Ep 83: Doreen Monks – The Emotional Journey of Alzheimer’s and Dementia (part 2)

In this episode of BrainStorm, host Meryl Comer continues explore the challenges of false Alzheimer's diagnosis in her interview with Doreen Monks, a former neuroscience nurse practitioner. Upon re-examination, Monks' diagnosis was revised eight years later as mixed dementia, but the stigma of Alzheimer's has already taken its toll.

Part 2 highlights issues in the dementia diagnosis process, the gap between scientific advances and clinical practice, and the emotional toll of misdiagnosis. Doreen Monks' personal journey offers both practical advice and emotional support for others facing similar challenges, emphasizing hope, proactive health management, and the need for scientific advances reaching clinical practice more efficiently. Take a listen!

BrainStorm by UsAgainstAlzheimer's is sponsored by Genentech (gene.com)

Produced by Susan Quirk and Amber Roniger

Transcript

Doreen Monks (00:00):

I mean, when I was in my fifties, somebody said, you can, you're going to go for this test and we're going to do a PET scan on you. We're looking for amyloid plaque. There's part of me said, well they wouldn't have found it 'cause I didn't have it. But had I had the diagnosis, I don't know there's a part of me that's would've said, I would've been very proactive and maybe made changes, smaller changes in my life then. So I wouldn't have had to make the major changes later. But I don't know.

Introduction (01:30):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer is a co-founder, 24-year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, Slow Dancing With a Stranger.

Meryl Comer (01:46):

This is BrainStorm and I’m Meryl Comer. The Alzheimer's community is in a silent crisis. 50% of people believe to have dementia go undiagnosed and a shortage of trained neurologists, key people and families waiting up to a year or more to be seen by a specialist. Our guest today is Doreen Monks, a former neuroscience nurse practitioner, diagnosed with early onset Alzheimer's at age 63. Was told eight years later that her updated diagnosis was mixed dementia. I asked her advice on how to prepare in advance of seeing a specialist because you're losing precious time while waiting.

Doreen Monks (02:29):

I think if there's somebody with you, you know, like my husband is the person who's having difficulty, absolutely you must go with them and write down everything. Carry your notes. So literally with a piece of paper saying these are the things that I have been noticing my husband doing over the last two months, three months, four months, whatever. And I need them to be evaluated 'cause that's really important. The other thing is, you know, we're ensuing and trying to get more primary care physicians educated to identify the dementia and to start the diagnostic process earlier. Because you're right, there's not a lot of neurologists and there's even less dementia related physicians. You know, cognitive neurologists.

Meryl Comer (03:10):

How often do you see your physician to check on where you are?

Doreen Monks (03:15):

Every six months? Should be four neurologists to get the right one. And you know, I'm an old neural nurse and I kept thinking I should know more than they do 'cause I'm not an egoistical person. So I'm thinking this is a problem. But I found that she's wonderful. We correspond if there's an issue. I am now trying to get into a different trial because my amyloid levels were normal, but my T levels were elevated, which is another abnormal protein or abnormal growth of protein that needs to get evaluated. So we're sort of working together to get this done so I can get another diagnosis, hopefully the right one this time

Meryl Comer (03:50):

During. Help us understand where you are right now and how long it took you to get there.

Doreen Monks (03:56):

Right now I'm not angry anymore. I am still a little sad because my life is very different. I went from owning my home to living in a modified income apartment. I can't afford to have a dog. And I'm a dog-aholic person. Like you know, I'm very dog centric. I will say hello to a dog way before I'll say hello to a human, which is terrible. But I do literally to not be able to afford a dog and money's very tight. I can't, you know, and that, that bothers me. I knew what had happened. I was eight years, but they happened for a, what I thought was a real reason that I had Alzheimer's disease. They happened not because of that, but because there was no reason for them to happen. Because looking back, had I known then what I know now, I could have perhaps downsized my position.

Doreen Monks (04:49):

I was still clinically very sound just administratively I was having difficulty. If you ask me where home is, it's my home in Bloomfield. It's not the other three places I've lived since then. So I miss that more now because there was no reason for it to happen than when it originally happened. I will get over that too. 'cause again, I'm just not a morning person. It's just frustrating. It's just frustrating. I keep thinking, I worked as a nurse for like 40 years. I have a master's degree and theoretically I have high enough IQ and yet this is where I am. And sometimes that that does bother me.

Meryl Comer (05:26):

I did a little research in one of the earliest studies looking into mixed dementias. Came at the NIH in 2016. Now that's the year you were diagnosed originally with Alzheimer's. So isn't it an issue of the science catching up?

Doreen Monks (05:43):

I think so, and I think, oh, I mean I think personally the science is well ahead of the clinical arena. That's just my personal opinion and I think we need to do a better job of that. And I think getting the primary care physicians help to those who want to, to help speed up the diagnosis, et cetera, to catch up science, you know, the science is snowballing. It's unbelievable Now for the primary care physician, they can't be the experts in everything. You know, they're dealing with a whole lot of stuff, you know, and a lot of diagnoses and a lot of different conditions. The science in those areas are increasing as well. So it's not like cancer stalled and you know, heart disease stalled. No, there's really way farther advanced than the Alzheimer's. We just need to get things moving a little quicker and we're doing such a, a disservice to people, I think.

Doreen Monks (06:30):

And really it's not a kind thing to do, you know, to know stuff or things that would help someone and just not be able to utilize them. We need to get the clinical arena to catch up with the science. First of all, I think the next step should be you stop the symptoms in their place. Wherever you are, you stop. So the disease does not progress. And then if we can actually cause a decrease in the clinical presentation of what the person is going through, that would be the next step. But I think in like 20 years from now, we're going to look back and go, what the heck were we thinking? You know? And there's going to be a foray of treatments, you know, much like diabetes, you know, sometimes one drug worse, sometimes another drug, sometimes two drugs worse, sometimes three drugs worse. And I think we're going to get to that point. But again, it's going to be hard if the science is so far ahead of the clinical arena

Meryl Comer (07:18):

On that point with all the technologies in the early diagnostic space, they now say they can predict 10 years before you'll get the disease. Knowing what you know, would you have been prepared to know 10 years before your diagnosis, your original diagnosis?

Doreen Monks (07:38):

You know, I don't, I don't know. I mean when I was in my fifties, if somebody said, you can, you're going to go for this test and we're going to do a PET scan on you we're looking for amyloid plaque. There's part of me said, well they wouldn't have found it 'cause I didn't have it. But had I had the diagnosis, I don't know. There's a part of me that would've said I would've been very proactive and maybe made changes, smaller changes in my life then. So I wouldn't have had to make the major changes later. But I don't know, if they told me 10 years before my diagnosis, nobody knew anything about Alzheimer's disease, I think it would be horrible. All you knew about Alzheimer's disease is that you lose your all cognitive ability and you end up being bedridden and you don't know anybody and you can't talk and you can't eat. It would've been very difficult to deal with if I really had the disease and they told me I actually had it. Now I think we're in a different ball game. If you can identify an elevation and plaque in the person's brain prior to presentation of the symptoms and we have a treatment, what's to say? You don't start the treatment sooner and eat up the plaque before it becomes a problem.

Meryl Comer (08:45):

When you go earlier and earlier, it interfaces with the whole notion of prevention. Where is your head on the issue of prevention?

Doreen Monks (08:56):

I believe my whole heart and soul that this is a disease that you can absolutely make a difference in. I got to 69 and I decided I probably should lose some weight. So I lost 72 pounds. I was healthier at my 70th birthday. Now I'm 71 now than my 70th birthday party than I was at my 60th birthday party. I work out four days a week now. I mean, I eat better than I ever had. And there's clear science that if you start early, I mean I shouldn't say that. Whenever you start, it will be better than not starting at all. Keeping your mind active, being social, going out. One of the terrible things that happens to somebody in the early stages I think is they hide. You know, they, they're embarrassed, they're ashamed. They don't know what's going on and they hide. They don't go to the church group anymore. They don't play bingo. They make excuses not to go to their family gatherings or they go, then they hide in the corner. 'cause they're afraid, oh my god, I may say something stupid and somebody's going to think, oh, everybody's going to know. That's, to me is just heartbreaking. Well, it's high time that society adapts to the person with dementia. You're talking about 7 million people in this country, 7 million people. And God only knows if that's accurate or not 'cause of the misdiagnosis, et cetera.

Meryl Comer (10:09):

During more and more people are going to end up in a similar situation where they've been diagnosed one way and later told that it's actually a mixed dementia. How should the doctors deliver the message to the patient? You've been there, what would you advise?

Doreen Monks (10:26):

I met what the head of the research program with my study partner. And you know, in retrospect, I was angry, mad at her too. She actually started off the conversation with, tell me how you were diagnosed. So I went through the whole story and she said, well your amyloid PET scan was normal. And that's where she stopped. Right then she didn't say, and you don't have Alzheimer's disease. She kind of let that sink in first and then we realized that obviously that meant I didn't have Alzheimer's disease. That was the issue with that. You know, I think if you have to be honest, you have to bring some hope with that information. This is the diagnosis you don't have, but these are the things we're looking at. And really try to make it as supportive as you can and not just ending it there. Giving them more support further, go further in their diagnostic process

Meryl Comer (11:18):

During the reality may be that more people don't have Alzheimer's disease and end up with mixed dementia.

Doreen Monks (11:26):

There'll be more people with mixed dementias, but maybe there's a lot more people with Lewy bodies dementia than we thought. And many more people with frontotemporal dementia and all the other like part the, the dementia that goes along with Parkinson's disease. You break open the wall, you don't know what's going to be behind it. We're going to go through a little chaos because there's so much of variation coming out. We're just not ready to deal with all the little nuances of the disease. So it's a good time and it's a difficult time.

Meryl Comer (11:52):

I don't mean to get too personal, but how far forward do you look in your life?

Doreen Monks (11:57):

I have several comorbidities I think might kill me before the dementia does. You know what, I don't look real, real far ahead because the end will be when the end is. I have nothing to do with that. My feeling is I'm going to push you back as far as I can. I get up every morning and I say, if today's as good as yesterday, I have it made.

Meryl Comer (12:16):

Doreen, thank you for your advocacy, your candor, your experience. It's so important to so many people. And thank you for taking your time because time is so priceless for all of us. Thank you for sharing it with us.

Doreen Monks (12:30):

Oh, it was my pleasure. And thanks for asking me. You know, we've done some work together and it's organizations and people like you who give me the drive to, to go further

Meryl Comer (12:40):

And back to you. Thank you. Our guest today is Doreen Monks, a former neuroscience nurse practitioner who was diagnosed with early onset Alzheimer's in 2016, at age 63. Eight years later, she was told her diagnosis was wrong. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Speaker 2 (13:05):

Support for BrainStorm by UsAgainstAlzheimer's comes from Genentech. Genentech is prepared to ask tough questions to help tackle the root causes of systemic inequities in healthcare. Subscribe to BrainStorm through your favorite podcast platform and join us for new episodes on the first and third Tuesday of every month.