Episode Transcript
[00:00:02] Speaker A: Each individual's illness narrative that's stripped of the horror stories, that's infused with hope, that is talked about publicly, will add up such that culture will change.
That will be what will start to happen here. So in the end, what starts out as technology, diagnostics and therapeutics is having a cultural transformation.
[00:00:34] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain, produced by the Penn Memory center and the Michael Nadoff Communications Hub. I'm Jake Johnson, and today we're diving into a revolution in dementia care, a revolution that's changing not just medicine, but culture.
This conversation is inspired by Dr. Jason Karlewich's three essays that inaugurate his stat column, neurotransmissions, and an additional essay he co authored with Dr. Josh Grill for the Philadelphia Inquirer.
These pieces explore breakthroughs in diagnostics and treatments, the ethical challenges they raise, and what it means to live well with a mind altered by disease.
Dr. Karlowish is an Alzheimer's specialist as well as the executive producer of this podcast.
Today, my co host, Terence Casey. We'll talk to Dr. Karlewish about why he wrote these essays, what they reveal about the future of dementia care, and why he believes we're entering an era of, quote, democratizing dementia.
But first, a word from our sponsor.
[00:01:42] Speaker C: Understanding longevity can better prepare individuals to make thoughtful decisions, not only about their finances, but about their health and lifestyle, too.
Matching lifespan with healthspan and pairing both with financial readiness has become a defining challenge. The TIAA Institute wants to help build longevity literacy to better support outcomes for all.
[00:02:08] Speaker A: Hey, Terry.
[00:02:08] Speaker C: Hey, Jason. Thanks for joining me today.
[00:02:11] Speaker A: My pleasure. I trust you voted.
[00:02:14] Speaker C: I did. And I've been working the polls, and it's a beautiful day, which is very promising for getting the voters out, usually.
[00:02:21] Speaker A: Yeah. It's a good feeling when you vote.
[00:02:23] Speaker C: Yeah.
[00:02:23] Speaker A: Like you're part of something bigger. You're part of the democracy, which maybe it's appropriate that on election Day, we're talking about democratizing dementia.
[00:02:31] Speaker C: Yes, indeed. I'd like to start maybe with your stat essays that you've been writing, Neurotransmissions.
Why the title Neurotransmissions?
[00:02:41] Speaker A: Well, when a neuron transmits, it takes molecules and turns them into information that goes to another neuron which does the same, which ultimately produces mind. So it seemed kind of clever. Like, you know, coming out of my head, I'm producing some ideas which I turn into words, namely sentences. And believe me, what we think and what we write are not the same thing. And there are My ideas and, you know, and it is about the brain, particularly about the aging brain, particularly about the aging brain beset by diseases that cause dementia. And, and so, you know, Tory Bosch, my editor at stat, and I just got into a conversation, she said, you know, how about doing a column on dementia? And rather than calling it like dementia, we said, let's call it neurotransmissions to kind of capture that sort of theme that I just explicated. It also, I think, gives me some freedom. You know, it's not just about dementia. I think some of the later columns are going to be working on are going to look more broadly at the aging brain, you know, from birth unto the end. But yeah, so we. It's these three essays sort of inaugurated the column. I'm working on a new piece right now and keen to talk about these first three.
[00:03:46] Speaker C: And one of the recurring themes that you brought up when you hired me and I bring up when I bring on new members of the communication staff is we don't tell horror stories. But when you start in your first essay, you're very clear dementia is a big problem both in the United States and beyond. But you're quick to pivot away and say that this is about to change.
What's driving that change?
[00:04:09] Speaker A: Yeah, I mean, what's driving that change is technology first and foremost. I mean, the ability now in a living human to say, this is the disease that is causing your illness, is transforming the illness experience, which I then argue and will, I think, flesh this out, is changing the disease the way we think about the disease as a culture.
And there's a second technological innovation that's at work, which is treatment, the ability to intervene in the course of disease with drugs. So together, diagnostic biomarkers and disease modifying drugs are changing not just the way doctors think and talk about the diseases, but the illness experience. And the central argument that I'm making is if you add up those individual illness experiences, meaning each individual story, what you're going to start to do is change culture about how we think about this vast problem called dementia. And it is a vast problem. And, you know, short of a cure, it will be a vast problem. It will be a vast problem. But it's, I think what's happening is a change in how we think about what it is like to live with these diseases that cause dementia.
[00:05:18] Speaker C: Now, when we talk about talking about disease, I think there's really two directions there. There's actually saying it out loud, the words that we choose to use and the words that we choose not to use both of those, really frame the conversation about the conversation. And one of the ways that we've, we've heard people talk about dementia is as an attack, especially in the field of politics on election day, where we're still seeing this, but in previous years we saw it a lot more. Why is that so harmful?
[00:05:52] Speaker A: Well, let's walk back a bit from that question. It is, I don't care what one's politics are with respect to the current system, the two parties that we have, you know, who you're for, who you're against. It is the case that in the last several years an aging, particularly at the federal level, government has prompted a lot of rhetoric that has employed dementia as a political weapon.
And to me, actually, one of the things that inspired this essay was during the last general election I received in the mail a flyer that had sort of a creepy photo of the then President Biden and some criticisms of things he said or did or whatever and then said dishonest or demented.
Now, you know, I don't care what one thought of President Biden, his policies.
I thought that was absolutely inappropriate, you know, and, but what it was an example of was how dementia is used as a lurid metaphor for things that have absolutely nothing to do with dementia per se, that is to say, the syndrome caused by a disease in the brain.
And that got me thinking, you know, why is that and how I think events that are occurring, as I've said, with diagnostics and therapeutics are actually going to start to change that and in time make it unacceptable to talk about dementia that way. And, and as that happens, there will be this cultural transformation.
[00:07:14] Speaker C: And you talked about some of the advancements. I think that teases why we're pulling away from sort of the old maxim that, that sometimes doctors wouldn't talk about the word dementia because they knew that that meant you were on a road with a dead end.
[00:07:30] Speaker A: Yeah, yeah, no, and another example, I was on a tour a couple months ago in United Kingdom and you know, many of the people on the tour were older and, you know, older than me or whatever. And you know, people were asking me, what do you do? And I remember one of these gentlemen said to me when he found out what I did, you know, and I was talking about my work, he said, oh, I'd take a test for Alzheimer's as long as it came with a gun license, you know, hahaha. But I think he also captured in a lurid metaphor, you know, the horror that surrounds the word dementia.
And you know, I'M not trying to turn dementia into unicorns and rainbows and ice cream and happiness. You know, all disease is miserable in its own way, or at least bad or pick your words. But I want to, I think that the emotional inflections that are surround this are going to change. So you know the, the flyer about Biden, this gentleman's quip over dinner, you know, in, in, in, in Oxford, are selected examples of, you know, what actually occurred, used to occur with cancer. You know, once upon a time, cancer was a lurid metaphor that had nothing to do with cancer. So for example, I remember when I was growing up, John Dean, you know, White House counsel, testifies the United States Senate and talks about a cancer on the White House now, you know, things were pretty bad in the White House during Watergate. But again, the use of cancer as this metaphor for political corruption was an example of how in that time cancer was like. Dementia is now the source of lurid metaphors. And indeed, in those times, eminent physicians would say, you shouldn't tell people they have cancer. John Menninger, who was a prominent American psychiatrist, advised a physician to think very carefully and not by default even tell people if they have cancer. So that was the world we lived in then. And boy, has that world changed. And that world changed because culture changed. Why did culture change? Because we began to make innovations in the way we diagnosed and treated cancer. And now cancer is talked about as just for what it is, which is cancer. And you know, I've actually people who've read the essays have remarked, God, is it really the case that we used to use cancer with all these lurid metaphors? I'm like, yeah. And they're like, how weird. And you know, if you notice that we don't talk about cancer outside of cancer now the way we used to. And I think we may get there with dementia. By the way, all, everything I've said about cancer is totally cribbed from Susan Sontag's Illness as a Metaphor, which is a brilliant short essay on just this topic and very much was one of the inspirations for these essays.
[00:09:59] Speaker C: Oh, that's great. We'll share a link to that in our show notes as well here.
So we talked about telling no horror stories and stories of dementia. It sounds like we should add on to that.
We also don't tell fairy tales. And what we need are the real world experiences here across the full spectrum of the disease and the disease course. And you, you talk about that in your essays when you get into some of the advancements in biomarkers And I'd like to get into one of those stories, but could you just give us the 30,000 foot view? Where are we with biomarkers in Alzheimer's disease?
[00:10:35] Speaker A: Yeah, where we are with biomarkers in Alzheimer's disease, we have these measures of the pathophysiology of Alzheimer's, and we're developing measures of the path physiology of some of the other diseases, like Lewy body disease. And by pathophysiology, it's a multisyllabic word that simply says the ability to measure in a living human the pathology at work.
Now, once upon a time, but not too long ago, that was essentially impossible. The best I could do was get images of the pathology. So a good example of images would be an MRI of the brain that shows a pattern of shrinkage in various regions of the brain. We call it atrophy. That looks a lot like Alzheimer's. And we'd say, gee, this really looks a lot like Alzheimer's. It was metaphoric in that sense.
The confirmation would require Eddie Lee, the neuropathologist that we work with at the memory center, to literally take out the brain, fix it, freeze it, whatever he does, slice it up and say, look at that. I see amyloid plaques and tau tangles. And there it is, there's the disease. But of course, the person was dead. And that was the normative model up until terribly recently, which was all diseases were suspended around uncertainty, namely probable Alzheimer's based on everything we knew, until finally we get an autopsy. Biomarkers, measures of the pathology in a living human have transformed that. I can now tell a living human who has cognitive impairment if Alzheimer's is one of the causes. And also I'm beginning to get technologies now that are identifying other diseases that can cause dementia. And so that's completely upended the illness narrative for people because the uncertainty now is not completely cast out, but is beginning to be cast away. And that is creating a diagnostic certainty that we used to not have until you that, like I say, dreadfully died.
[00:12:23] Speaker C: And to what? What benefit is there to both the patient and the caregiver will say, or the family, the extended family? What. What difference does it make if these are more multiple diseases that ultimately will cause dementia?
[00:12:36] Speaker A: Yeah, that is the bottom line question. So what? What is it you're going to do if you know it? And I think humans don't like uncertainty, just like markets don't like uncertainty. So, meaning by markets, like, why does the stock market go into a bull market? Because there's uncertainty about where Interest rates are going, what's up with unemployment and is Chairman Powell going to keep his job?
And the markets crash and humans don't like that either.
Uncertainty begets anxiety. Anxiety begets all the things that we don't like about anxiety.
And I think one of the things that diagnostic biomarkers do is they palliate uncertainty.
Again, they don't make it a fairy tale. And I like that, you know, no fairy tales, but they make it a story that you now understand.
And I think once people understand why, they can begin to make, come to terms with it and make sense of it.
And I think that's what is happening and that's what I'm seeing in my patients treatment, of course, and we'll talk more about that I think helps. But for starters, just being able to explain to someone this is what is causing the mysterious mental phenomena that you're experiencing changes it from being mysterious to understandable and completely changes the illness experience.
[00:13:50] Speaker C: And I think we really saw that with the case of Barbara in your one essay.
[00:13:54] Speaker A: Yeah.
[00:13:55] Speaker C: Where you undiagnosed Alzheimer's disease. I had never heard of someone being undiagnosed with Alzheimer's except postmortem before. And she, she was diagnosed with late, which I'm sure listeners of our show are familiar with by now, but maybe not the general public. Could you just recap that story briefly?
[00:14:12] Speaker A: Yeah, I mean she was classic Alzheimer's, you know, amnestic, so executive dysfunction, elderly, you know, I mean it was a stereotype, textbook, classic case. And then her MRI showed classic bilateral temporal atrophy. You know, that image of what it, what it looks like and Alzheimer's probable. Well, you know, along come diagnostic biomarkers and I order both an amyloid and tau PET scans on her and they're totally negative. She has no amyloid, no beta amyloid and no tau.
Now those are the two pathologic hallmarks that Eddie Lee looks for when he does a pathology at Penn.
So she doesn't have Alzheimer's, she has le, which is limbic predominant age related TDP encephalopathy, which show notes will give people more links to, but is probably one of the most common causes of dementia in the 75 plus year old population.
And you know, it was really stunning to basically call up her daughter and say your mother doesn't have Alzheimer's. And I remember the daughter says to me, that's good news. Right. And I remember my response was sort of my earliest diagnostic biomarker cases.
My response was, you know, but your mother still has dementia. How could this be good news?
And she then educated me that you've changed the illness experience because up until now, a. I didn't quite know what she had. It was always uncertain. But to the extent that it was Alzheimer's, I had this narrative of Alzheimer's, which was one of, you know, forgetting who I am, et cetera. But the narrative of late, especially late, absent Alzheimer's, if there's no mixed pathology, is a much different clinical course.
So, you know, her mother still is impaired, she's still disabled, but it's a different reason and a different prognosis. And for the daughter, that was, believe it or not, good news. And that was one of the stories from my clinical practice that got me writing these essays.
[00:16:02] Speaker C: You bring in the phrase dementia deconstructed. It's one of a couple of different phrases.
[00:16:08] Speaker A: Carlos, the literary critic. Come.
[00:16:11] Speaker C: Doctor, for those who haven't yet read the essay, could you break down or deconstruct what is dementia deconstructed?
[00:16:20] Speaker A: Yeah, well, I'll give Jonathan Schott, professor of Neurology, University College London, credit. So I can't take credit. All I can do is say crypt from his notes, but, you know, leave it to a Yank to steal from a. From a Brit. But anyway, yeah, Jonathan Schott and I were talking and I interviewed him in the piece, and what he talked about was dementias being deconstructed. And what he's getting at is this concept developed in literary theory, which is getting behind the meaning of something that you're talking about.
In other words, what's the scaffolding that's holding up the construct? And when you get behind it, when you get to the scaffolding, sometimes the construct then falls away. And I think dementia, I agree with Jonathan, is being deconstructed. It doesn't mean that we won't use the word anymore, but it means that the word has behind it deeper meanings that we ought to talk about instead. And in this case, the deeper meanings are, well, what's the disease that's causing it? And so in my own practice, I find this. I don't find myself stopping with dementia. In other words, if you. If I think there's dementia, I want to then say, well, what's behind it? What's the diseases that's causing it? So too, mild cognitive impairment, and in particular, mild cognitive impairment, because I think that term itself is so liminal. Like, it's. It's just. It's mild cognitive. You've just basically said back to the person what they've told you, you know, it's like I have cognitive impairment and it's kind of mild.
And the point is that these words will fade from their imminence and instead be replaced by the diseases that are causing them. And so in that sense, I think dementia is being deconstructed. And I think in some sense we'll begin to just sort of fade into the background. It's still the problem we worry about, but the more we diagnose people early and can prevent dementia, the more I think the focus is going to be on the diseases that cause it. Albeit we don't want to lose sight of the fact that the problem is dementia. That's why we care about Alzheimer's and Lewy body disease and late in vascular disease, because they cause disabling cognitive impairments or in a word, dementia.
[00:18:19] Speaker C: So so far we've gotten to the point of a patient coming in for an inaugural visit. They've met with you, they've told their story, you've heard their story, kind of reconstructed it. Now we're adding in biomarkers, we can give a definitive diagnosis. The next step is discussions about therapy. And we, we talk about how treatment is exciting. And we're gonna talk about that in a second, But I just wanna take a quick break for a word from our new sponsor.
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[00:19:24] Speaker C: Welcome back.
In your third essay, you say treatment is exciting, and that is not a phrase that we have used in the previous 10 years of U.S. working together all that often.
What's changed in recent years?
[00:19:38] Speaker A: Yeah, you know, I think the opening line was, you know, diagnosis is interesting, but treatment is exciting and, you know, namely, and I'm, you know, I, I trained originally as an internist and I have very fond memories of, you know, treating patients. And it was very satisfying to have someone come in and smothering heart failure and within 13, you know, minutes, palliate that with medications, diuretics, nitrates, et cetera, and you could just sort of run the list of that. You know, people in septic shock, you know, being restored back almost from the brink of death, you know, et cetera. The guy my first case of Parkinson's I diagnosed started him on. On Levodopa therapy. And, you know, he and his wife said I was a miracle worker because he went from being essentially unable to walk to being able to walk, and we could just go on, you know, in the dementia space. Up until recently, the treatments we had were largely palliative treatments, mildly effective around the cognitive symptoms, and then the treatments for some of the mood disorders, particularly anxiety and depression. And there was no question some of those treatments really made a difference for people. But overall, I could finish a clinic at the memory center and never have written a single prescription. Not that that was my goal, but it was not a very exciting field. Apropos the thrills that my colleagues in cardiology, oncology, and other spaces were having with making a difference in the course of their patient's disease.
And it's probably one of the reasons why our field was kind of not very popular. Like, you know, our fellowship program would have, like, one applicant a year at the memory center.
And that has all changed. You know, last year we had nine applicants, and this year we have many. And, you know, my only problem is we don't have the money to pay for them. But that's a different conversation for another podcast. But it's because things have gotten exciting, namely, the ability both to diagnose but also to treat. Namely, we can make a difference in the disease now, at least the difference in the disease called Alzheimer's.
[00:21:28] Speaker C: For the longest time, the argument for patients coming into the clinic was to find support and confirmation in these very concrete, heavy clinical terms.
Now we're using words like hope and, you know, therapies and things. And so there's a sense of optimism both in the clinic and in your essays here.
[00:21:50] Speaker A: Yeah, I mean, hope has always lingered around in the field. And, you know, I. I privilege. Hope is something that patients and caregivers have to curate. I try to give them things that allow them to do that, but it's. It's. I think it's presumptuous of me to tell someone they, quote, should have hope.
That's a bit of a moral command. Having said that, it was difficult to give people a host of things that could. They could have hope in. I think we do a pretty good job at the memory center with the services, supports, diagnostic interventions we give them. I do. But, you know, patients would come back with hope. In things like a plant based diet or various name branded California physicians. I won't get names here who sell you a expensive set of cumbersome interventions, et cetera. What's my point? You know, people were looking for places to ground their hope in and I do think that the available treatments have given them something reasonably solid into which they can sink hope, Namely the anti amyloid treatments that are now available. There's two of them now that are approved by the Food and Drug Administration and that we are prescribing at the memory center. Lecanemab and Pantonamab.
[00:22:57] Speaker C: Now, under the promise of no fairy tales, these drugs come with, you know, uncertainty, some risk of side effects, very high costs, some other issues.
What are sort of the ethical dilemmas that have, have that come with these, these, these therapies?
[00:23:13] Speaker A: Yeah, there are two, I kind of grade them as grade one, grade two, Grade one I don't think is terribly novel and doesn't surprise me and I deep, but I deeply respect it. Namely, you know, like many treatments, as you pointed out, you know, these are intravenous treatments, although now leukemia is available in a subcutaneous injection, so they're intravenous. So you gotta come in, you gotta get an infusion. They carry a risk of causing small microscopic bleeds in the brain which if left undetected can cause some pretty notable side effects. In rare cases there have been deaths and and you're right, the medications have a price tag which for some given co pays related to the insurance structures can add up to a couple hundred dollars a month. So they present the typical kind of combination that many medications do of. There are benefits, namely a slowing of progression, albeit uncertainty of an individual is benefiting because we lack a biomarker that shows that. And then the various risks and hassles that I've spoken about. And so that's kind of a standard informed consent discussion.
That's sort of number one. Number two though, I think is to me a higher octane and emergent ethical issue, which is that for some these treatments are quote, too late.
And what's shown me this is I have had some patients who have the same severity as patients who were taking the treatments because that's what they have decided who have chosen not to take the treatments. And it has nothing to do with quote, they're too severe, but rather it's too late. And the too late idea is capturing this kind of feeling of what it is like to be and the sense of the desire to sort of put the brakes on things now. Is too late.
And my colleagues and I talk about this.
It's a decision that is a struggle for some because in some families, people differ, if you will, over whether it's, quote, too late.
And the patients that are relying on others, well, what do you think? And they're like, well, maybe not. And so this is a novel ethical issue that the American family is facing about when to start and, frankly, when to stop these therapies. And I have a few patients who think very intensely about when to stop. And stop is not measured by, quote, when the disease is terminal, whatever that is. I really don't quite know when the disease is terminal. So we're in for a very interesting cultural discussion that is unfolding because of these treatments, namely, when is it too late to treat and when to stop.
[00:25:36] Speaker C: And is there a best practice for guiding families through these conversations, or are we too early?
[00:25:40] Speaker A: No, there's an emergent practice. And, you know, I've talked a bit about this. I think you and I, in some contexts, I am not a fan of quality of life. I think right now our listeners have probably fallen off their metaphorical chairs when they heard me say that. But I don't think quality of life is a useful term to talk about what it's like to live with dementia, because I think it rapidly devolves into a discussion of disability and a judgment around being disabled. And I like to look at the image of Stephen Hawking, the Cambridge professor of astrophysics who held the same chair that Isaac Newton held. Stephen Hawking had a form of ALS that caused profound motoric dysfunction, though he obviously retained higher cortical function.
So he needed a wheelchair. He needed humans to assist him to bathe, dress, groom, feed, toilet, et cetera. And yet he did what he did. What was his quality of life?
And so I think the problem of talking about quality of life is it elides over the mental and focuses only on the disabilities.
And the question really is, what's the person's quality of mind? What is it like to be them?
And your ability to perceive that mind as a family member. And that ought to be the focus of how we think about whether treatment is appropriate or not. And that's something I'm doing a lot of reflection on, and I'm going to do a lot more writing on going forward to get us to think about quality of mind and not quality of life.
[00:27:08] Speaker C: So I'd like to pivot away from the treatment and talk about the sort of the ongoing narrative where we go from that moment.
[00:27:17] Speaker A: We've talked about the democratizing part, how the hell is this democratizing?
[00:27:20] Speaker C: Yeah, you get out of the clinic, you have your diagnosis, you have a care plan with a social worker or treatment plan and so on. We've, we've told a lot of stories. But what is the story as you're walking out of the clinic and when we get into democratizing dementia, what, what are we talking about here?
[00:27:35] Speaker A: Yeah, so here's what I mean. So democratizing is a concept developed in political science. So ever the, ever the dabbler that I am, you know, I started reading about this idea of democratizing. It's got a couple of senses. And the sense that I'm capturing here is this idea of, of a change in the perception of a group and a category of people, that they are part of the civic order.
In other words, they are part of what it means to be we the people. To quote from our, our Declaration of Independence and our Constitution. And if you think about it, when something, when it, when people have been democratized in this sense, the inequalities and the differences that have people perceive them as something different than others have fallen away. And the classic example of that, of course would be in America when we removed ideas of race as a way to decide who was and wasn't part of we the People, that it was no longer appropriate to say that someone who was black was not a person and could therefore be, was property who could be owned. And that became unacceptable. Now granted, we had to fight a civil war ultimately to settle that. But it's interesting, in the early 19th century, a lot of the debates around we the people were, you know, even in northern states was well, are black people part of we the people? And you could see arguments, for example, I believe it was in Illinois when the Illinois was writing its constitution for the state. Well, a black man with property is a, is among the people.
I mean, so these were actually debates that were being held and obviously all that now has fallen away. And you can see similar histories of democratizing with respect to women, you know, like that no women can have credit, women can have a job, they can be in the military. You know, just because you're sexed female doesn't mean you can't do things. You are, you are part of we the people. And I think that that's what is happening in dementia. That this ability to other people with dementia back to the lured metaphors that were used in the last election that continue to be used, etc, then I think that, that they're going to begin to fade away and it will become unacceptable to sort of other people with dementia, just like it's unacceptable to other people because of their color of their skin or their, or their, or their sex. I think those would become unacceptable. And in that, that is the sense of democratizing that I was getting at. Another group that would count on that would be people who are gay, that, you know, once upon a time they were considered, well, in a medical context, they were considered ill and in need of treatment or perversion, et cetera. And of course, again, that is also unacceptable. They're part of the civic order. We are part of the civic order. We can marry, we can hold jobs, we can't have our employment terminated because of that, et cetera. And so I think that that's the spirit of democratizing that I'm capturing here. Now. How is that happening?
Again? As I said, each individual's illness narrative that's stripped of the horror stories, that's infused with hope, that is talked about publicly, will add up such that culture will change. That is, that that will be what will start to happen here. So in the end, what starts out as technology, diagnostics and therapeutics is having a cultural transformation. And as I said, you know, Susan Sontag's essay Illness is a Metaphor, I think nicely captures that, that transition. Her other disease that she uses in addition to cancer was tuberculosis, which also had huge metaphoric qualities, particularly the 19th century until the bacillus was discovered, streptomycin came along and you know, TB now just no longer has that metaphoric capacity. It's just tuberculosis, bacillus with etc.
[00:31:25] Speaker C: And you framed a lot of democratizing dementia as not othering persons living with dementia from the rest of society, but even within that population there's, there's a lot of democratization of, of dementia care, both for patients and caregivers, along those same lines that you brought up of, in his history of medicine, along race, sex and gender, even sexual identity and so on. In terms of how the system has been treating these patients and their caregivers, how our health policy is designed to support or not support those, those different groups, I think you could, you could dig down forever and zoom all the way out at the same time to really come up with a big picture. But neurotransmissions can only run so frequently, I think.
[00:32:13] Speaker A: Oh, I think I'm trying to do every four weeks.
So. Which is why we threw out the Coda essay. Josh and I banged that one out that was in the Inquirer. So that's the sense of democratizing yeah.
[00:32:24] Speaker C: So we, we, we mentioned Dr. Josh Grill at the beginning, but you, you have a long relationship with, with Dr. Grill out on the West Coast. Before we get into the essay, could you just tell us a little bit about your, your working relationship with him?
[00:32:37] Speaker A: Yeah. So Josh, as I call him, is my, he's a good friend and buddy. We speak every Tuesday.
We have just a standard phone call around 5 o', clock, catch up on work, talk about life, et cetera. We've been doing that now for probably 10 years. I met Josh when he was a staffer at University of California, Los Angeles in the Department of Neurology there. Now he is a. A professor of neuroscience at the University of California, Irvine with an endowed chair and the director of the Mind Institute and the director of the Ralph Ever Center. And I knew him when he was just in knickers, as they say.
And anyway, so he's a good buddy and he and I have our weekly call and I was telling you about these essays and we got to chatting and it got us to thinking about the diagnostic biomarkers that I've been talking about are also available through some companies for in home testing. In other words, you can go online and order one of these biomarker tests. And so this is another sense of democratizing, which is the wide availability of something. So another way that something is democratized, this is more in a kind of a utility sense that something becomes available to everyone.
So a good example of that would be the television, which for a while was a privileged device, but then courtesy of innovations in production, etc. Is now ubiquitous. The car and related transportation devices are perhaps an example of that. And so what democratizing in this sense is getting at is the wide availability of something that in some way augments, improves or enhances people's ability to live well.
And that's another sense of democratizing. And so the availability of in home diagnostic biomarker testing for Alzheimer's is another example of democratizing. But here Josh and I drew a cautionary note and said, I don't think we're ready yet for this democratizing.
[00:34:29] Speaker C: Yeah, but we talked early on that confirmation of diagnosis can provide a lot of relief to individuals and their.
[00:34:37] Speaker A: Absolutely.
[00:34:39] Speaker C: What's the harm?
[00:34:40] Speaker A: Yeah, well, the harm starts with accuracy. The tests that are available are developed and tested in populations where the likelihood of a positive test is pretty high. And so their accuracy is pretty good.
Once you put them out in the general population, the accuracy gets much more unstable. And so if you or I, well, speak for myself, I think given my functional abilities, I have a high chance of a false positive. If my test is positive because of the likelihood that I actually currently have symptomatic disease, I think it's pretty low because I'm doing pretty good in my daily life anyway. They're just not ready in terms of their accuracy.
Moreover, even in the use in the clinical setting at least, the blood tests have an intermediate result that requires further interpretation.
And so what you've got is a test that is not as accurate has an intermediate result that you're going to put out there for wide use. And in home testing, that's not a test that's fit for purpose yet for wide use, unlike a home pregnancy test or a home HIV test or a home COVID test, et cetera. So that's one problem is accuracy and I think that's a foundational problem. But there are other problems as well.
[00:35:55] Speaker C: And you said, you know, further interpretation, what would that look like in practice?
[00:35:59] Speaker A: Well, so when I get an indeterminate intermediate result based on other aspects of the patient's history, I need to decide what further, if any, testing might be needed for that individual. A PET scan, a spinal fluid test, et cetera.
So they're not useful tests to give answers, they're useful tests to get uncertain answers or kind of force further testing. Which takes us to the other problems of the tests, namely they're embedded in an ecosystem which isn't ready for them. I mean, you know, our memory center right now is overwhelmed. Other systems are overwhelmed. We just don't have enough physicians to do this work for the people with mild cognitive impairment or dementia who need diagnosis and care.
So, you know, we'll deal with this as a society. But you know, warning, if you go out and get one of these tests and get back a result, even if it's true, you're going to face a real challenge getting the kind of care you need.
Moreover, the system that we have set up is one that you better be darn careful about how you'll be treated depending on who finds out your results.
You know, we, we do not have a robust anti discrimination system in place now for people who are asymptomatic and biomarker positive. We do for people with genes. You can't discriminate on the basis of genetic makeup. That's the Genetic Non Discrimination act, which was passed under the Obama administration.
We don't have a biomarker Non Discrimination Act.
This gets a little contentious, namely if, well, but if you're diagnosed with the disease, aren't you protected under Americans with Disabilities Act. But if Alzheimer's disease is the symptomatic condition, if someone who doesn't have symptoms have the disease, we need to work these matters out. And the way to work them out, I don't think, is to dump diagnostic biomarker tests for home testing out into the world, which is potentially happening now. It's not potentially. It is happening. There's at least six companies offering these tests online.
And then the final issue we had, I'm on a bit of a tear here that we point out in the essay and the Inquirer is they're horribly marketed. They don't even tell you like they say, like for cognitive impairment. They don't say like Alzheimer's and they don't say what it's testing for. They kind of dance around the word back to some of the stigma issues, et cetera. And a lot of them are bundled with kind of goofy, you know, you know, non proven interventions that can help slow your disease. So it's just kind of like a wild west that need not be there yet and is kind of a distraction from some of the things we have to work on as a society. What are those things? One, we need better diagnostics for asymptomatic individuals. We're getting there, we're improving them. Two, we need an infrastructure that can handle these tests. And three, here's a good example of we need to discover a treatment that we can give you that if you are test positive, I can slow down the rate of disease. And those treatments are under study right now. I guarantee you within about a year or two, you and I are going to be talking about that. But right now we're not ready for that. So it just is a good example of, I love innovation, it is creativity and it's a good example of a liberal society in action. But these are innovations that I think are a bridge too far to borrow from a movie, if you will.
[00:39:13] Speaker C: So let's say practical advice for a, we'll say 67 year old with concerns about memory. Right now. This is somebody come on in and.
[00:39:20] Speaker A: See your doctor talk about it. Yeah, I mean, that's the bottom line still, you know, not go and get one of these online tests.
You know, that's the bottom line. Someday I'll, I don't want to say I'll leave you with this, but I do think ultimately in the future, here's a prediction, mark my words, come back in 10 years, tell me if I'm right. Ultimately, I think that we will be diagnosing Alzheimer's in your own privacy of your own home, and it will proceed from there. But we are not ready yet to do that. We will be, but not yet.
[00:39:53] Speaker C: Well, I think that's just about all the time that we have. I want to say thank you to my colleague Jason here, colleague of more than a decade now, for both your ongoing work and especially these these essays both in STAT and in the Inquirer. For listeners who want to go deeper into these these essays, you'll find links to Neurotransmissions and the Philadelphia Inquirer essay in the show notes and I will turn it back to my co host, Jake Johnson. Thank you, Jason.
[00:40:19] Speaker A: Thank you, Jerry.
[00:40:24] Speaker B: Thanks for listening to this episode of the Age of Aging. This show is made possible by generous support from the Michael Nadoff Communications Hub Fund and our sponsors, the TIAA Institute and Rothkoff Law Group.
The Age of Aging is produced by the Penn Memory center in partnership with the Institute on Aging and the Penn FTD Center. Our team includes Dalielel Said, Terrence Casey, Jason Karlewish, and myself, Jake Johnson.
Contributors include Nicola Calculvecchia, Emily Largent, Alison Lynn, and Megan Sharp. Special thanks this episode to Dr. Jason Carlewish.
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