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Alzheimer’s Podcast – Episode 2, Transcript

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[00:00:00] Paul Hornback: I think the very first initial symptom was my inability to remember people’s names.

[00:00:07] Micaela Arneson: The path toward an Alzheimer’s diagnosis usually starts when someone experiences symptoms that trouble them.

[00:00:12] Paul Hornback: That was pretty easy to live with. But I think the real kicker was when I started having trouble doing math. And that was what my job was basically.

[00:00:23] Micaela Arneson: Depending on the person, diagnosis can take a little while.

[00:00:27] Paul Hornback: I finally acquiesced and talked to my neurologist and I opened up to him about all the symptoms that I was having.

[00:00:36] Micaela Arneson: Alzheimer’s doesn’t present the same way in everyone and the symptoms can sometimes mimic other diseases.

[00:00:42] Paul Hornback: And it took about a year for him to finally get a diagnosis. He did a lot of other testing to rule out things.

[00:00:50] Micaela Arneson: Since the first case of Alzheimer’s was recorded in the early 1900’s, diagnostic tools have come a long way, and there are some exciting developments on the horizon. In this episode, we’ll talk all about it and we’ll hear from people living with Alzheimer’s and their loved ones on how they manage the emotional impact of diagnosis.

This is the Alzheimer’s disease podcast. I’m your host Micaela Arneson. The Alzheimer’s disease podcast was created for educational purposes only. It’s not a substitute for formal medical advice, diagnosis, or treatment. So if you have questions about a medical condition, talk to your qualified healthcare provider.

Our story begins in 1901.

[00:01:31] Dr. Jason Karlawish: The first case in the literature that is now called the first case of Alzheimer’s was an individual in her fifties, Auguste Deter, was a good German housewife.

[00:01:40] Micaela Arneson: Auguste lived in Frankfurt, Germany with her husband, Carl, until she became convinced he was having an affair. Then she started forgetting things and having trouble sleeping, speaking, and writing.

[00:01:53] Dr. Jason Karlawish: And so her husband brought her into the asylum and the rest is history in the early 1900’s.

[00:01:56] Micaela Arneson: August met Dr. Alois Alzheimer, who was fascinated by her condition. And he diagnosed her with presenile dementia before her death in 1906. And then he looked at her autopsy results and discovered protein formations in her brain that he had never seen before, amyloid plaques and tau tangles, which we discussed in the last episode. This made her case unique, so it was given a new name: Alzheimer’s disease. And for virtually the rest of the 20th century…

[00:02:24] Dr. Jason Karlawish: A diagnosis of Alzheimer’s was rather ghoulish. You had to die to find out definitively whether in fact what caused you to have dementia was caused by Alzheimer’s. Meaning, the only way someone could see was if they did a brain autopsy.

[00:02:36] Micaela Arneson: This is Dr. Jason Karlawish, by the way, a physician, writer and professor at the University of Pennsylvania.

[00:02:42] Dr. Jason Karlawish: And then all of a sudden everything began to change. And that occurred around the turn of this century when scientists developed ways to visualize the pathologies, not in a dead person, but in a living person. And the earliest, the first of those technologies, was using what’s called a PET scan, which is a method to detect tracers in the brain.

[00:03:03] Micaela Arneson: A tracer is a chemical that allows doctors to see problems in your body on an imaging test.

[00:03:08] Dr. Jason Karlawish: And the first PET scan technology was detected amyloid. Since then, we’ve developed tracers that can detect tau as well.

[00:03:16] Micaela Arneson: Retired neurologist Dr. Daniel Gibbs did both a tau and amyloid PET scan as part of a study of people at risk of Alzheimer’s disease.

[00:03:28] Dr. Dan Gibbs: At the end of that time, we gathered together in this conference room with all the people in the research group, I think there were 20 or 30 people in the room, and the first thing that Gill asked me was, so what would you say if these scans were normal? And I would say at this point I’ve got enough cognitive issues that there must be something else going wrong and I would have to start looking for something else. So then he put the PET scans up on the computer and projected on the screen…

[00:03:54] Micaela Arneson: And sure enough, the scans showed the buildup of amyloid and tau protein, characteristic of Alzheimer’s disease.

[00:04:01] Dr. Dan Gibbs: There clearly was evidence of Alzheimer’s disease, even though I didn’t have a diagnosis of Alzheimer’s dementia. So that was really interesting and really took a lot of the frightening part of it away from me because it gave me a target to work on. How can I slow the progression of this disease?

[00:04:17] Micaela Arneson: These imaging tests are a huge leap forward from the autopsies of the 1900’s. And as Dr. Jason Karlawish explains our diagnostic tools are only getting more sophisticated.

[00:04:28] Dr. Jason Karlawish: It’s not just PET scans either. You can measure these amyloid and tau and spinal fluid. And the most exciting recent developments are the ability to measure those biomarkers in blood, a simple tube of blood can detect them. And so what once upon a time was a diagnosis that was only probable until you died, we can begin to measure that a brain is at risk of developing dementia, and that’s the biomarker revolution that’s transforming the way we think about this disease.

[00:04:55] Micaela Arneson: But we’re jumping ahead a little. These imaging and blood tests are typically not the first step in a diagnosis of Alzheimer’s disease.

[00:05:02] Dr. Jason Karlawish: Even before any kind of tests, it’s talking. History, history, history. I can’t emphasize enough the importance of just sitting down and asking the most essential question that begins all clinical encounters, which is what’s the problem, how can I help you?

[00:05:14] Micaela Arneson: And it’s crucial that family and other loved ones go with the person to share what they’ve observed.

[00:05:20] Anthony Copeland Parker: My name is Anthony Copeland Parker. My loved one, partner of 23 years, was diagnosed with early onset Alzheimer’s at the age of 53, 8 years ago. I started noticing her asking me questions that we had already reviewed previously as to where we would be going or what we would be doing. Back then, it was custom for you to reconcile your checking account. And she was having difficulties doing that. And then the other thing was she was starting to have problems at her job. I suggested that we go see a neurologist.

[00:06:00] Micaela Arneson: A neurologist may then recommend cognitive tests.

[00:06:03] Dr. Jason Karlawish: They’re a useful way to help get a sense of how impaired someone’s cognition is and what the specific kinds of impairments they have are.

[00:06:11] Anthony Copeland Parker: They did extensive testing. Most of it was verbal back and forth between him and her. And then there was some written portions that were done in terms of, make a face of a clock, can you draw a cow? Things like that.

[00:06:27] Micaela Arneson: There are several different cognitive tests.

[00:06:29] Dr. Jason Karlawish: The empress of all those measures is the mini mental state exam, which was developed in the 1970s, which has a score range from zero to 30.

[00:06:37] Micaela Arneson: The mini mental state exam, or MMSE, is a combination of different tests.

[00:06:42] Dr. Jason Karlawish: A bit of memory, a bit of orientation, a bit of spatial function, a bit of executive function. And you just take the performance on each of those little bits added up and you get the score.

[00:06:52] Micaela Arneson: And there’s the Montreal Cognitive Assessment, or MoCA, which also uses a score range of zero to 30.

[00:06:59] Dr. Jason Karlawish: The St. Louis Mental Status Exam, otherwise known rather cheekily as the SLUMS, is another example of that. There’s nothing mystical about these tests. They’re generally administered in a fairly efficient way. They take no more perhaps than 10 to 15 minutes, depending on the test. And they give a number, and we like our numbers. And those numbers create some degree of a coherent language across practitioners and whatnot.

[00:07:22] Micaela Arneson: All these steps, or some combination of them, history, cognitive tests, imaging, and spinal or blood tests, go into making a diagnosis of Alzheimer’s disease.

[00:07:33] Anthony Copeland Parker: They handed us a 20 some page report. We went in and he reviewed it in detailed with all the different tests that they did and the outcomes. It was early onset Alzheimer’s that she had.

[00:07:48] Micaela Arneson: Although early diagnosis and a better understanding of Alzheimer’s means that people can live better for longer, it’s still a progressive disease and there’s no cure. So receiving a diagnosis can feel like a gut punch for people and their loved ones.

[00:08:03] Paul Hornback: I was by myself and he gave me the diagnosis and I was stunned, but we talked about what path lie ahead of me. And then I held it together until I got back in the car. And when I got into the car, I just sat in a parking lot and probably cried for about 15 minutes.

[00:08:19] Micaela Arneson: Paul Hornback lives in Kentucky, and he was an engineer before he was diagnosed with early onset Alzheimer’s about 10 years ago, at age 55.

[00:08:28] Paul Hornback: It was a devastating blow because Sarah and I had all kinds of plans that we thought we would do when we retired. And I was planning to work till about 62. And so was she, so it was tough. But I’ll let Sarah go ahead and speak as well.

[00:08:43] Sarah Hornback: I was devastated. I couldn’t believe it. I didn’t wanna believe it. Paul is such a good man, a righteous man. And it was like out of the blue. How could this happen? I felt totally out of control. And my pity party lasted like a year. I cried, teared up at least, almost every day for a year. It was unfair. And I just could not fathom that we were gonna go through this.

[00:09:10] Micaela Arneson: Everyone has their own coping mechanisms, but Anthony found that learning as much as he could about the disease gave him some clarity and a sense of control over what was coming next.

[00:09:20] Anthony Copeland Parker: I got into problem solving mode. Okay, so what do we need to do? What are the recommendations? I did a lot of research on the subject of what’s good, you know, they always say that what’s good for the heart is also good for the brain. Trying to find new ways and new techniques to be a better caregiver for her.

[00:09:39] Micaela Arneson: It also helps to build a tribe of people who can step in and help with logistical and emotional challenges, like friends, family, social, and support groups.

[00:09:48] Sarah Hornback: We started a memory cafe, which is not exactly a support group, but a place where those with dementia and their caregivers can just come and be in a safe, social environment. And we learned so much from that. And we became, in our local community, the go-to people because we were open about it.

[00:10:10] Micaela Arneson: Paul, Sarah, Anthony, and Dr. Gibbs all said that being open about the diagnosis has helped them process it and reduce stigma by broadening other people’s understanding about what Alzheimer’s is.

[00:10:21] Paul Hornback: I haven’t been afraid to share my story, but I think every person is different. And I think the first thing you have to do is you really have to wrap your mind around the disease that you have, and then you have to make a decision as to how you’re gonna proceed.

[00:10:38] Micaela Arneson: Paul and Sarah have found that focusing on the things they enjoy also helps them live with the disease.

[00:10:43] Paul Hornback: I think that’s important because you need to fill the void with things that you can still do to compensate for the things that you can no longer do. And I’ve been really good at that. I find lots of things still that I can do on the farm that keep me busy. And I don’t just sit around and mope about things.

[00:11:02] Micaela Arneson: So we’ve covered the diagnosis of Alzheimer’s disease. But before we wrap up, we need to talk about one other diagnosis and how it relates to Alzheimer’s. Mild Cognitive Impairment or MCI. Here’s Dr. Karlawish again.

[00:11:15] Dr. Jason Karlawish: Long story short is Mild Cognitive Impairment describes a syndrome, mainly cognitive problems that are causing inefficiencies, mild though they may be.

[00:11:24] Micaela Arneson: Like dementia, MCI isn’t a disease. It describes symptoms like forgetting dates or losing your train of thought. Symptoms that your friends and family might notice, but aren’t interfering that much with your day to day life. MCI is caused by disease and it’s a relatively new discovery.

[00:11:41] Dr. Jason Karlawish: Once upon a time, but not that long ago, in order for a physician clinician to diagnose someone with Alzheimer’s disease, the clinician first had to decide that the patient had dementia.

[00:11:53] Micaela Arneson: In other words, the only people being diagnosed with Alzheimer’s were those that had much more severe cognitive symptoms.

[00:12:00] Dr. Jason Karlawish: You could almost reduce the world of Alzheimer’s at that time to a bumper sticker slogan: no dementia, no Alzheimer’s. As researchers began to study who does and doesn’t have Alzheimer’s, and follow them over time, what they began to find is people who had cognitive impairment, but it was only mild, meaning they were just inefficient in their daily activities, they weren’t disabled.

[00:12:21] Micaela Arneson: They fell somewhere between people who were absolutely fine, no cognitive issues, and people who had dementia. But there was no term to describe them, to describe people like Dr. Gibbs.

[00:12:32] Dr. Dan Gibbs: I was having a little trouble with remembering names of colleagues, but again, I wasn’t prepared to say that was abnormal. In 2010, I switched from a large group practice to an even larger practice. And I really couldn’t find my way around this huge hospital without the residents, but I was still working.

[00:12:51] Micaela Arneson: In any case, he was a little concerned. So he asked a neurologist friend to do some cognitive testing.

[00:12:57] Dr. Dan Gibbs: I did really well on that test. I scored in the 95th percentile on all the domains of memory and cognition, save one. And that was verbal memory. And I was in the 50th percentile there, which was still normal. But the difference between that and the ability to do these other cognitive tests suggested that there was something amiss in the part of my brain that’s involved in verbal memory, although everything was still normal.

[00:13:22] Micaela Arneson: He did more tests and eventually the results came back, Mild Cognitive Impairment. Sometime later after his symptoms progressed and he did the tau and amyloid PET scans, Dr. Gibbs was officially diagnosed with Alzheimer’s disease. What research has found is that it’s common for people who have MCI, caused by a particular disease, to develop more severe cognitive issues, possibly progressing to dementia.

[00:13:47] Dr. Jason Karlawish: Individuals who had this sort of liminal state of mild impairment and cognition, but yet not dementia, were more likely over time to develop dementia caused by whatever disease is causing the MCI. The most common of those diseases would be Alzheimer’s disease. So Mild Cognitive Impairment together with biomarkers really have revolutionized the way we think about the disease. Namely, you don’t have to have dementia to be diagnosed with Alzheimer’s. You just have to have Mild Cognitive Impairment and biomarkers, or someday you don’t even have to have Mild Cognitive Impairment, but just the biomarkers of the disease.

[00:14:20] Micaela Arneson: If you’d like to learn more about early diagnosis and what to expect at a doctor’s visit, head to our website at healthunmuted.com for links to the Mayo Clinic and National Institute on Aging, among other resources. We’ll also link to support groups like the Family Caregiver Alliance, which can help people and their loved ones cope with the shock of diagnosis. Since the first case of Alzheimer’s disease, we’ve learned a lot about how it affects the brain and a person’s ability to function, but there’s still so much we don’t know.

[00:14:50] Dr. Jason Karlawish: A sort of emerging way to think about the disease, which I think is less well understood is the patient perspective of how it’s affecting their mind. That is to say their ability to perceive the world.

[00:14:59] Micaela Arneson: So that’s what we’ll talk about in the next episode.

[00:15:02] Paul Hornback: I call them my foggy days. Everything is slowed down. It’s like your brain is not fully engaged.

[00:15:09] Dr. Jennifer Bute: I would hear people say, what’s the point of visiting? Feelings remain when everything else has gone.

[00:15:16] Micaela Arneson: This is the Alzheimer’s disease podcast. This show is part of the Health Unmuted audio library by Mission Based Media. To listen and learn more, visit healthunmuted.com and follow our show on your favorite podcast player.

The Alzheimer’s disease podcast is written, hosted and produced by me, Micaela Arneson. Sound design is by Ivan Juric. Our executive producer is Dan Kendall and Chris Hemmings is our associate editor. Many thanks to Dr. Daniel Gibbs, Anthony Copeland Parker, and Paul and Sarah Hornback for sharing their personal experiences. And to Dr. Gibbs and Dr. Jason Karlawish for sharing their medical expertise.

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