When former singer and university fundraiser Myra Garcia began experiencing early signs of Alzheimer’s, she was initially misdiagnosed with ADD. Now, as an Alzheimer’s advocate, she’s lending her voice to improve education and care in the Latino community.
This article is part of the Diversity & Dementia series, produced by Being Patient with support provided by Eisai.
Latino and Hispanic populations have a high risk for Alzheimer’s, yet the population is not often represented in clinical trials. With early onset Alzheimer’s rates rising over the last couple of years, more advocates are working to improve diagnosis, care, and research participation.
One such advocate, Myra Garcia, had an early experience with Alzheimer’s in her own Cuban immigrant family when she was still performing as a singer. Visiting family members in Miami, she found that one of her aunts and her cousin, who lived together, were evicted because her aunt had forgotten to pay homeowner’s association fees. Another aunt, she learned from another family member, had also started showing symptoms of Alzheimer’s.
“They were wonderful women and just joyful and fun to be with— then to see them just get worse and worse and worse as time goes on. It was scary,” Garcia explained, “I’m sure that it’s because of my two aunts, that I had it always in the back of my head, that eventually I might have that.”
When she started experiencing cognition problems while working in fundraising at the University of La Verne, she was concerned about her Alzheimer’s risk. Yet, she was diagnosed with attention deficit disorder (ADD). After continued memory issues, she was finally able to see a neuropsychiatrist. After a day-long cognitive testing and review of her medical records, Garcia was finally diagnosed with early-onset Alzheimer’s in 2020.
Now retired, Garcia served on the 2022-2023 Early Stage Advisory Group and continues to advocate for people like her. As the daughter of Cuban immigrants, she also focuses on education and outreach in the Latino community. She also volunteers at a senior memory care center, sings in three choirs, and remains physically and socially active. Garcia also participated in the donanemab clinical trial and continues to get the drug.
In a conversation with Being Patient video journalist Mark Niu, Garcia discussed her experience with diagnosis and how she lends her voice towards advocacy in the Latino community. Read or watch the conversation below.
Being Patient: Tell us about your background.
Myra Garcia: I’m the daughter of Cuban immigrants. I guess [we were] the first group of people coming over from Cuba to the US. My sister was born in Cuba, but I was born in the US. In fact, I was born on the fourth of July, and I always thought that that was a really great birthday. My parents did not speak any English.
Fortunately, it wasn’t just my parents, but it was my aunts and uncles. They all came over to the US, and we had this really beautiful, huge family all together, living very close to each other. Having wonderful food, just enjoying each other, and going to church together. It was a lovely place to be.
Being Patient: You had a career as a singer before transitioning to academia. Tell us about the role of music in your life.
Garcia: Yes, my mother and her sisters— they all sang. It’s kind of funny, but I thought that everybody could sing, so I didn’t think that it was anything special. I started piano lessons at seven. My music teacher in high school was testing everybody to make sure that they could be a part of the group. When it was my turn, she said that from that moment on, she was going to be my voice teacher and my piano teacher.
That doesn’t happen very often, if at all. It was an amazing experience. Again, everybody in my family could sing, so I didn’t think it was anything special. So, I learned that it was actually something quite special.
“My mother and her sisters— they all sang. It’s kind of funny, but
I thought that everybody could sing, so
I didn’t think that it was anything special.”
When I went to college, I majored in voice, and I had to study all of the languages. I studied Spanish first, then French, and then German and Italian. That was my life. I had a musical education and had opportunities to perform.
Being Patient: Later, you transitioned from performing full-time to working at the University of La Verne in California. Tell us about that.
Garcia: Yes, I realized that I needed to do something different. I found schoolwork to be very, very enjoyable. I was called to be the person who takes care of the donors and [helps] to do all sorts of things like that.
As I was going deeper and deeper into this experience and what was absolutely lovely was all of those opportunities that I had to sing and perform and still work. That was always very lovely and something I enjoyed tremendously.
Being Patient: During this time as a Vice President at the University of La Verne, you started noticing signs of Alzheimer’s disease. What was that like, and how old were you then?
Garcia: It was maybe the second year I was at the University of La Verne. I have trouble with numbers, so I can’t tell you exactly, but I was probably in my early 40s. This was a great experience because I had the opportunity to work with the person who became the President of the University of La Verne.
“The first couple of years went really well; then
things started to go a little bit south. I was
having trouble with numbers [and]
remembering people’s names.”
The first couple of years went really well; then things started to go a little bit south. I was having trouble with numbers [and] remembering people’s names. When [the COVID-19 pandemic] came, I lost my opportunities to be at that organization at all. I was let go. I went to the San Diego Symphony Orchestra, and I was hired as a Vice President as well, but that only lasted about three months. I had to resign because I just couldn’t do the work.
Being Patient: Was using technology difficult for you?
Garcia: Technology was so difficult, and it continues to be difficult for me. It was particularly difficult because it was [COVID-19] time, so everything was just so different. It was painful. Then I went to another location. I [also] went to a community care organization and was vice president there. Again, that lasted maybe three weeks, and I had to resign because I couldn’t do the work.
Being Patient: Tell us about your experience seeking a diagnosis. How did you begin to seek help?
Garcia: When I was at the university, I knew something was not right. I thought it was Alzheimer’s disease, but I went to doctors many, many times, and they all said, “You are fine.” There was one doctor who did a whole bunch of testing, and at the end of the day, she says, “What you have is ADD.” When I was told [it was] ADD, I will tell you I burst into tears of joy because it was not Alzheimer’s, and so I was on those drugs for a number of years. Then, that’s when [COVID-19] came along.
“When I was told [it was] ADD, I will tell you
I burst into tears of joy because it was not Alzheimer’s”
Being Patient: Did the ADD drugs you were prescribed have any effect?
Garcia: It seemed like it was working fine, but ultimately it really wasn’t. I [went to] so many doctors, and they kept giving me just very, very simple questions and I could do those. Because I could do those, they would say, “Oh, you’re fine, go away.”
[They] were simple tests. It might be a numbers test, drawing a picture, or very simple things like that. I could do those. I was still driving. It wasn’t until [COVID-19] that I went to San Diego. I realized, “Oh my gosh, this is not working.” I found a neuropsychiatrist, and that was the beginning of my new me.
Being Patient: Did the neuropsychiatrist give you tests different from the other doctors you saw? Or how did they determine your diagnosis?
Garcia: She did not know what was wrong at the beginning, but we did eight hours of testing in one day. That was really something. It was very difficult. There were many things that I couldn’t figure out, and so it was after that testing process I was told that I had early-stage Alzheimer’s disease.
Being Patient: What cognitive tests did she give you over those eight hours?
Garcia: She [would] have a picture of different animals, but the colors are different, and it might be an elephant or a giraffe. [She would ask,] “What’s the name of this animal?” It’s kind of like a trick because you would have different colors, sometimes different dots, and all sorts of stuff like that. I totally bombed it. It was terrible.
At lunchtime, she said, “Go to this part of [the building], and then when you’re finished with lunch, come back and we’ll continue.” I didn’t pick up on the “then come back,” so I sat there waiting for my neurologist to come and look for me. She had to look for me because I didn’t understand what she had asked me to do.
After we did all of that testing, she said, “Okay, let’s meet again in the next few weeks.” Because she wanted to get really into the weeds, if you will, she said, “Come back with your husband.” We went to see her, and then that’s when she gave me the diagnosis. [She also gave] the idea that I should [do] a clinical trial.
Being Patient: When you got that diagnosis of Alzheimer’s disease, what was going through your mind?
Garcia: Oh, I was thrilled. I was expecting it. I had been expecting this, starting from my aunts and [going through] all of the crazy things that were happening in my life. It was like such a burden had been released because I knew something was wrong. All of my doctors said I was fine. Finally, I had the diagnosis that I had been expecting for a long time. It was just wonderful.
“It was like such a burden had been released because I knew something was wrong. All of my doctors said I was fine. Finally, I had the diagnosis that I had been expecting for a long time. It was just wonderful.”
Being Patient: Did your aunts have Alzheimer’s disease? Tell us about your family history with the disease.
Garcia: I’m just so grateful that my mother did not have it. My mother’s two sisters had it. I guess that was the first inkling that I had about this disease. I didn’t dwell on it or anything like that. I was busy with my music life, enjoying that, traveling across the country, and performing in so many different fabulous venues.
Being Patient: Were they ever formally diagnosed?
Garcia: No, they really weren’t. One of the aunts that I spoke about, who had difficulty at her home, didn’t get the care that she needed, but my other aunt, her daughter, mentioned that there was something called Alzheimer’s, and that was the very first moment that I learned about that disease.
My older aunt, she was living with her daughter and grandchildren and all of that, so she was in good hands, but my other aunt lived alone. She was a widow. She lived alone with my cousin, who is a special needs person.
That’s a terrible connection, because neither one of them understood what it meant to be in a condo, and so they stopped paying their [homeowner’s] association fees. They stopped bathing. Everything was a mess in their home, and I was just visiting, because I was on a work trip.
I went over here to Miami, and it was horrendous. [After that], my cousin went to a special needs location but my aunt was taken care of by her mother.
Being Patient: What happened with the Homeowner’s Association fees? Can you tell us more about that?
Garcia: She hadn’t [paid.] She didn’t know what was going on. She just knew that things were not right, or maybe she didn’t even know that. If her husband had been there, he would have been able to take care of all those things, but he had passed by that time. Neither my aunt nor my cousin understood what was going on, and it was a sad situation to have all of your possessions thrown down on the street. It was just horrendous.
Being Patient: You’ve done a lot of work advocating for Alzheimer’s education for Latino and other minority communities. Tell us why that’s important to you.
Garcia: The story of my aunts is why I feel this way. They were wonderful women and just joyful and fun to be with— then to see them just get worse and worse and worse as time goes on. It was scary. I’m sure that it’s because of my two aunts that I had it all always in the back of my head, that eventually I might have that.
Being Patient: Tell us how you use your background in singing with your advocacy work.
Garcia: I sing in several choirs, [including] my church choir and [in a choir] at a continuing care organization nearby. Part of it is that there [are] people [in the choir] with cognitive problems. They don’t remember me from week to week, and I go every week, and we sing together.
“The power of music is something that is essential
in my life, and I hope in many other people’s lives.”
I thought that they might want some opera, Spanish music, or different kinds of things like that, and they didn’t connect with that. Then I said, “Well, how about some kids’ songs?” We started with a bunch of children’s songs, and they love it. They find it just fun, and they laugh. They know it’s silly that [they’re] children’s songs, but they know all the words.
It breaks my heart that these folks have to deal with this, but at the same time, it’s wonderful that they enjoy the music as I do. The power of music is something that is essential in my life, and I hope in many other people’s lives.
Being Patient: Tell me about your outreach work with the Latino community as an Alzheimer’s advocate.
Garcia: I’m very active, as I mentioned, with the Alzheimer’s Association. From time to time, I have an opportunity to speak in Spanish. They’re always very, very grateful because they’re struggling too. This odd disease that is here—it’s hurting the country and hurting all these folks.
There’s so many people with this disease in the world, so I really appreciate being able to speak in Spanish to folks. I had an opportunity to go to the New York area and give a talk in Spanish. Things like that really mean a lot to me because that is part of my heritage. I know that a lot of folks don’t necessarily know about this disease and so I try to help people understand what it’s all about.
“There’s so many people with this disease in
the world, so I really appreciate being
able to speak in Spanish to folks.”
Being Patient: Do you think it’s more difficult for people in Latino communities to get diagnosis and care?
Garcia: [When I talked to my] GP and several GPs, I knew something was not right, and they either didn’t understand the disease or they didn’t want to accept it because I can speak, I can drive, et cetera. I wouldn’t be surprised if that happens to many other Latino people who [are] just seen [at] face value, and they don’t understand, necessarily, what is going on in the brain.
Katy Koop is a writer and theater artist in Raleigh, NC.