Alzheimer’s advocate LuPita Gutierrez-Parker on her journey with early-onset Alzheimer's and her work to break down stigma in the Latino community.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
Despite being underrepresented in clinical trials, Latinos are one-and-a-half times as likely as white Americans to develop Alzheimer’s disease. In addition, several majority Latino counties in the U.S. were included in a list of the top 10 highest Alzheimer’s risk counties in the nation, where one in six residents develops Alzheimer’s within their lifetime.
For LuPita Gutierrez-Parker, who was first diagnosed with MCI at 61 which developed into early-onset Alzheimer’s just a year later, addressing stigma in the Latino community by sharing her story is deeply important. Previously working in college admissions, she takes her experience speaking to students to advocate for education and outreach, working with her local Alzheimer’s Association to fight for better access to care and support her peers in living their best lives with Alzheimer’s.
With her mother and father both being diagnosed with dementia before they passed away in their 80s, Gutierrez-Parker is the only one of her six siblings living with Alzheimer’s. She has two daughters in their 30s, one of whom, Jessica, is her live-in care partner.
In a conversation with Being Patient EIC Deborah Kan, Gutierrez-Parker shares her experience with the early signs of MCI, through her diagnosis, and the advocacy work that is now her passion.
Read or watch the conversation below.
Being Patient: LuPita, you were diagnosed in your early 60s. Tell us a little bit about when you first noted that something may be wrong.
LuPita Gutierrez-Parker: I noticed while I was working. I was a recruiter for the university, and I started to notice a year or two before the diagnosis. I was forgetting appointments with counselors, I was forgetting to look at my notes, and my appointments too. Also, it wasn’t as organized as they used to be.
I can recall a time where there was a lot of input I had to put into the computer. It was typical, and I had no problems before, and then all of a sudden, I can remember I had difficulty inputting the data into my laptop. That kind of upset me or alerted me to the issues, and I contacted my primary [care doctor].
Being Patient: This is something you have been doing for many years, right? I’m particularly fascinated with these very early signs. When you say you couldn’t really input the information into the computer, what exactly do you mean by that? What was that like?
Gutierrez-Parker: For me, it was difficult [because I] would look at the name on the cards to input the data, and it just would not connect my fingers, would not connect with my brain. Looking at the cards, the information on the cards to input that data— it just did not make sense. Then the times that I did, I was very slow at it, and also reviewing applications for the university and so forth. It was extremely becoming difficult for me, and I knew that something was wrong.
Being Patient: Did other people notice before you noticed? Or did you notice that something might be wrong during those episodes of not being able to input the information on the computer?
Gutierrez-Parker: I think some people noticed, but the administrators felt like I was just too slow in aiming to speed up the process. I think a lot of it, too, was my doing presentations to students, I would forget where I was in my presentation, and before, I could just rattle it off with no problem.
“I would forget where I was in my presentation,
when before I could just rattle it
off with no problem.”
I was finding difficulty in searching for the words and where it was at. I can remember a colleague of mine that also was a participant in my presentations as well through a different program that he operated and recruited for, and he would jump in and help me pick up where I was hesitant in answering, not because the information was just not there.
Being Patient: When you went to your GP, what was that like?
Gutierrez-Parker: She understood, she listened to what I had to say, and I explained to her the different problems I was having and why I was so concerned about it. Then when she realized that both my parents had Alzheimer’s dementia, she tested me and just gave me a basic test, which I did not do very well on. She realized then I probably should be seen by a neurologist. She did the referral to a neurologist, and it took me almost six to seven months to get in. Just to see him.
Being Patient: I’m curious about what type of tests she was giving you. What was the test that she gave you?
Gutierrez-Parker: It was just one of those basic ones where you draw the clock, and [she] actually asked different questions, that maybe it wasn’t an extended version, it was just a short version of this test. That’s what she thought, “I better refer you,” and she did, which I’m glad she did.
Being Patient: it. Then, you were still working, continuing with your job, and you got an appointment six or seven months down the line. What were you noting? How did you feel then?
Gutierrez-Parker: I felt overwhelmed, of course, but I kept it together pretty well. I worked for a full year before I had to resign and retire early. But at 61, you don’t think about those things. You just don’t. My plan was to work till I was 68 and then retire, but I think I was losing a lot of my train of thought.
I can remember I did let some of the administrators know after I did see a neurologist, but prior to that, I did have difficulty in presentations, and I ended up attributing it to “Oh, you know, brain lapse,” students would laugh, I’d make a joke of it. I would ask him, “Where did I leave off?” I said this is a test for them. So, I made it through. I was lucky, I think.
Being Patient: What was going on in your family at this time? Did anyone notice, or did you share with them that you’re having memory problems?
Gutierrez-Parker: No, not really. I didn’t want to alert my family or my daughters. I was kind of quiet about it. I wanted to wait until I actually received a diagnosis before I shared that information. When I finally did see a neurologist and went through that exam and tests, I finally had a diagnosis. I told my family, which is extremely difficult. I had to go to Seattle to tell my daughters of what was happening. I told them first, and I started telling my family, and I met with all of them. I think we had a family dinner, I can’t recall, and they were pretty quiet. I think they were shocked.
Being Patient: Did you ever talk about Alzheimer’s with your family in the context of your parents?
Gutierrez-Parker: Not really. We talked about our folks and how we took care of them and talked about stuff worries about him. We would laugh because my parents had a great sense of humor. We really didn’t talk about Alzheimer’s in general, in terms of it could happen within our family. It just happened.
Being Patient: You’re Mexican American. What was that like within the family being Latino in terms of discussing Alzheimer’s with not only your daughters but the family?
Gutierrez-Parker: It was difficult. Some of the reactions were, “Oh, don’t tell anyone.” I think they were worried about the stigma attached to it— of a person having Alzheimer’s. One brother made a joke, but he’s a joker, and he loves me, and they know that, and he wanted to support me.
“When I finally did see a neurologist
and went through that exam and tests,
I finally had a diagnosis. I told my family,
which is extremely difficult.”
He was like, “It’s okay. [LuPita], you were crazy before. You’ll be okay.” So, we laughed, you know, but they all are very supportive. We talk about it now. They’re comfortable with saying, “My sister has early onset Alzheimer’s,” and they’re not afraid to talk about it with whoever asked about me.
Being Patient: Why weren’t you afraid to talk about it? I know, in big Latino families, there’s more of a tendency to hide rather than come out and say it. You weren’t afraid. Why is that?
Gutierrez-Parker: Within any familia that’s Mexicano, we have a tendency of keeping that within the family, within the nucleus of the family. That’s not a bad thing. That’s a good thing, and I understand that. A lot of the time, I think we do that to protect each other.
“Within any familia that’s Mexicano,
we have a tendency of keeping that within
the family, within the nucleus of the family.”
I know for myself I’m an outgoing person, I’m not afraid to say what’s going on. Within my condition, I thought, if I have all these skills that I’ve used in the past, I need to use them now to get information out there— what little I know. Since then, I’ve been on the road to talking with people about Alzheimer’s and diagnosis and how to get treatment. Just any questions they have, I answer, and I think that’s for me, I enjoy doing that, like talking to people. I think also within my own community and communities of color. I want to get out there as often as I can because we’re not, we don’t like going to the doctors, and we’re very private people. It’s a lot of the stigma, and I’m trying to erase a lot of that if I can.
Being Patient: Well, it makes a lot of sense because you used to talk about college, right? We have a question coming in from someone in the audience who is wondering about when you went on long-term disability from your job. What was that like leaving your profession? Did you go on long-term disability?
Gutierrez-Parker: I did. It was difficult to leave my job, but I realized I wasn’t fair to my colleagues. I couldn’t do the work anymore, and I knew I had to retire. I didn’t tell the administration, I told the human resource people at my university, and they understood, and they knew. They asked me, “What would you like to do?” And I said, “I think I need to retire.” I know they were leaning that way, and I’d rather leave on my own rather than forcing them into having to make a decision, which I know would have been difficult for my department. When I finally told my administrators, my dean was very shocked, and my director as well. They were very supportive. They wanted me to stay, but in all reality, I just couldn’t do the job anymore.
I couldn’t remember things, and I was forgetful. I was not being the person I should be, the professional I should have been. That was different now, I was different. I’m glad that they understood and they worked with me. I did apply for disability through the Social Security Administration, and it took several months. Then, I was on long-term disability, but now I’m off it because I turned 68.
Being Patient: Before we talk about how you are today, I want to talk a little bit about the neurologist appointment. Were you given a full-scale cognitive assessment? What happened at the neurologist, and how did you receive that diagnosis?
Gutierrez-Parker: When I met with the neurologist, my doctor, he did a battery of tests and then also examined me physically. Of course, you do blood work and all that, the labs. Then, after all those tests, he had me go to the University of Washington Medical Center for a PET scan. We did do that, and although it wasn’t the right one that he wanted, it did indicate, apparently, that I did have MCI.
[I] started with MCI, and then later I progressed. I progressed rather quickly, I think, within the first year, and now I’m in the early stages, probably when I was 62 or 63.
Being Patient: From the time you noticed early signs, it’s been about six years. How are you doing today? Tell us a little bit about how you’re doing and whether or not you’re noticing any changes.
Gutierrez-Parker: I think I’m doing pretty good. My mom always used to say to us, “God only gives you what you can handle,” and I believe that. I also believe in the power of prayer, and a lot of people support that and pray for me. I really believe that I am doing very well.
“Yes, I have difficulties like people
in my condition, but I don’t let
that get me down.”
Yes, I have difficulties like people in my condition, but I don’t let that get me down. I do a lot. I knit, I do the work on my house. I cook, still, but of course, I forget sometimes what I’m doing, but my daughter, who lives with me, really supervises that a lot. She monitors quite a bit of that component of kitchen detail.
Being Patient: That is wonderful. I think it’s also the way of a lot of Latino families: you take care of your parents. Talk to us a little bit about that and your daughter Jessica and the decision to move in with you. How was that decision made as a family?
Gutierrez-Parker: After I told my daughters, it was within the first two weeks after my daughter decided, “I’m going to move home.” I didn’t really have a say in it. I told her that I didn’t want her to do that because it’s my job to stay as their mom, and I wanted to be in control and, continue my independence, and continue living on my own. With her, she explained to me how this was important for her to come home and help me in any way that she could. But mainly, it was not so much help, it was the fact that she wanted to spend time with me because no one knows how much time you really have. That’s why she gave up everything and came home. That’s her job, taking care of me and helping me do things, and we have a lot of fun, too.
Being Patient: Tell me a little bit about that dynamic change. We all kind of experience this as our parents age, but you’re a young parent. When my mom was diagnosed, she was in her early 80s. So, that transition from the daughter to parenting your parent was not an easy transition in our family. It seems like you and your daughter are very close, and like it was an easier transition for you. Tell me a little bit about that. How do you feel about that? Does she make a lot of the decisions for you now?
Gutierrez-Parker: The rule changes, like her driving she drives now, I don’t.
Being Patient: Was that hard for you? That’s a big sticking point for a lot of people making the decision to stop driving.
Gutierrez-Parker: I realized that I could cause an accident, and I didn’t want to hurt anyone on the road. Plus, I saw myself with a lot of anxiety when I’d be driving. I realized for myself it was time to stop and plus, and both my daughters felt maybe I should consider that. Then, finally, they were firm. They said you must stop driving, which was not a problem. So, now I’m chauffeured around, that’s nice.
“I allow that, my daughter to help me
when I know I need help, but I get
As a mother, I was always responsible, I was a single parent and always, you know, being the one in authority and in charge, so to speak. But shared responsibilities, now. I allow that, my daughter to help me when I know I need help, but I get stubborn sometimes. She still knows that I like to be independent, and she will be there if I need her. She knows when to step in. She does help me quite a bit because I don’t understand a lot of technical things anymore. Some of the information I receive mail and so forth, she handles my business for me because I just can’t even balance my checkbook anymore or my accounts. I let her handle all of that, but it was hard to accept in the beginning, but now I’m getting more comfortable with her helping me make decisions.
Being Patient: You were telling me earlier that you changed your living situation, right? You went from a condo into a house. Tell me a little bit about that and how that all happened?
Gutierrez-Parker: My daughters and my ex-husband, he’s a good friend of mine, they all met, and they decided as I was progressing, and also the stress I was receiving and going through at the condo, that we should all live together that way Kim, my friend, could help Jessica as I progressed later, and I know she’ll need more help later.
Being Patient: So, you sold your condo, and you moved into a house that your ex-husband also lives in.
Gutierrez-Parker: Right. I’m still working on my condo, trying to sell it, and he sold his, and I’m still trying to sell mine, but yeah, we live together. They’re in a big house. I live on the west side, he lives on the east side of the wing of the house. My daughter lives in the middle. So it works. People, a lot of people first react like, “Oh, you guys got back together?” No, we’re still divorced, and yes, we’re just good friends. I really appreciate him doing that because not many men would do that.
Being Patient: That’s actually a really beautiful thing. Also, just a testament about really how much he cares about you and your daughter.
Gutierrez-Parker: When I’m in a position, my late stages, I think Jessica is going to need more help. I know Lizette, my oldest, will come home and help, and I know Kim is going to need help with me. They’re all very supportive. My brothers and sisters, I know, will be supportive, and they’ll also help. I am thankful that this is happening that we are able to live together for me to help me, and I wish that the families could do that as well. I’m sure other families do.
Being Patient: Tell us LuPita, what do you want people to know about this disease and your diagnosis? What is the message that you’re trying to spread?
Gutierrez-Parker: Basically, I want to be able to give people information. I want families to know that, yes, your loved one has Alzheimer’s, and yes, they will progress later down the road, but for now, enjoy them while you have them with you. Live your life, let them live their life the way they want to, within reason of safety, and so forth. Get out there, spread the word, let people know this stigma needs to stop about people with Alzheimer’s, and that we’re still very capable, and we’re going to do whatever we need to do in order to get information out and continue to love that person. They’re still the same person; they’re just a little bit different, and that’s okay. They’ll tell you how they feel and what they want from you.
“They’re still the same person,
they’re just a little bit different,
and that’s okay.”
Being Patient: That’s a great message. It is exactly what exemplifies living with Alzheimer’s as opposed to dying of Alzheimer’s. Have you ever been in any trials? Latinos are disproportionately impacted by Alzheimer’s, and there’s this need for more participation in research, so I was just wondering if you ever thought of that before?
Gutierrez-Parker: I have been asked to participate in one, but I was not able to because one it was in another state. The other one over there was two and a half hours away, which, during the summertime, I could get to Seattle and participate in, but during the winter months, I couldn’t really because of the pass. It’s difficult to drive over the pass, and my daughter is not too experienced in driving in those conditions. So we just didn’t do it, but if there’s a possibility that I can become involved in a trial, I certainly will.
Katy Koop is a writer and theater artist based in Raleigh, NC.