How do we communicate the link between hearing loss and cognitive decline without misleading patients? In this keynote session from the 2024 Academy of Doctors of Audiology conference, Dr. Jan Blustein dives deep into the challenge of delivering clear and ethical messages about hearing health.
She addresses the common pitfalls in public health communication, such as headlines that claim “hearing aids can slow cognitive decline by 48%,” which can oversimplify complex epidemiological data and potentially mislead patients about their personal risk and the benefits of hearing aids. Dr. Blustein revisits the fundamentals of epidemiological risk, explaining how population-level findings can differ from individual outcomes. She also explores the concept of “prevention” and how terms like this, while technically accurate, need to be handled carefully in conversations with patients. Through interactive discussions and real-world examples, this presentation provides invaluable guidance on crafting messages that are not only accurate but also ethical and patient-centered.
Whether you’re a healthcare professional or someone interested in the science of hearing and cognitive health, this session offers a fresh perspective on communicating research findings responsibly. Dr. Blustein’s insights will help ensure that patients receive the information they need to make informed decisions about their hearing and overall well-being.
Full Episode Transcript
Im Brian Taylor, senior director of audiology insignia, who’s sponsoring this session. Doctor Jan Bluestein is a professor at New York University with appointments at both the policy school and the medical school. She studies hearing loss and its consequences for health and quality of life. She’s published papers on hearing loss and stigma, the influence of hearing loss on patient physician communication, and the relationship between hearing loss and various measures of healthcare quality. She’s currently part of a nationwide team studying the feasibility and impact of providing hearing assistance in hospital emergency departments. And I know you all, this is a very hot topic. There’s a lot of misleading information out there and I’m really pleased to have Jan here, Doctor Blustein here to help us dispel some of the myths and talk about some of the facts related to this topic. So please welcome doctor Jan Bluestein. Thank you so much, Brian. Am I mic’d properly? Can you guys hear me okay? Great. Well doctor Taylor, thank you very much for the introduction. Im going to be talking today about communicating clearly and ethically about the link between hearing loss and dementia. And I want to say at the outset that this work grows out of a wonderful collaboration I have at NYU with doctor Barbara Weinstein, who gave one of the keynotes last night, and who has been here, I know before, and also doctor Josh Chodosh, who’s a geriatrician. So that’s where it comes from. And I want to say a little bit more about myself. I’m a faculty member at NYU, as Brian said, or doctor Taylor said, but also I have a long standing hearing loss and I’ve been a hearing health advocate for many years. And I want to say I love my hearing aids. I love cochlear implants. Sometimes when people hear this talk, they think that I’m saying bad things about hearing aids or the way that I’m saying bad things about hearing health. And I’m not. I’m talking about how we can communicate the scientific findings in a way that people can understand and is not misleading. And I have no conflicts to disclose. So again, my focus today is not going to be on the validity of the science, but on the issues around clarity and responsibility in communication. And that’s communication both to our patients and their families, but also to the public. We have an ethical communication, so we have an ethical responsibility to communicate. First of all, communication is important, right? We don’t want to just talk to people, we want to communicate with them. And I’ve always been impressed that audiologists understand the difference between hearing and understanding. Okay, you guys know that difference. And you don’t just talk at people. You make sure that you’re communicating with them. But this is really an ethical issue when you think about it, in patient care, because one of our obligations is to respect our patients right to make their own decisions. And if they’re not well informed, they can’t make good decisions. Beyond the patient population, the public uses messages about scientific findings as a basis for action and prioritization and policy and so on. And I want to say, because we’re talking about the link between hearing loss and dementia, this is especially important. As everybody knows, dementia is a very feared and stigmatized condition. And we want to make sure that the things we say about cognitive decline and dementia are accurate. And I’m going to talk this morning about three miscommunications, things that I think have misled audiences. The first one is that hearing aids can reduce the rate of cognitive decline by 48%. The second is that hearing loss is the largest potentially preventable risk factor for dementia. And the third is that having a hearing loss puts you at risk for cognitive decline and dementia. How many people have heard all three of these messages? Not everybody. So I’m going to talk about the source of these messages as I talk about them. So, the first miscommunication is the most recent one, which is that hearing aids can reduce the rate of cognitive decline by 48%. And this comes from the achieve trial. I believe you had Doctor Linnae speaking to you about the achieved trial last year, is that correct? Yeah. Okay, so it comes from the trial that he was talking about. The 48% figure suggests that hearing aids helped a lot, that hearing aids are really a potent weapon in our attempt to come to some kind of a prevention strategy for dementia. And that’s not so. Okay. 48% is misleading is what I’m going to say. And to understand why we need, I’m going to get into the weeds a bit. And I put this at the front end of the talk, because I know math is not everybody’s favorite thing, right. And I hope everybody has had their coffee this morning. Right? So we’re going to do a little math, and you’re going to be in tables. Actually, since you are in tables, you can take advantage of it. If you aren’t sure of something, you could ask your neighbor when I’m talking. Okay, so before we do, but before we get into the math, I want to just summarize, because some people said they might not be familiar with this 48% claim. The chief study that doctor Lin talked about last year tested the hypothesis that providing hearing aids would decrease cognitive decline. Right? So, do hearing aids decrease cognitive decline? It was a randomized study where a large group of subjects with hearing loss either got hearing aids and actually excellent audiologic care, and the other half that was randomly assigned got a healthy aging program of some kind. At the end of three years, all the subjects were given. Well, they were given cognitive tests at the beginning. At the end of three years, they were given cognitive tests, and the researchers looked to see if people who had gotten hearing aids had less decline. Right? And the finding was, they didn’t. Okay. That was the big finding. No. Okay. The two groups both declined a bit, but hearing aids didn’t forestall declined. But in a small group of subjects who were at risk, and by at risk the investigators had a lot of comorbidities and were older. And that group of subjects who were at risk, which I’m going to call the Aric, I’ll just say Eric subgroup, in that group that were at risk, their cognitive decline was lower in the group that had hearing AIDS versus the group that didn’t have hearing aids. In other words, hearing aids decreased the amount of cognitive decline in that group. And the chief investigators have repeatedly messaged that this group declined 48% less. And they’ve suggested that certainly seems like a big difference, but is it? And let’s. I’m gonna start with a comic, because that’s easing you into the math with a comic. Right? I’m gonna start with a comic that illustrates the problem of a 48% claim. And we’ll see that expressing differences as percents often makes those differences sound big, even when they aren’t. So here we go. There’s my comic. I’m going to do it in pieces. Okay? So here’s a guy who’s driving along in his sports car, and he’s saying to himself, I can’t wait to get my super whiz tv. I know the MSRP is $500. Should I go to Chip’s cheapies or Bill’s bargains? And as he’s driving along, he sees two different billboards. The first billboard says, at chips, you’ll save $4 more than it bills. And he says to himself, doesn’t seem like the prices are different in the two places. And the second one says, it chips, you’ll save 40% more than it bills. He says to himself, boy, that sounds like a big difference. He says, huh? Huh? Which billboard is right? Right. Which billboard is right? Well, it turns out they’re both right. Okay. One of them is expressing what we call an absolute difference, and the other one is expressing what we call a percent difference. So we’re going to. Now, I find there are many, many highly educated people who get confused about percent differences. So we’ll go over those. Okay, so they’re both right. And here’s a little cartoon professor who’s going to show you that really quick. She’s going to do the mathematic and she’ll find that the difference in savings is $4 more saved at chips. But you can use algebra to convert that $4 difference into a whopping 40% difference. And that sure makes it sound big. And that could help you sell tvs, right? Okay, so again, we’re talking about absolute difference. The $4 and 40% is going to be the percent difference. Are you with me? Great. Okay, here we go. Let’s do a little bit of math now in a little spreadsheet. So here we’re just going to talk about right now. We’re not going to do any numbers. We’re just going to look at letters. Okay? So here’s the way the spreadsheet’s going to look. It’s going to be laid like this. Laid out like this. There’s initial value of something like the MSRP or the initial cognitive value. There’s a follow up one, you know, after three years or what I’m going to sell it for. There’s a drop from this point to this point. There’s a difference between this and this, and there’s a percent difference here. Okay, I’m going to go really slowly through that now. So the first thing is to calculate absolute and percent differences. You’ll always start with four numbers. And then you calculate four numbers. The green numbers are the ones you start with. Right. You’re given those, and your job is to calculate this sort of as an intermediary, and then you can calculate the absolute difference and the percent difference. So our I is going to be on g and h. Can I? Go ahead. Okay. All right, so the first thing you’re going to calculate is e and f. So e is the difference between a and b, and f is the difference between c and d. We’re just calculating that so we can get to the numbers we really want. Now, here we go. Here comes the absolute difference. The difference in drop between these two. Okay. There’s some difference in the drop between these two. Right. There it is. And then there’s going to be a percent difference in the drop. And that’s the formula for percent difference. Can I show you that again really quickly? Just, you’re going to start with four numbers and you’re headed for four numbers. And I’m just, I won’t talk. I’ll let you just look. Okay, let’s do that. Now with the chips, cheapies, bills, bargains, data. So I’ve set up all of these little spreadsheets in a way that I show you the numbers in the spreadsheet, and then below I show you what those numbers mean in everyday English. So you’re given the MSRP and the store prices at the two stores, and here they are. Chips is 486, bills is 490. And then you calculate this. In between number chips, customers saved $14. And bills, customers saved $10. And what’s the difference between those chips? Customers saved $4 more than bills did. Right? I. Okay, and what’s that as a percent difference? Chips, customers save 40% more than bills do. Okay, so these things, both of them are, right. Okay, take a moment to look at this. And if you can do the mental math, convince yourself that it’s true, or else you can just believe me. And that’s interesting, isn’t it? Because this is the first billboard, the $4 more billboard is the absolute difference. It doesn’t sound like it makes a difference where you go. Right? And this one is a percent difference. And it sounds like it makes a big difference where you go. So those two ways of conveying difference, absolute difference, and percent difference, have different suggested implications to people about how important that difference is. I want you to stop and think now, I just want to make sure I’m good with time. And I think I am With people at your table, stop and think. What is the relationship between absolute difference and percent difference? That is, if you know absolute difference, can you predict percent difference? If you know percent difference, can you calculate absolute difference? Just to orient you to this table, this is the data we just saw. These are the store prices. And here are two other cases right here and here. And for example, in this case, these are the prices here. And this 40 is a difference of $40. So save $40 more at chips. And here, save 40% more at chips. Again, my question to you and the people at your table is, if you know the percent difference number, can you predict the absolute difference number? And if you know the absolute difference number, can you predict the percent difference number? Take a few minutes to get to know each other and just to chat about that. Okay let’s come back together. Let’s come back together. I think what you, I’m hoping what you concluded was, if you know one of these things, it doesn’t tell you what this is. And if you know this thing, it doesn’t tell you what this is. You’re shaking. You agree. How many people got that at their table? Hand raise. Okay, so good, so good. So that’s interesting. So if I tell you you’re going to save 40% more somewhere, you really want to know? And how much is that in dollars? Is that dollar four or dollar 40, right? You want to know that? All right, let’s go on. So let’s go. And that’s been a little bit of a math digression, so let’s get back out of that world and. Oh, no, no. That’s not miscommunication. Number one, hearing aids can reduce the rate of cognitive decline by 48%. Gee, that sounds like hearing aids are really making a big difference, but let’s find out. So, I want to give you a moment to wrap your brain around this table, which shows the percent difference from the achieved trial, which is the 48% that you’ve seen many, many times. And the absolute difference, which is analogous to the $4 in the achieved trial, is 0.191 standard deviations. That’s a fifth of a standard deviation. That’s the size of it. So this is a global cognition score, right? So, I don’t know what that is exactly. It’s a gamish of a bunch of different cognitive items, but this is the percent difference, and this is the absolute difference. Take a look at the two ways of interpreting the effect of hearing aids on cognitive decline. Okay, so, again, this is a number that you’ve seen, and it sounds like the hearing aids made a big difference. This is a number you haven’t seen. It’s a little hard to evaluate what a fifth of a standard deviation unit means. Those of you who speak standard deviation unit language probably suspect that that’s a very small difference. Okay? But let’s think more about that. So, our quandary here is that 48% sounds big, hearing aids did it. And a fifth of a standard deviation sounds small, and it doesn’t sound so good. Okay? So, to interpret differences clinical scientists usually ask themselves whether the difference is clinically meaningful. What we mean by that is, would a patient or family member be able to appreciate the difference of a fifth of a standard deviation unit of an increase or a decrease in global cognition scale? You know, people who are in the business of geriatrics would probably say no, but let’s see what the standard practice here would be to compute something that’s called the effect size statistic. Okay? Oi. Another statistic. Right? Here we go. We’re not gonna calculate this. It’s actually a really simple statistic, and it conveys the extent to which the thing that you’re looking at made a big difference. So you take all the data from your experiment, and you crank on it, and it gives you a value of d, which can be interpreted this way. If the value of d that the data gives you is 0.2. It’s a small difference. Okay. The thing made a small difference. If the value of d is five, it made a medium difference. If the value of d is eight, it made a large difference. Now, mind you, these are not hard and fast rules, but they’re generally accepted and they usually work pretty well. So let’s see what happens when we compute Cohen’s d. The statistic for the achieve Eric data for those at risk patients. And what I’ve shown you, or subjects. Sorry. What I’ve shown you here is that spreadsheet, it gets extended to show the effect size, which was 0.25. And we have Dawes and Monroe to thank for that calculation, which appeared in ear and hearing. They were the first ones to do that. So these are now the three ways of expressing the size of the effect in the achieved trial on that group. Take a moment to read these, and then maybe take a moment to discuss this with people at your table, because we have enough time. It Okay let’s come back together. The new piece. The new piece here is the effect size. The Cohen’s d is consistent with a small difference in decline. Right? We said if Cohen’s d is two. Sorry I beg your pardon? 0.2. There it is. If it’s 0.2, it’s a small effect. This is essentially 0.2. Right? It’s a small difference that the intervention made. And so this way of expressing the effect of the trial makes it sound like the hearing aids really made a big difference, this way suggests that they made a small difference. And this one, which is kind of used to adjudicate the size of this, if we’re in doubt clinically about what that size is, says. Yeah, it’s a small difference. So unfortunately, then, what the achieved trial showed was, and fortunately, because we would love to have a weapon against cognitive decline, the achieved trial showed, first of all, that there was no effect of hearing aids generally on cognitive decline. But in the subgroup that was at risk for decline, it had a small effect on cognitive decline. Now, how were the achieved results presented? If you look on the achieve website, it highlights that 48% difference. Okay? That’s what they’re highlighting. And I looked for the press releases that came with the release of the paper. The way the media covers science is they are heavily reliant on the press releases that go out with the papers. And, you know, the typical reporter doesn’t really have the scientific chops to evaluate the paper critically. So they really are relying on the press release. This is really small. Whoops. I’m trying to make this thing move, and I’ve highlighted something that I don’t think you can see. Right. Is that right? So what they’re saying is there’s two key, key takeaways. This is the top of the release. Two key takeaways. One is that it’s a big trial and it’s important. And the second one is in this study in a subgroup of older adults with hearing loss who are at higher risk for cognitive decline. Using hearing aids for three years cut cognitive decline in half. Okay. All right. It does have the 0.191. Statistic in the release. It’s on page three of the release. And that would take a very dedicated reporter to read the page three. Right. So how were the results of this study? Amplified in the media. I think you can read that. Basically the story is, the Washington Post says hearing aids may cut the risk of cognitive decline by half. Mental decline cut by half. According to the Irish Independent CNN, hearing aids may reduce your risk by half, and so on. Right. That’s what 48% is. Right. So whoops, I need trouble making this advance. Oops. Let’s go back one. Is that where we stop? Here are my conclusions about that miscommunication. Please take a moment to read those Okay, I didn’t say this before, but I want to note that actually, this issue of overstating or suggesting a very large effect using percent difference is a very widely used tactic in the pharmaceutical industry. So when a drug has a small, absolute impact, you’ll see the advertisement will say, you know, it had 50%. You know, people did 50% better, whatever. Okay, so let me talk now about miscommunication. Number two, hearing loss is the largest, potent, largest. It’s the largest potentially preventable risk factor for dementia. And this comes from the Lancet commission on dementia prevention and intervention and care. And I don’t know how familiar you folks are with the lancet, but in the medical world, it’s absolute gold. It’s the most prestigious medical journal in the world. And one of the things that they do is they provide commissions on various topics. And actually, they’ve done dementia now three times. They just came out with another one. Im sorry. And in the case of the commission on dementia, this is lengthy documents that go well beyond the issue of hearing. So hearing loss. So we’re used to thinking about hearing loss and dementia. But believe me, there’s a lot of other things that are risk or dementia. And those are summarized in those articles. And they summarize those articles. They review data on all sorts of potential causes, possible avenues for prevention. They do a big review on dementia care. So this is a big document. One of the things they do in the course of those documents is look at risk factors. And I put the scientific words here in orange cabs. Risk factors for dementia, sometimes called population attributable risk, sometimes called population attributable population. Attributable fraction. And in this separate statistic that they calculate for the report is designed to communicate to public health experts and health policy experts. It’s really insider language. Okay. It is insider language for a particular purpose, but it doesn’t say much that’s relevant to laypeople. And I’m going to talk a little bit about what it means, but it’s a puzzling sort of notion. In other words, in my view, this doesn’t convey meaningful information to your patients. But in my experience, the use of scientific jargon can be worrisome to everyday language speakers. Let’s look at a cartoon about that kind of worry. So here’s a guy who hasn’t been feeling well. He’s feeling sick, and he’s going to go to his doctor, and he goes into the clinic and he has an exam. The end of the exam, the doctor says, what is going on? You have spasmodic, episodic diaphragmatic contractions, and you have oncomycosis. And he’s looking absolutely crestfallen. Sounds bad. He says to himself, I’m doomed. And the doctor’s walking down the hall and he’s saying he’ll be fine. As I told him, he just has hiccups and toenail fungus. Right. If you’re listening to experts who use language that you don’t understand, and you’re worried you might take away a very worrisome message, right? That’s something we need to be very mindful of. So let’s go back to the second miscommunication. And the problem here is that population level risk factor, in the scientific sense, has almost nothing to do with the notion of risk that all of us understand in everyday language. The problem is that the risk factor number, which comes from a complex statistical analysis, and I’ll show you a little bit about this, is designed to communicate to public health experts and health policy makers, but it’s pretty much meaningless to lay people. So what do I mean when I say that individual risk and population level risk are different? The first thing is that the statistics speak to different audiences. Statistics are just numbers, right? So these are numbers that speak to different audiences. Patients, their families and the general public are concerned with individual risk. For example, how much more risk of dementia do I have due to my hearing loss? Or how much more risk does my family member have due to their hearing loss? Public health policy makers are concerned with something called population level risk. In this case, it summarizes a risk factor. For example, what would happen to the rate of dementia in the population if, get this, all people with hearing loss suddenly didn’t have hearing loss. So if right now, x percent of the population has dementia. If we could turn off the hearing loss in the people who have hearing loss, what would be the new percent? It’s this sort of a thought experiment. So I say that’s referring to something that’s pretty abstract. Summarizing a hypothetical scenario that is a number that in itself is derived by gathering a large set of numbers and then running a spreadsheet. Okay. And contained in that big calculation is the idea that eliminating the thing that’s the risk factor would wipe out the outcome. In other words, in this case of hearing loss, the assumption is that wiping out hearing loss would cause dementia to disappear for each individual. It’s very hard for me to understand why this would be relevant to the average person or patient might be relevant to people in public health policy, but I don’t think it really speaks to most people. Can you guys see those numbers? No. Really? Right. But I just want to orient you to this table, because this is actually the most recent Lancet report. They’ve decided that hearing loss is now responsible for 7% of the dementia. Turning off hearing loss would turn off 7% of the cases, dementia instead of nine. They changed the analysis a little bit. They added some things, but here it is from the most recent report. And I just wanted to give you a sense of how this works. In terms of calculation, this has four important columns. The first column lists the risk factors. Let me see if I can make this bigger. The first column lists the risk factors. Right? Less education, midlife hearing loss, depression, yada yada social isolation. Those are the things that are risks for dementia. Then it has the relative risk for dementia that’s associated with each of the risk factors. Then it has the risk factor prevalence. That is, what percent of the population has this condition? On this line, it’s saying less education confers a 60% increase in the risk of dementia. The 1.6 is 60%. The prevalence, they’re saying, is that 23% of people in the population have low education. And once they have all these other numbers filled in and they crank on all those numbers, it ends up that if we could turn off less education, we would have 5% of the dementia cases wiped out. The problem with analyses like this, I mean, aside from the fact that it’s really insider statistics and it’s hard to think about what it might mean to the average person, is that when you do something like this, all of the numbers are talking to each other. So if one of them is wrong, all of them are wrong. And I looked at this table. Because sometimes people put together analyses like this and they don’t really look at the data. I was really struck. So they looked at obesity here, which they claim confers a 30% increase in the risk of dementia. What’s the prevalence of obesity in the population? They say it’s 13%. And I say, that is not true. That is so not true. Right. So this number should be some number that’s very big, and this number should therefore be something that’s really big, and the whole thing needs fixing. Right. I also looked at hearing loss. I was struck by a. Hearing loss is supposed to confer a 40% increase in the risk of dementia. Yes. And. But midlife. This is midlife hearing loss. The population prevalence is supposed to be 59%. That doesn’t make sense to me. And I wondered whether that was the lifetime prevalence. But in any event, you can see I’m the kind of person who really gets into the weeds, and we really sometimes do need to get into the weeds in order to evaluate a claim. But backing out of this I guess I would say that the details are highly problematic from my perspective, but using this to communicate with people, I think, is not a good practice. So read my conclusions and we’ll come back. Actually, I think this is the most important, that when people hear something like hearing. Largest, largest, largest. They think hearing is about the worst thing you can have in terms of potentially having dementia. And that’s not right. And it’s also not a good thing to be telling people. Okay, let’s go on to number three, which is the one you hear over and over again, which is having a hearing loss puts you at risk for cognitive decline and dementia. And the source for this is many, many observational studies. And I put the risk in orange, again, to denote the scientific word. And the claim comes out of these observational studies. I just want to show what One of them looks like. So here’s. Oops, no, first we need a comic. Okay, so here we go. Here are two people with hearing loss talking to each other. Actually, they both have hearing aids in, but they’re so small you can’t see them, right? They’re talking to each other and they go to a talk and they see this. Okay, it doesn’t sound good. And then they read this in the newspaper. That doesn’t sound good for them, right? And they say to each other, we’re doomed. Okay? And one of them says, hey, hold on a minute. Exactly. What do scientists mean by risk? Right? What do scientists mean by risk? And you learned this in graduate school, but it’s one of those things that might have gotten a little bit buried. Okay, so in everyday language, we know what risk means. It’s usually understood as something that causes a bad outcome. For example, not wearing a seatbelt is a risk for injury in an auto accident. So when nonscientists, when people who haven’t taken an epidemiology class, hear something conveyed in epidemiologies, hearing loss is a risk for dementia. I think they’re prone to understanding something like this. Well, there’s hearing loss and it causes some change and it causes, I’m going to call that the dementia seed. It plants the dementia seed. Right. We don’t know what that seed is. I mean, we know very little about dementia causation. And by the way, dementia is not a disease, right? It’s not a single disease. It’s a syndrome. It’s a set of behaviors. And it’s not something that has one manifestation in the brain. There are a number of different diseases that manifest in that syndrome. So let me go back. And in any event, when non scientists hear hearing loss is a risk for dementia, they think something like this, this causes this causes this. Right? But in scientific language, risk doesn’t mean that, it just means that two things go together. So I think you remember from graduate school, correlation is not causation. Right. The fact that two things go together doesn’t mean that one causes the other. Right? And here are three true statements about dementia risk. The first one is that hearing loss is a risk for dementia. That’s true. Not being married is a risk for dementia. That’s true. Having less education is a risk for dementia. Also true. I said I was going to show you observational studies. Let’s look at what observational studies might look like for each of these. The first one is that hearing loss is a risk for cognitive decline in dementia. So, here’s an illustration of the kind of evidence that supports. And the diagram that you’re seeing is a kind of cartoon that summarizes data from several observational studies. When I say it’s a cartoon, I mean these numbers are not to be taken literally. So this is 100 on a score, and this is zero on a score. And these slopes are not exactly the exact right slopes, but it’s a cartoon. In these studies, there is no random assignment. Right. We just take people who have normal hearing and people who have hearing loss, hopefully untreated, and the study starts. And everybody is. Part of the conditions for being in the study is that you have to have normal cognition. So everyone starts up here, and then we follow people over time. So these are their scores here, and this is time here. So, over time, both groups experience some degree of cognitive decline. Right. These are the normal hearing people, and these are the people with hearing loss. Both of them experience decline, but the decline happens at a greater rate for people with hearing loss. And people with hearing loss end up with a very low cognition score. That’s consistent with dementia more often than people who have normal hearing. The findings of the study, then are that, over time, hearing loss goes with cognitive decline, and dementia. It’s correlated with. It is a risk for. Or to put it in scientific terms, people with hearing loss have a higher risk of incident. That means new onset people with hearing loss have a higher risk of incident dementia than people without hearing loss. Okay. That’s what the data would look like. Turns out, of course, people. We’ve looked at a lot of other risks for dementia, and one of them is marital status or not being married. Sorry. So here’s a very interesting. It’s very interesting that a very similar pattern has emerged in studies of that relationship. Again it’s not just hearing loss. It’s a risk. So here’s what a study of marital status and dementia look like. And again, it’s very similar to the ones with hearing loss. So you get people who are married, and you get people who are not married. You start out with them all cognitively intact, and you watch them over time, the people who are married decline. Everybody declines. But people who are married decline more slowly than people who are not married. Now, I know what you’re thinking. Marital status is really complicated. What about people who are living together? What about people who change status, like, people who start out married and end up getting divorced and so on? Believe me, the people who do these studies are aware of those problems. And the bottom line is, and there have been many, many studies of this. And here’s a systematic review and meta analysis, if you like, chasing things down that this is the case. The simple marital status is predictor of dementia. It is a risk for dementia. Not being married is a risk for dementia. And so I put this to you, in order to decrease dementia in the older population, should we issue marriage licenses to people who are not married? I don’t think so. Right. I don’t think that’s a good idea. That’s a misinterpretation of the findings. Now, being educated is also a risk for cognitive decline and dementia. And I’m going to let you read this because it’s complicated it. Okay, I want to really pull out this idea of cognitive reserve because we’re going to come back to it. So look at this again and really try and get your handle on the idea of cognitive reserve. It’s the cognitive power that you might have to resist cognitive stress. Right. So let’s look then. Im not going to show you what the education studies look like, and I want to back off a little bit and say, here we are kind of at the edge of science, because scientists know very little about the causes of various dementias. In other words, we don’t know about that dementia seed or whatever it is. But given what we know about hearing loss and what we know about other dementia risks that we’ve just seen, I want to show a plausible model of what I’m going to call an uncoupled relationship between hearing loss and cognitive decline in dementia, which leans on this idea of cognitive reserve. So, again, this is not the gospel truth. It’s just a way of thinking about it that could be true. So this is a plausible, uncoupled model of the relationship between hearing loss and dementia and of the elevated dementia risk that results from untreated hearing loss. So there are two pathways here. One is the pathway between hearing loss and reduced cognitive reserve. Hypothetically, this could go through, as Doctor Weinstein suggested last night, social isolation. Right. Then reduce brain stimulation, then reduce cognitive reserve. And I want to emphasize that cognitive reserve is a psychological notion, but it’s also a neuron notion. In other words, we know that there is a brain correlate to reduce cognitive reserve. So if you hear that people with hearing loss have weird brains, don’t get too alarmed. Okay. It could be because of that, for example. Okay, so there are some brain changes that accompany reduced cognitive reserve. It’s not just a psychological idea. And if the person, unfortunately, is on a dementia path for reasons that we don’t know, because they have the dementia seed, whatever it is, having reduced cognitive reserve affords them less ability to kind of fight back against that symptomatology. Right. So the symptomatology would manifest earlier in this theory. And of course, that’s not trivial, right? Even though hearing loss is not causing dementia having hearing loss, in this case, is allowing dementia symptoms to manifest earlier, perhaps. And that’s something that nobody would want. Okay, so we want more symptom free time. This model is an extension of that one, which shows how, hypothetically, treatment of hearing loss could stop the pathway between hearing loss and reduced cognitive decline. And in that case, people who, unfortunately have the dementia seed will proceed and develop dementia symptoms without, though. Without the reduced cognitive decline, and then presumably later than they otherwise would. Right? Did I say that right? Later than they otherwise would. Yeah. And so my conclusion is here that when we say that hearing loss is a risk for dementia, people think in terms of risks being causes, and they understand models like this. Right? We saw this model. This does plants the seed, and this happens. And there are plausible models of dementia risk in which hearing loss is independent of or uncorrelated with the dementia seed. And, for example, this is the one we just saw. I can’t blow it up for. Yeah, but we just saw this model. Okay. So in other words, there are models of risk that do not suggest that having hearing loss is a cause of that seed or plants that seed. So this morning, we’ve examined three miscommunications and take a moment to read them. I want to point out that two of these grab your attention because they suggest that there’s a big relationship between hearing loss and dementia. So 48% sounds big, and largest potential preventable risk factor sounds big. So they’re not only making a link, they’re making it sound like it’s a big thing. I think that some members of the public have gotten this dementia, this message, this message, think hearing loss. Think dementia. Okay? Just make that association. And I’ve had many conversations with colleagues and with people older people who have that impression. I have a most recent conversation was with a 75 year old, very vibrant professional woman who is married to a guy who has had hearing loss for a while. They’re well. Off. They’re professionals, they have top of the line hearing aids, and they have been living their lives ever since he was diagnosed with hearing loss, with the assumption that hearing, that dementia is looming. And this email, it was quite a story. She wrote me an email back and saying she was very glad to hear, to be disabused of the notion that dementia is looming. So that’s the way she’s been living. That’s the way that couple has been living their life. And I I just think that’s a shame. And in this email, she’s thanking me for disabusing her of the notion. But I told her, as far as dementia goes, it could happen, but it’s not because of his hearing loss. I have conversations like this a lot. I don’t know whether other people do, and I’d actually be very curious to know that. So let me back close now and talk about why I care. I said that I think this is important because good care relies on good communication. And I also said that ethical care relies on fair communication of the facts and not suggesting things that aren’t the case. But I care also because the misunderstanding that hearing loss is a harbinger of dementia concerns me as a person with hearing loss, because it affects the way we, people with hearing loss think about ourselves. It makes us more prone to dementia worry. I don’t know that you know about dementia worry, but I guess you could probably imagine what it is. And it’s highly prevalent and it really is. Casts up all over people’s lives. And then there’s the issue of self stigmatization. But I also think it affects the way as people this becomes, you know, think dementia, think hearing loss, or think hearing loss, think dementia. It affects the way we, people with hearing loss are viewed by others. And there’s a phrase under suspicion of dementia, which I think is a good one, which is like, you could be guilty. I don’t know about you, I do at least four dumb things every day, right? And actually, I get two extra ones because I have a pretty significant hearing loss. So let’s call it a six. Okay. When I do those things, I don’t want people to see my hearing aids and think dementia. I do not want that. And it’s really, to me, it seems like a real threat. So this under suspicion of a dementia makes me feel like I’m under pressure to show that I’m with it, and that’s not a good thing. On top of that, I think there’s a lot of potential in the future as this becomes more sort of a thing that everybody believes is the case, there’s a potential for discrimination in the workplace. So you are hiring someone from a long term project. You see that they have hearing aids. Maybe they’re going to get dementia. Right? And also, my pet peeve is discrimination in the long term care insurance market. So if you want to get insurance for long term care, you have to submit all of your medical information. And I can bet you that this this belief and people’s belief and understanding about this is going to lead to people with hearing loss being uninsurable, because all of the long term care insurance market cares about is whether you’re going to get dementia or not. That’s my pet peeve. Okay, so I’ve been saying that I don’t like the way some people talk about these things. And I want to talk about how a positive model I would suggest, and I would advocate pointing out the value of better hearing. Increased social engagement and maximum cognitive reserves would be my talking point. And a simple way of saying that is that hearing better helps you live better. And that’s absolutely true. As a person with hearing loss, I can say hearing better helps you live better. If a patient were to ask me about dementia causation, I would say, you know, unfortunately, we don’t know about dementia causation, but for someone who unfortunately has what we could call the dementia seed, better hearing could very well help sustain cognitive reserve. That’s possible. Or another way of saying that is that hearing better helps you think better. And I can also tell you that’s the truth. Okay, so the end. If you’d like to discuss this more, I will along with doctor Weinstein, and we will have a session tomorrow morning at 10:00 a.m. which is not going to just be us talking. It’s going to be you guys talking about this and how you’ve talked to patients about hearing loss and dementia. Thats what I’ve got. Thank you very much, and I look forward to seeing you. I hope tomorrow morning. Brian? I think we’re going to have questions now. Is that right? Come on up. Yeah. Brian’s our moderator. And we are not going to film the questions. Correct, guys, in the back? Yes. Thank you. Thanks. Any questions? Please step towards the microphone if you have a question. Oh, you matt? Yeah. Well, I’m glad I’m so crystal clear. Did you learn anything that you didn’t know before. Why don’t you come up and say what that was that you didn’t know before? I’ll give a little. Is this on? Yeah. Okay. I’ll give a little feedback that I think this was really brilliant. Ive always kind of felt how would I say, like not resentful, but, like, I think it’s a mistake to talk about dementia, because if you’re talking about a person who’s far advanced in age, it’s too late, right? If you’re talking about, say, a person who’s 60 with hearing loss in the workplace and all that, they’re not thinking to the foggy future where they might or might not have something happen to them. I think it’s far more important to talk about the advantages you get the very day you are treated. Right. Some of the things you mentioned there I can tell you stories about how I realized right away how much more cognitive reserve you get, how much less fatigue you feel when you get your hearing loss treated, how much more enjoyable social situations are. Those are actually the things that are meaningful at that moment. So thank you for highlighting that as part of this discussion. Thanks, Andy. I have a question. Most of us are not steeped in statistical knowledge but yet we see these headlines even walk around the show floor. You see some of them. How can we, as clinicians, be better consumers of this literature? Wow. Well, that’s the big question. So it’s tough, right? Because when I read these papers, I find them incredibly difficult to read. And I read papers all the time. So I can’t suggest that you go to the literature, right. Because you don’t really have you learned it at one point, but you don’t know it anymore. My suggestion is to look at people who are skeptics, look at both points of view. So some of this has been published. Some of this kind of critique is published. It’s actually hard to get critiques published. I have to noodle on that long and hard, actually, because we live now in an era where there’s so much information, we’re bombarded with it, right? So I guess look for point counterpoint kind of work. Can you think of another way? I’m absolutely stumped by the very most important, fundamental question here. Does anybody have any thoughts? Barbara? So I think the article, you might want to talk about it. The article that we wrote about the advertising. Say it again. Yeah. Okay. So you might want to talk about the publication on the amount of information on different manufacturer websites about the link between hearing loss and dementia and the benefit of hearing aids with dementia. We challenged this, we brought it to light. And a lot of the manufacturers, maybe they did not interpret the literature correctly, but they went back to the website, some of them, and they did make changes. So kind of like educating and talking about it and challenging and presenting data. I think that has been helpful. Yeah. So that was a paper that was in jama otolaryngology, which I don’t think you guys read. One of the problems with this is that there are so many different audiences. So when you write, you have to write it for. We have to write for three. We have to write for geriatricians, autolangologists, and audiologists. And we don’t always get to all of them. So what Barbara, Josh and I did was we looked at advertisements, we did a web scrape of advertisements by hearing aid manufacturers and looked at the claims and pointed out there was a very high rate of dubious claims. And that was important. And Barbara had these interactions and relationships with manufacturers who actually pulled back, which is incredible. So that could happen, right? That could happen. There’s somebody over there who’s been waiting for time to talk. Well, actually, I just wanted to thank you for, first of all, making the statistics so easy for us to understand. I think many of us who are care providers, that’s why we see patients. But to understand it, I also want to echo what Andrew said. I’ve always had a level of discomfort of talking about dementia. I have hearing loss. I’ve had it my whole life. And, you know, this is the same thing that I worry about. But I want to thank you. I would say two things. If we can take these articles that are in JAMA and things like that, and get them into our audience, in our journals as well, where we can partake of that, that would be great. And then I do one of the last things say is, I think what I hear the theme from last night and today, which I appreciate, is that overall discussion of wellness and, you know, there is so much that hearing loss does impact socially and different, and it could impact cognitive decline and things like that, but turning it to something of wellness and intervening for those patients quality of life. So I thank you for that. Thanks Jan. Thank you very much. Great talk. I think you gave an answer to the question right in the beginning. If you ever see an effect size presented as a percent, that means they weren’t happy with the effect size presented as an absolute amount. So I think your first lesson was a really good one. Thank you. Thank you for the back to basics comment, Doctor Frankenhein. Okay. Anybody else? Thank you to doctor Bluestein. Thank you.
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About the Presenter
Jan Blustein, M.D., Ph.D. is a seasoned statistics professor and researcher at New York University. Her studies on health and health care have been published in New England Journal of Medicine, JAMA, British Medical Journal, and other leading journals. For the past decade she has focused on hearing loss and its consequences for health and quality of life. She has a longstanding hearing loss, is involved in hearing loss advocacy, and has served on the board of the Hearing Loss Association of America.