This Neuroscience Nurse Got Early-Onset Alzheimer’s: Her Early Signs and Her Journey Since

By | April 25th, 2024

"I just thought I was getting dumber." Despite working as the program director at her local stroke center, it took neuroscience department nurse Doreen Monks more than a year to get an Alzheimer’s diagnosis. Learn more about her diagnosis and her path toward advocacy in her words.

When Doreen Monks first started showing symptoms of Alzheimer’s disease, she was working as a neuroscience nurse practitioner. While she was having problems managing paperwork and administrative tasks, it wasn’t until her medical director—a neurologist and friend—spoke to her that she realized something was wrong. 

“I got a diagnosis of some form of dementia, but they weren’t quite sure what,” Monks explained, “It took 13 months later to get the diagnosis of early-onset Alzheimer’s disease.”

As she shared in her previous live talk with us, Monks was diagnosed in 2016 at age 63, after which she became dedicated to sharing her story and working with organizations like Voices of Alzheimer’s, US Against Alzheimer’s, and the Alzheimer’s Association. Leveraging her background in neuroscience, specifically focusing on stroke care, management, prevention, and treatment, she now uses her voice to reduce stigma around Alzheimer’s and promote education about the disease. 

Monks joined Being Patient Live Talks again to discuss how she is using her medical background to educate others about Alzheimer’s disease.

Watch or read the full conversation below.

Being Patient: The last time we checked in with you was 2022. Tell us about what you’ve been up to over the last year.

Doreen Monks: I’m probably as busy now, or just about as busy as I was when I was working, and working probably as hard as I did then— just in a different venue. I’m doing well. I bob and weave and tuck and roll with any little glitches that come up, but you learn to compensate for those things because your purpose is beyond that. Your purpose is to live the life you choose in some respect. Obviously, you didn’t choose the diversion, but you can still choose to have a good life. That’s what I’ve done.

Q&A: A Retired Nurse on Living With Alzheimer’s

Being Patient: You’re not the first person who’s worked in neurology who has ended up with a dementia diagnosis. Tell me a little bit about your job and when the signs of Alzheimer’s first started to present.

Monks: I was a neurology nurse for a little over 40 years, and for probably about 35ish years of those, I was a neuro nurse practitioner. At the time when I was diagnosed, I was actually the program director for a stroke center here locally. I established the program. I sat in this tiny, teeny, weeny little awkward office for about eight minutes and wrote the program. 

It’s kind of like delivering a baby; I developed this little baby of mine, and it came to fruition. The focus of the center was to focus on hyperacute treatment of acute ischemic stroke or hypertension, or hemorrhagic stroke because we knew that the longer your brain was without oxygen, the more likely you were going to have damage. 

That was the focus. It encompassed, with it, a lot of education, not only to the community, obviously, but to the healthcare staff, physicians, and nurses as well. It was a multi-level approach to a particular problem. 

“At the time when I was diagnosed, I was actually
the program director for a stroke center here locally.”

Now, as to diagnosis, it was a Thursday in March of 2015, just shy of my 62nd birthday, which is in April, and I got a knock on my door from my medical director, who’s obviously a neurologist and my friend. She knocks on the door, she says, “We have to talk,” and she closes the door. She sits down, and I have many things rolling around in my head. She said, “I noticed some things that are happening with you that need to get looked at,” and I was like, “Okay.”

Being Patient: So, at that time, you had no idea.

Monks: I had no clue. Now, retrospectively, it was very clear. [In] the years when I was taking on more and more administrative work—and quite frankly, I hate paperwork— it became harder and harder and harder for me to do it. I kept thinking, “What is wrong with you? This is not rocket science.” I mean, I was just having a hard time grasping it. 

In fact, one year, with my evaluation, I got this glowing clinical review and got sort of blasted on my administrative role and didn’t get a raise that year because I wasn’t really working out.

Being Patient: We hear this over and over again from people who have been diagnosed, that having trouble with those administrative tasks is an early sign. The ability to focus and multitask, which people could do before symptoms appeared, becomes very difficult.

Monks: I think it’s because of the higher levels of functioning and executive functioning, and that’s where problem-solving then and higher level [multitasking]. I mean, nurses are inherently multitaskers in the clinical area, but even to this day I would have no qualms about my clinical skills, quite frankly. I may not be able to document as well as I used to, but I think it’s because the more complex the act, the harder it is to process, especially as the [tasks are] newer. 

Being Patient: You weren’t having trouble with clinical work, which one would think is a little more difficult than administrative work, with organization, forms, and things like that. Why do you think that is?

Monks: I think it’s because inherently, that’s what I was, and that’s what I did. I had been working clinically for 40 years. The longer you’ve done something, it becomes almost less challenging because it’s processed deep within you. So, it’s like recent memory versus distant memory. I think that’s the reason why I wasn’t having trouble with that. We chatted, my friend, quite a while after that. She said [that] first of all, I was doing some repeating stuff. 

We had a study coordinator who worked for me, and when you enroll a patient in a clinical trial, you get a little stipend. She came to me one day and she said, “Did you get the check from so and so?” I said, “No, not yet.” She came back to me the week after and she said, “Did you get the check?” I said, “No, that’s very odd. Once you check in on it and call them, let me know.” She came back that afternoon very sheepishly and said, “Well, not only did we get the check, but you deposited it.” 

Now, on my desk, there was one of those little folder holders. I had a folder for that study and I opened it up and there was the receipt. Now, it never dawned on me to even look at that folder when she asked me, I couldn’t connect A to B. I still, 10 years later, have that recollection of that. 

Being Patient: Did you think the problems with administrative work were just because you were getting older?

Monks: I just thought I was getting dumber. I thought suddenly [I’d] lost whatever intelligence I had, or [was] losing it and couldn’t figure it out, and it was my fault, not my brain’s fault. It wasn’t the world’s fault. I mean, I couldn’t figure out who it was that was responsible for this.

Being Patient: Tell us about your diagnosis journey. Was the process different because you worked in neurology?

Monks: When I talked to my friend I immediately became pragmatic. I said, “This is something I gotta fix because that’s what nurses do. We fix things.” That Thursday, I called my primary care physician, and I said, I have to see her. I saw her on Monday. I told her what was going on, and she said, “Well, I’m not a neuropsychologist..” She said, “This is what you’re going to do. We’re going to have an MRI to make sure there’s nothing structurally going on, and you’re going to go and see a neuropsychologist. 

“I just thought I was getting dumber. I just thought suddenly
[I’d] lost whatever intelligence I had, or [was] losing it and
couldn’t figure it out, and it was my fault, not my brain’s fault.”

Within two weeks I had an MRI. I had the first neuropsych testing then, and at that point I was still 61. I got a diagnosis of some form of dementia, but they weren’t quite sure what. It took 13 months later to get the diagnosis of early-onset Alzheimer’s disease.

Being Patient: You were sitting inside a neurology department, and it took 13 months to get a diagnosis. Why?

Monks: At that point, Alzheimer’s was purely a clinical diagnosis. The only way you could diagnose Alzheimer’s disease at that point was [via] autopsy. There was no test at that point. I finally got diagnosed because I had a different type of PET scan than they do now. It’s called the FDG scan, and it measures glucose activity in the brain. 

The only reason I could get that was because years ago I had a melanoma removed. The reason it got approved was because it was looking to make sure there was no metastasis. I had that PET scan done on April 28th of 2016 at that point. At this point, now, I [had] just turned 63. It was [then] when I had that scan done, the picture showed a pattern consistent with Alzheimer’s disease, and that’s how I got diagnosed.

Being Patient: How did you react to that information?

Monks: I had the PET scan at nine o’clock in the morning, and I drove from where I had to work, which was maybe 10 minutes. As I was pulling into the parking lot, I remember, of course, I was late because I had to park across the street. I got a text message from my neurologist who said to call me. So I called him, and he said to call right back, so I waited in my car. 

“At this point, now, I just turned 63. It was [then]
when I had that scan done, the picture showed a pattern
consistent with Alzheimer’s disease, and that’s how I got diagnosed.”

Being Patient: Did this doctor work at the same hospital as you?

Monks:  I worked with this particular person on a rather routine basis. I called him back, and he said, “Well, it’s Alzheimer’s, and I’ll see you on your next visit in two weeks,” or whatever it was, I can’t remember the exact time. That’s how I got diagnosed.

Being Patient: Of course, you have exceptional access. You’re working inside the department. Most people’s neurologists wouldn’t call them on the phone and say, “Hey, here’s what I saw.”

Monks: I texted my friend, the medical director, and I said, “Well, it appears to be Alzheimer’s.” She said, “I’ll meet you in your office and we’ll go over the scan together.” She sat with me, and we went over the PET scan so I could see what he was talking about, which was so much. I’m so grateful for her because at least I [could] concretely see where the damage was. 

Being Patient: Did you have family with Alzheimer’s disease? Was this on your mind?

Monks: I took care of my mother for about three or four years. She had vascular dementia and her sister had some form of dementia. I think [it was] Alzheimer’s, but nobody actually told me, but retrospectively I think that’s what it was. 

Being Patient: Did you have any risk factors or comorbidities like diabetes?

Monks: I was overweight and I had hypertension, which was well-controlled. I’ve had rheumatoid arthritis since I was 35, so there’s that whole inflammatory process going on. I am much healthier at 71 than I was at 62. 

Being Patient: How have you been doing these past two years? You’re very aware of the brain and symptoms and things like that.

Monks: I am aware of certain changes. They are probably more obvious to me than anybody else. I’ve been told I have, I’m quoting here, a superior cognitive score. My brain has, I guess, enough ultimate knowledge base in it that has sustained me over these years. 

“I tell everybody the blessing to someone with Alzheimer’s
or dementia is their iPhone, Google, and GPS.”

It’s hard to believe because I talk so much, but I do have some word-finding difficulty. I’m easily distracted. I get easily distracted and a little discombobulated about things. So, getting organized, I am a notetaker [so] if I lose my iPhone, I’m dead. I tell everybody the blessing to someone with Alzheimer’s or dementia is their iPhone, Google, and GPS so you’ll know where you’re going and what you’re supposed to know, and when you get there. 

Being Patient: We’re getting a question from our audience— unless a family member or fellow worker notices a big cognitive change, what are the chances dementia will be picked up on the traditional wellness exam? I think she’s referring to the MoCA test, which is like a very early cognitive assessment.

Monks: Hopefully, that’s done on the wellness exam, which is a little bit of a problem lately. It’s not done. We’re working very hard to make that mandatory for anybody over a certain age, and I guess they are trying to decide what that age should be. I personally think it should be anybody 40 and older. I’m sure that’s not going to be the age that they choose. Yes, it could be, but if that’s not, you have to become that person’s strongest advocate and demand further investigation. 

If you had chest pain, you would expect that the physician would do a certain EKG. They’re not going to let it go; they’re going to do further testing. If there was a possibility of cancer, the same thing; they would do further investigation to rule in or rule out anything. So, you must mandate further investigation. 

The problem is that most primary care physicians are not equipped to do an extensive preliminary diagnosis, but at least they need to pick it up and start the workup. The goal would be to get to a cognitive neurologist, but you need to get that first part of the workup done. 

Instances of dementia or dementia like behavior can come from reversible problems. Doing routine blood work, doing an MRI to rule out anything structurally there, and then getting that person to the neurologist [are all good practices]. But the key, of course, is for them to own it, for them to say it’s worrying, it’s bothering you, it will bother me. 

My primary care physician absolutely thought there was nothing wrong, but she didn’t stop there. She owned up to the fact that she wasn’t prepared to make any further diagnostic studies. The key is to absolutely demand further investigation.

Being Patient: Absolutely. I love how you can give us expert advice as well because you were the nurse working in neurology and then you have that personal experience as well.

Monks: There’s a bill [Alzheimer’s organizations are working on] going to Congress, hopefully, that is actually going to provide for free online education for primary care physicians, so they will be better equipped to do that initial evaluation, because the wait time now for cognitive neurologists is up to three years.

“My primary care physician absolutely thought there
was nothing wrong, but she didn’t stop there. She owned
up to the fact that she wasn’t prepared to make any further
diagnostic studies. The key is to absolutely
demand further investigation.”

Being Patient: The other thing that upsets me is that the gold standard of care is to have a baseline assessment so that you have something to compare it to. Very, very few doctors out there will take the time to give a healthy person a baseline assessment.

Monks: It takes maybe three minutes. The problem is when you present with symptoms, that disease has been developing for 20, maybe 30 years. I’m being hopeful, not sure if this [has] ever happened— but if you start doing baseline testing at 50, let’s say, the minute you pick up a glitch, you drop a point or two on this on their testing, whatever score you use, that’s where you start the evaluation. Because we are now in the golden era of treatment, but for a very select group of people. That’s why an early intervention, certainly early diagnosis is imperative. 

Being Patient: When you said it only takes three minutes, what type of test are you talking about?

Monks: I’m talking about a mini mental status exam, where you name the president, you spell words backward, you do math, and your serial sevens in your head. Those tests take a few minutes. 

Being Patient: Are those accurate baselines?

Monks: They are to some. They certainly are a starting point. Are they diagnostic of anything? No, but they measure. These tests are standardized against a certain standard. A functional [person] should test a certain level, say 30 points, and when you drop to 28, now, that’s concerning. 

Again, they’re not diagnostic but that’s like to say, every year, you get your blood count done. Every year your hemoglobin is somewhere between 12 and 14. One day, you get your blood drawn, and it’s 10. Nobody, no physician is gonna let that go. They’ll at least repeat it. If it’s still low, they’ll do further testing to see if there is something causing that and/or do you have anemia. They wouldn’t let it go, even though it’s kind of a mild change. 

That’s what we’re looking for. What mini-testing does, whichever one you use— it opens the door to investigation. It doesn’t get you there to the diagnosis, it’s just the starting point. 

I think, again, if we do it on a yearly basis, like checking your blood pressure, and, you know, doing the EKG, we will know, the minute you drop, “Oh, maybe want to look a little bit into that.” It doesn’t mean we’re gonna start doing amyloid PET scans, but it might mean doing further tests, maybe sending you just for neuro-psych testing, to see if it is something. 

“What mini-testing does, whichever one you use —
it opens the door to investigation. It doesn’t
get you there to the diagnosis, it’s just the starting point.”

It is not the be-all and end-all of things, but it at least gets the door open to investigation. We’re gonna have a blood test, but it’s readily available. You’ll do if there’s concern. 

Being Patient: You seem like you are still living a very vibrant life and it doesn’t appear that Alzheimer’s has slowed you down or stopped you in your tracks. You’re still very knowledgeable.

Monks: I am, I guess, a persistent person. I work my way around everything. I don’t do things the same way but I still get them done. For instance, I’m gonna say cooking because I love to cook. There were things off my head; I cooked them for years. I can’t do that anymore, necessarily. I’ve had to take the time to work through the steps so that I can go ahead and do it. 

Being Patient: Meaning before you did not have to recall the steps, but now you have to follow a recipe?

Monks: I wouldn’t have to, but this is also my mother. We were very poor growing up and we ate a lot of chopped meat. My mother used to make this thing called chop meat stew. It’s kind of one of those comfort things. It literally is like boiling chopped meat, throwing potatoes, and some canned tomatoes in it. But, I had to write that out, so I could trigger the memory again.

I make my grandmother’s potato salad. It was handed to me by her. I can’t quite get the flavor anymore. I have to make somebody else taste it, because whatever it was in my brain, I can’t remember that taste. 

Being Patient: What does it mean today to you to live with Alzheimer’s disease?

Monks: I take it as a challenge, along with all the other things I have to deal with. I have multiple comorbidities, unfortunately— they’re all being managed. I tell everybody I will have to give in at some point, but I will never give up. It’s something that I bring along with me. 

“I’m left-handed, I have hazel eyes, and I have Alzheimer’s disease.”

I’m a little shorter than I’d like to be, a little wider than I like to be, I’m left-handed, I have hazel eyes, and I have Alzheimer’s disease. That’s how I chose to bring it. I don’t live with Alzheimer’s, it lives with me. It’s just a part of my life, but it’s not who I am, and that’s how I look at it.

Being Patient: Are you on any new therapies?

Monks: No, not yet. There’s some glitches because of rheumatoid arthritis. I’m on meds that will preclude you from taking them.  I’m going some other way until we do some testing and stuff. I don’t know that I’ll ever be able to. It’s okay. I still take my Aricept every day.

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

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4 thoughts on “This Neuroscience Nurse Got Early-Onset Alzheimer’s: Her Early Signs and Her Journey Since

  1. Miss Doreen Monks is a gem! I loved her canid explaining of the matter. She is strong & honest in her life. She was very descriptive of her experience with this horrible disease and how she is handled it. I thank her for sharing about something that we don’t know enough about. I will keep her in my prayers and root for her success in all she endeavors to do.

    1. Thank you for your kind words about Doreen Monks. It’s inspiring to hear how her strength and honesty have resonated with you. In case you missed it, here is a link to her Live Talk where she talks about her experience with diagnosis and her path to advocacy: https://www.youtube.com/watch?v=Vw6ALmBafTA .

  2. This is an excellent presentation and has helped me personally. Doreen is a champion with a wonderfully optimistic spirit and having a long slow progression of early onset Alzheimer’s. I am a retired psychologist who assessed many people for dementia while working so knew the signs. My symptoms started early (mid-late 40’s) so I had neuropsychological testing done over many years although they were always stable until about 5 years ago when I began working with a neurologist at Northwestern Medicine. PET scan, spinal tap and blood work resulted in a diagnosis of Alzheimer’s at age 79. I, too, am doing well with slow progression but struggling to find a support group and others to talk with about changes. I plan to meet with someone from our ADRC next week to see about establishing a support group and am very excited about that and becoming an advocate. Doreen inspires me. Thank you so much for this presentation!

    1. Hi Kaye – thank you for being here – YOU inspire us! Keep tuning in for our Live Talks, and we’re wishing you all the best in your future advocacy work.

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