks watching and taking care of me all the time. I think that piece was really unique in that I learned how to speak my native language. I'm really grateful for that opportunity to be able to do that. I know a lot of folks in my circumstance who never learned or never got the chance to. My parents worked really hard to give the opportunities that they didn't have to my sister and me. Even though they didn't really know what we were studying and couldn’t participate in ways other parents do, knowing that we had support from them meant a lot to them. Because my parents were busy working, my great aunt and uncle took care of my sister and me. We did pretty much everything with them at home.

At school, I liked to be a part of things; I did sports a little bit, clubs, and other things like that. It's where I met some of my best friends that I'm still friends with here in the area. I haven't changed much since my childhood. I’m hardworking, cautious, fun, easygoing — I feel like that was me and is still very much me, even after all this time.

About 20 years ago, my great aunt was diagnosed with Alzheimer’s disease. As a little kid, you don't fully understand what changes might be happening to a loved one. You don’t think there could be anything wrong with your caregiver. Looking back, especially now, I realized that when my great aunt was going through this journey, I had become a little bit like a caregiver to her. I made sure that she had her lunch, ate something, went to the bathroom, and didn't leave the house. But I didn't really understand the biological changes she was going through at the time. It was just kind of like, “Oh, okay, this is my role now.” People, especially immigrant families, just go through the motions of taking care of our loved ones because that’s what we do. That’s family. Even at the end of my great aunt’s life, my family took care of her as best as we could until she eventually went into hospice care and passed away.

It wasn’t a linear journey to me working at the Alzheimer's Association, but in a way, my path did lead me there. When I was in college, I interned at a nonprofit, and that's where I really fell in love with everything about giving back to the community and helping those who may not have access to a lot of the tools to be able to find resources. Stemming from that internship, I've been in the nonprofit world for my entire professional career. Later on, when I was looking for another role, a particular position at the Alzheimer's Association popped up. I thought it was the perfect role for me; it meshed everything that I loved together and used it to share more and reach more to the folks in our community. A big part of my role is reaching out to the AAPI community in San Diego, giving them access to resources and education about the disease, which is something that we don't talk about in our community. So, when it happens to families, not just in our community, but in all communities, it's a really hard conversation to have. I think now in this role, it brings everything into a full circle — being able to do what I love and also share my experience as well.

I specialize in educating the community about Alzheimer’s. I think that the more we talk about things, the more they come into light. It’s where we can find others who also have that kind of journey and talk about it more. The journey of a loved one having Alzheimer’s is very daunting, but communicating with others about it makes it less scary. I've talked with families all the time, and they said they had no idea what to expect. It's heartbreaking; you essentially lose your loved one twice. You lose them when they are forgetting their family and then again when they physically leave us. I think being able to prepare families with conversations — talking about how their loved one might react or respond or some of the changes that they may go through —  essentially brings all of these things to light. It’s just much more powerful to know that they’re not alone.



We also asked Ms. Huang a few other questions. Here are her answers (edited for length/clarity):


1. Could you tell me about the collaboration between the Alzheimer's Association and the Asian American with Disabilities Initiative?

It just kind of all fell into place. One of the directors wanted to leave his role, and I had actually lived in the same dorm as him in college. We reconnected on LinkedIn when I announced that I was starting my job at the Association. We had a conversation about how mental health is such a big part of the conversation today more than it's ever been before, which I think is so important to talk about — not just the physical disabilities, but also the ones that might be invisible or might not be talked about a lot. He and I met with the rest of their community engagement team, and we did a three part series two years ago now for their members — talking about what Alzheimer's is and understanding the disease itself. I think it was really impactful for them to have this conversation, especially if someone in their families, friends, or a loved ones is going through this journey. Even if one person got our helpline number, or if one person realizes, “Oh, there's resources that could help with this,” that makes the work all worthwhile for me.


2. What drew you to lettering, and how has it impacted you?

When I was a senior in college, all my friends were doing this and doing that and having these jobs and are going to grad school already, but I was not. I was not at all in that boat. I was looking for something to use to destress, something that I could do in my free time. I was always a doodler. Even when I was younger, I always loved drawing on the margins of three-ringed papers, and I also really enjoyed writing cursive physically, pen to paper. Back in college, I found a corner of social media that was all about lettering. People would post their videos or talk about their favorite pens and all of that stuff. So, I did all the research, got some notebooks and pens, and just started. I've come a long way since all those years ago when I first started lettering, and it really became a way for me to not only practice my lettering, but also have an outlet for creativity and stress relief. I've done a couple of things for friends, weddings, welcome signs, and things like that, and I especially loved making cards for folks. It became an expression of myself in being able to do that for my friends and family. When things were going crazy and overwhelming, it became a little thing that I love to do and you know. I have way too many pens and way too many you know notebooks to count, but it's something that makes me really happy. I always go back to it because you can always do something with a pen and paper. 

An aspect of our lives is finding something that you love so much and practicing it and doing it. As caregivers, it's all pretty much about our loved one or whatever it is that you're caring for, but I think one of the things that we forget sometimes to take care of ourselves too. Because if you don't, your own sanity and mental health, falls by the wayside. Caring for someone can be very stressful and draining, and if we don't fill our own buckets, there's no way that we can be there for our loved ones too. 


3. Finally, are there any other issues, projects, personal experiences, aspects of your AAPI identity, etc., that you’d like to highlight?

I've seen a lot of reclaiming of a person’s heritage or their background, not just in the AAPI community, but in others as well. I think that it’s so beautiful to want to learn more about where you came from, about a culture or language, or something that's important to their family. I think in the past, especially with immigrant families, you wanted to try to fit in and be as American as possible. You didn't want to be the “other” and draw any attention to yourself. So, you want to immerse yourself in that culture, and in a sad way, I feel like it was erasing some of their heritage. I feel like folks my age and in my position had parents who immigrated here to create a new life. Because of that, there is that pressure of “Okay, now I have to be American and have to raise my kids American because if not, they might get bullied or we might get attacked.” I am very proud to be Chinese, and I am grateful that I had the opportunity to learn our language, speak it fluently, and be able to communicate. I only have my experiences, but I think it's a really beautiful thing that I've seen more and more folks embracing more of their culture and their heritage too. 

As previously mentioned, I’m still very cautious, but I’m also being more courageous and standing up for a lot more for what I believe in, for folks who look like me, and for families who look like mine. Ever since the pandemic, it has been hard on our community, and I think being able to speak up and speak out is really important. It's a process where I think we all go through it, wanting to have a voice for those who might not feel comfortable or might not have one at all. And that is my job — to be able to have that voice for folks or be that friendly face if they need one. I think a lot of that stems from my family, and I will never be able to change what I look like and my culture, and I would never want to, but I think that piece of me will always be a part of me. I work to raise voices and raise awareness, not just about Alzheimer's and dementia, but in the world as well. There are young leaders in the workforce, in the community, so however I can play a part in that and be a piece of that is all I can work towards. I'm working and growing every day, I know that I'm definitely not perfect, and definitely don't do a lot of the things I would hope to, but I think little steps every day helps.

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