Alzheimer's PET scan

For Years They Lived With Alzheimer’s. Then New Information Came to Light

By | October 18th, 2024

These two women were each diagnosed with Alzheimer’s disease in their early 60s. But recently, each learned they don't have the key biomarker of Alzheimer's disease in their brains — meaning they’ve been misdiagnosed for years. Here's how this news has affected them — and what advice they have others.

This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.

What would you do if, after years of living with Alzheimer’s disease, you found out you were misdiagnosed?

Retired neuroscience nurse practitioner Doreen Monks and retired academia recruiter LuPita Gutierrez-Parker are both living that reality, as they each found out, through brain scans, that they do not have amyloid plaque in their brains despite living with cognitive impairment — and a doctor’s diagnosis of Alzheimer’s disease — for years. 

Gutierrez-Parker was diagnosed with mild cognitive impairment at age 61 and with early-onset Alzheimer’s a year later. Since, she has been an advocate for Alzheimer’s education and outreach to diverse communities. Monks was diagnosed with early-onset Alzheimer’s in 2016 at age 63. She too became dedicated to sharing her story and working with organizations like Voices of Alzheimer’s, US Against Alzheimer’s, and the Alzheimer’s Association. 

But with amyloid PET scans now covered by Medicare, more people may find out that they may not have Alzheimer’s disease but another type of dementia or cognitive disorder entirely. To shed light on this unique situation and on Alzheimer’s diagnosis itself, Monks and Gutierrez Parker joined Being Patient founder Deborah Kan in a panel on misdiagnosis. Read highlights from the conversation or watch the full video below to learn their insights on navigating Alzheimer’s misdiagnosis.

Being Patient: How did you find out you were amyloid-negative?

LuPita Gutierrez-Parker: I finally had a PET scan in May of this year. In June, I received the results from my second neurologist and he indicated that I did not have amyloid plaque in my brain. I was shocked but not surprised. I do have dementia. So, is it good news? Is it bad news? It’s about the same. 

I pushed for [a PET scan]. I advocated for myself, and I wanted to know what type of Alzheimer’s I had, and if so, did I have amyloid plaque, and if so, how much? I wanted to find out specifically what I qualify for a new study or to get into a new drug that’s on the market, like Leqembi or one of those others that I might qualify for.

Doreen Monks: I wanted to enroll in a clinical trial. There was another drug kind of behind donanemab. I wanted to enter the trial, so I did all the preliminary stuff. “Oh, you’re going to be a great candidate.” Well, [my] MRIs [were] fine, consistent with the other MRIs. 

Then, I got the PET scan as part of the inclusion criteria for the study, and I got my study partner. I got called to the center, and the medical director— she was the one who met with us, and she asked me to explain how [I got diagnosed].  She said, “Well, your PET scan was normal.”

Being Patient: How did you react to learning that you don’t have Alzheimer’s disease? What does this mean for you now?

Monks: I was very angry. I lost a lot in nine years. I lost my job. I lost my money. I lost 70 percent of my income when I stopped working. I lost my home. I couldn’t afford where I lived anymore. I had to rehome my dog because nine or 10 years ago, it was like you got nine years to live. 

I expected not to make my 70th birthday, and I planned my life accordingly. I spent 11 months in assisted living until I realized there was just no way I could stay here. I’m now living in a modified-income apartment because that’s as much as I can afford. 

It took me a little while to get over that. I felt used, but I didn’t [get what] the problem was. If I [had] known then, so much could have been different. Maybe it wouldn’t. Maybe I’d still be in my own home. I’d still have my dog, and I could actually buy something instead of having to plan for six months. 

Then I thought, well, who are you supposed to be angry at? I mean, angry at the science and what it’s not, was that anybody’s fault? Was it my fault? It wasn’t the doctor’s fault. I mean, it’s over. You’re not getting that back. You’re not getting money, and we know where that’s going. I thought, “Well, now you know, and what’s next?”

“Then I thought, well, who are you supposed to be angry at?
I mean, angry at the science and what it’s not, was
that anybody’s fault? Was it my fault?
It wasn’t the doctor’s fault.”

Gutierrez-Parker: Same. I was really [upset] when I found out. I was diagnosed in the beginning with MCI, then a year or two later, it was into early onset Alzheimer’s. I went for years with this belief that I had early-stage Alzheimer’s, and I changed my whole life.

I’m currently living in a situation where it’s great. I like it, but the point is it uprooted people’s lives and mine. I had to quit my job, just like Doreen, and that made me angry because I really enjoyed my work. The thing is, was there somebody to blame? That’s hard to say. 

I want to say, “Ooh, if I could prove it,” but if you don’t, you can’t. I got a second PET scan and [found] out in June I don’t have Alzheimer’s. I don’t have amyloid, but he goes, “The thing is, you do have dementia, and most likely vascular dementia.” I said, “Well, do I have vascular dementia, or do I have Lewy body— what is it?” Well, we’re not sure until next year when we do more testing. It’s like, now I have to [start over].

Being Patient: How did your doctor explain it to you? Did you get a new diagnosis?

Gutierrez-Parker: They’re going to be looking at different testing, like computerized tests that they have and so forth, which I took last year in order to compare to next year. It’s frustrating. I understand what he’s talking about, doing comparisons of where I was before to where I’m at now. At the same time, are we going to pursue something else? I need to know. What is it that I do have?

“Are we going to pursue something else?
I need to know. What is it that I do have?”

Monks: Part of that clinical trial was the blood test that’s about to be approved. What that blood test does is it measures the levels of amyloid and tau protein. My tau protein was elevated in that blood test, not the amyloid. Then I went for a spinal tap, and [it] showed that I have elevated tau levels. Now, what I need is a tau PET scan, which you cannot get. 

The only way I can get it is through a clinical trial. [It’s] about an hour and 15 minutes away from me in Toms River. There’s a clinical trial site that is testing for tau. In November, I’m going down. I had to be off Aricept for three months. 

I’m now going down there to hopefully get screened for the trial. If I get into the trial and into the second phase of the screening, they do another amyloid PET, but they also do a tau PET. I either have mild cognitive impairment due to tau apathy [or something else]. Now, the disease that we know about that is elevated tau is frontotemporal dementia. It’s either FTD or Lewy bodies. This is the working [theory].

Being Patient: Has finding out that you do not have Alzheimer’s changed how you’re approaching your future?

Gutierrez-Parker: I have a history of Alzheimer’s in my family and dementia. Both parents had dementia. I know eventually that’s going to happen. I’ve prepared everything. The only thing I haven’t done to be ready for the time I do depart is set up my funeral, but I’m in the process of doing that now. 

My legal papers, my meeting with my lawyer, I’ve done all that. Right in the beginning, it was, “Go and get your affairs in order.” [I thought] I didn’t have much time. I have a referral to another neurologist at the UW Brain Center in Seattle, and I’m waiting to see if I can get in to see a doctor there. Again, I’m on a three to five-month wait. In the meantime, I’ll continue the two different types of medication I’m on for my brain, and I’ll keep doing what I have been doing. 

Monks: It changes the trajectory of your life. Like LuPita said, we’re told we have a very finite amount of time. You had this little window that you were going to try to enjoy. I went to an elder lawyer and everything, the same thing. The only thing I haven’t done is a funeral. You think, “Okay, I’m going to live an X amount of years, and then I’ll fall off the cliff, and the disease will take over.” Now, am I just going to plod along with this? I don’t know what to do with my life now. I’m still figuring out what I am supposed to do now. 

I’m still volunteering and doing all that stuff. The story changed again. When you get diagnosed with Alzheimer’s, your life stops, and you have to recreate your life, and you do that. Then, 10 years go by, and now, whammo, your life stops again. Now, you have to recreate this new life based on the fact that nobody knows yet. We’re both back to the point of finally getting diagnosed again. We’re on round two of diagnosis.

“When you get diagnosed with Alzheimer’s, your life stops,
and you have to recreate your life, and you do that.
Then, 10 years go by, and now, whammo,
your life stops again. Now, you have to recreate
this new life based on the fact that nobody knows yet.”

Being Patient: Is seeking a new diagnosis changing how you approach advocacy work ten years later?

Gutierrez-Parker: You’re going to continue to live your life, right?  You can continue to advocate for yourself and for others. In my activism and my advocacy, I belong to various groups, and the reason I do that is because we have to help other people who have dementia and Alzheimer’s. They don’t have that advocacy. They don’t have that person to go out with them and advocate for them. 

Monks: You’re right about that. That part of life hasn’t changed. The passion behind the advocacy work, and I can speak for LuPita, is still as strong as ever. We belong to multiple organizations because each organization looks at this problem in a different way, and it also exposes us to more people. That’s really a task at hand. We talk to everybody we can and then some.

Being Patient: How are your symptoms of dementia progressing? How is your memory right now, after living with an Alzheimer’s diagnosis for years?

Gutierrez-Parker: For me, I know [there are] things I used to be able to do I can’t do anymore. I used to be really active. I’m not as active as I used to be. I don’t go out as much anymore because [of] all the noise and the commotion. It really bothers me. I don’t feel comfortable. 

My forgetfulness is getting worse. My daughter is my care partner. She helps me do so much more than before. I don’t cook as much anymore because I forget to put in the spices and so forth, which I used to enjoy. Have things changed? Yes. I’m quieter. I’m not as social as I used to be. I know I feel different. I am different.

“Have things changed? Yes. I’m quieter. I’m not as
social as I used to be. I know I feel different. I am different.”

Monks: For the most part, everything’s been fairly consistent. I did better once I stopped working. I’m a single person. I have all my bills on autopay. I live in a 600-square-foot apartment, so there’s not an overbearing amount of stress in my life. I think that has helped me stay the way [I am]. 

My memory is a little different, [maybe] impacted more because I’m 71 than having the disease. For the most part, things are pretty consistent. I probably have more physical issues. I have a lot more physical actually, a lot more physical issues now that are impacting me more than my brain.

Being Patient: What is your advice for people concerned about misdiagnosis or getting a correct Alzheimer’s diagnosis—knowing what you know now?

Monks: From a diagnostics [standpoint], it’s almost hard to say. I think now that PET scans are the gold standard, you have to have a PET scan. It has to be a part of the diagnosis workup, no doubt. It would be like, “We think you have coronary artery disease, but we’re not going to do a catheterization.” This is the catheterization. That’s the hallmark of this disease: elevated amyloid plaque. 

10 years ago, I don’t know what I [would have] done. I was sitting in my car, and my neurologist called me and said, “Well, it’s Alzheimer’s. I’ll see you next week.” I took that as good faith. My neurologist, medical director, and I— we went and looked at the PET scan, and there was this pattern that said that was indicative of Alzheimer’s disease.

At that point, nine years ago, when we were both at the beginning of our journey, the only way to diagnose Alzheimer’s was by autopsy. I don’t know what I would have done differently except to say that, were I going through this process now, I would demand that I have an amyloid PET scan.

“When we were both at the beginning of our journey,
the only way to diagnose Alzheimer’s was by autopsy…
Were I going through this process now, I would
demand that I have an amyloid PET scan.”

[PET scans] should be the absolute. It is the gold standard right now. Now, once the blood test comes out, because it’s got an over a 90 percent accuracy rate, then just do the blood test because it’s a lot easier and cheaper. Now, some people have access to the blood test. If you have access to the blood test, you get the blood test. If you don’t have access to the blood test, get the amyloid PET. That’s nonnegotiable.

Being Patient: In hindsight, is there anything you would have done differently when you were originally seeking a diagnosis?

Gutierrez-Parker: When I was first diagnosed, I had a PET scan, but they did the wrong PET scan. [It was] a different test. What he was looking for, I’m not sure. I can’t remember, but he received the results, and he indicated to me in the meeting that it was the wrong test. 

I asked him, “Okay, so are we going to have another test? Am I going to go back and get another one?” He said, “No,” and I said, “Well, why not? I want to know.” He said, “No, it’s too expensive.” I said, “Well, I have good insurance.” It didn’t matter. He said no.

Had I known what I know now, back then, I would have fought for the right to have another PET scan, even if I had to pay for it myself. I have Medicare. I have private insurance. I would suggest that people continue to pursue a correct diagnosis. My area has very limited health care here only because of [limited] doctors. We have a shortage of doctors in our county. 

We also have only one hospital in this area. If we want additional testing, we’re going to have to go out to Seattle, which I have done, and I’m going to continue to do that because I want to know exactly what [it is] and if it’s treatable. I want to be able to get into a new clinical trial, if possible, or start on a medication that will help slow the progression.

I have dementia, but what type is it? It is frustrating, but at the same time, I’m not going to stop living my life. I’m living, I’m doing what I want to do, and I’m enjoying what I do in my life now, but would things change? I’m sure things aren’t going to change later, but it is what it is.

Being Patient: How would you improve the diagnosis process overall? What could doctors be doing better?

Gutierrez-Parker: You shouldn’t have to fight to get an accurate diagnosis or even force doctors to give you the test you need. That should be a given. Anybody that presents cognitive impairment. They should be given a battery of tests. 

Yes, they’re expensive, but there’s the new blood test that Doreen was talking about. That is fairly new, and that’s on the market now in some areas; whether it’s here in my area, I don’t know yet. I would think doctors who get that in their area should call their patients in and have them tested. Why are we waiting for everything? It’s frustrating.

Monks: You should have the same intensive workup as if you were going in with cancer or if you’re going with heart disease. Your brain is the most important organ in your body. Stop screwing around with it. I think it’s imperative that, yes, like LuPita, you have to be your own advocate. You [have to] be cranky about it sometimes, and you have to find the right doctor.

“Your brain is the most important organ in
your body. Stop screwing around with it.”

“A neurologist is a neurologist is a neurologist”— it’s not the case. You have to work hard to try to find someone who is a cognitive neurologist. I’m a neuro nurse, so my heart belongs to neurologists, but they’re not all equally trained as somebody who specializes in it. It took me four neurologists to get the right one, and I’m a neuro nurse. I worked for some of these people. 

[Finding] that right person, like LuPita said, it’s months. You’re waiting months. This is the problem. There’s not a lot of them out there. People wait six, seven, eight months, or a year or two. But, if you find the right person, then the other stuff falls into place. If you can’t find the right person, then you need to do that. You need to do your due diligence, get on the computer, get the work up, and say, “This is what I want.”

If they won’t do it, find another one. Like LuPita said, she’s willing to drive to Seattle. I know it’s not around the corner, but you [have] a nice brain, you want to keep it, and sometimes you [have] get out there and push. You just [have to] keep pushing.

Katy Koop is a writer and theater artist in Raleigh, NC.

If you find our articles and interviews helpful, please consider becoming a supporting member of our community. Frustrated by the lack of an editorially independent source of information on brain health and Alzheimer’s disease, we decided to create Being Patient. We are a team of dedicated journalists covering the latest research on Alzheimer’s, bringing you access to the experts and elevating the patient perspective on what it’s like to live with dementia.

Please help support our mission.

One thought on “For Years They Lived With Alzheimer’s. Then New Information Came to Light

  1. Whether it’s Alzheimer’s or dementia, what difference does it make in how you live your life? There’s no cure, yet. One day at a time.

Leave a Reply

We are glad you have chosen to leave a comment. Please keep in mind that comments are moderated according to our comment policy.