Dementia as a Cause of Death

October 17, 2022

Causes of death were reclassified by the CDC to include contributing factors such as dementia. These changes resulted in dementia jumping up from the 8th cause of death in 2000 to the 6th cause of death in 2018 (and the 5th cause of death among older adults). In this episode we’ll talk with Dr. Bryan James from Rush University about dementia as a cause of death (versus contributing factor).

DISCLAIMER: In this episode we are going to be talking about research on dementia and mortality. Because research transcribes human experiences into cold numbers it tends to objectify real human conditions such as death. This can come off as insensitive if it hits close to home. Therefore, if you or someone you care for is a person living with Alzheimer’s disease you may not want to listen to this episode.

Transcript

Matt Davis:

Welcome to season two of Minding Memory. We're going to start this season off with the discussion of what's known about Alzheimer's disease as a cause of death. As you likely know, Alzheimer's disease is the most common cause of dementia, but first, a quick disclaimer. Today, we're going to be talking about research on dementia and mortality. Because research transcribes human experiences into cold numbers, it tends to objectify real human conditions, such as death. This can come off as insensitive if it hits close to home. Therefore, if you or someone you care for is a person living with Alzheimer's disease, you may not want to listen to this episode.

Matt Davis:

Okay. A little background information. Relatively recently, the way the Centers for Disease Control and Prevention classify cause of death was changed to incorporate contributing factors such as Alzheimer's disease. From 2000 to 2019, Alzheimer's has risen from the eighth to the sixth leading cause of death. And among just older adults, Alzheimer's is considered the fifth leading cause of death. The estimated total number of Americans who die each year from Alzheimer's varies widely from approximately 100 to 500,000, depending on the method used. Getting your arms around what's known about Alzheimer's disease and mortality is tricky because clearly dying from Alzheimer's versus dying with Alzheimer's are two different things. In this episode, we'll try to unpack some of this. I'm Matt Davis.

Donovan Maust:

And I'm Donovan Maust.

Matt Davis:

You're listening to Minding Memory, a podcast devoted to exploring research on Alzheimer's disease and other related dementias. Today we're joined by Dr. Bryan James. Dr. James is an associate professor in the department of internal medicine at Rush Medical College and an epidemiologist at the Rush Alzheimer's Disease Center. His research focuses on identifying risk factors for Alzheimer's disease, dementia and cognitive decline at the population level. Dr. James is also the host of the podcast Epidemiology Counts. Each episode delves into a different disease or health condition and talks about what's known and unknown about it. He's here today, though, to talk with us about some of his own research on Alzheimer's disease and mortality. Bryan, thanks so much for joining us.

Dr. James:

Thank you so much for having me. This is very exciting.

Matt Davis:

One of the best sources of information on the public health implications of Alzheimer's disease is the annual Alzheimer's association report. It's a lengthy report, but with a lot of pictures that summarizes the epidemiology of Alzheimer's, costs of care and overall impact on society at large. Now, the report doesn't list any authors as part of the formal citation in PubMed, but if you look way in the back, you'll see a handful of individuals listed in the acknowledgement section. Specifically, in the 2021 Alzheimer's disease facts and figures report, you'll see an acknowledgement of Dr. James's contribution. In addition, Dr. James authored a highly cited paper titled Contribution of Alzheimer's Disease to Mortality in the United States that was published in the Journal of Neurology. The study used longitudinal data from a couple different cohorts to examine Alzheimer's disease and death. Using estimates from the cohorts, Bryan and his colleagues were able to extrapolate the findings to the US population.

Dr. James:

Thanks for that introduction. I will say that the mortality section of the Alzheimer's facts and figures report that you mentioned has a lot of what we're going to be talking about today, summarized very neatly.

Matt Davis:

So just to start things off in general, why do you think it's important to determine how many people die from a disease?

Dr. James:

Yeah, great question. So, a lot of how we determine the burden of diseases and which diseases deserve the most attention, the most funding, the most research priority, the most government attention, it often has to do with how many people die from that disease. If a disease is a major killer, that obviously is something that sparks our interest as something as a society want to do something about. So if you're going to be making priority decisions on who gets funding or which diseases get funded based on things like how many people die from that disease, you want to be as accurate as possible. And so as an Alzheimer's disease researcher myself, I think it's imperative that we have a good idea of the contribution of this disease to mortality in the United States.

Matt Davis:

And mortality is not the only way that you could measure burden, right?

Dr. James:

Absolutely not, very important point to state up front. We're going to be talking about mortality today, but obviously living with the disease, family members, seeing their loved ones suffer through the disease, the morbidity of the disease is just as important, if not more than the mortality. So this discussion's on mortality, but there's so much more to it when you talk about the burden of Alzheimer's.

Donovan Maust:

So as an epidemiologist, how do you actually go about counting how many people die from the disease?

Dr. James:

Yeah, so the traditional way is through the surveillance of death certificate records in the United States. So we literally every year count up what's written on people's death certificates and we get a number for every type of cause of death and we rank them. And based on that, as was said in the intro, Alzheimer's disease is the sixth leading cause of death, which I think in, I think, 2019 is the most recent year of data that I saw from the CDC contributed to about 120,000 deaths based on what's written on people's death certificates.

Donovan Maust:

So who actually completes the death certificates and who collects them? Where do they go?

Dr. James:

Oh, wow. Yeah, so that's a good question that may be beyond... Well, I can tell you who fills them out, it's clinicians, the people who are there at the time of death. Someone is tasked with the job of determining what the cause of death and writing that on the death certificate. Now that of course means that to have Alzheimer's on that death certificate, that person who writes that death certificate needs to know the history of the person that has departed and has to know that they had an Alzheimer's diagnosis that's contributing to what happened. Unfortunately, Alzheimer's disease is underdiagnosed, so a lot of people are living with this disease that don't even know they have it. They've never been diagnosed, so that's not going to make it on the death certificate. Even if they were diagnosed, the person who's filling it out may not be their primary care person. And they may not know. So there's a lot of reasons why Alzheimer's may not actually show up on a death certificate, even if it did contribute to that person's death.

Matt Davis:

I have a really simple question for all the non-clinicians, non-epidemiologists out there. What's the difference between a death certificate and a medical examiner's report?

Dr. James:

Yeah. See, again, I'm not a clinician, so this is not my area of expertise, but as I understand, every person who dies in the United States in a situation where it's recorded will have a death certificate provided. And I think the medical examiner report, I think, is only requested in certain circumstances. I don't know when those circumstances are, so that's not what I'm here on your podcast to say, but I will tell you that the surveillance we're talking about when you're looking at the official CDC numbers of deaths come from these official US death certificates.

Matt Davis:

Maybe Donovan knows. Do you know the difference between a-

Donovan Maust:

So I think examiner would be if an autopsy is requested, for some reason. Whereas, everybody has a death certificate and only certain people would go on to have a report from a medical examiner.

Dr. James:

Yeah. And, and not to go too deeply into this because we could really spent a lot of time on it, but when I'm talking about someone dying from Alzheimer's disease, it's based on clinical symptoms. So almost no one who has Alzheimer's on their death certificate had an autopsy that actually went in and looked at their brain and determined, oh, they got the plaques and entangles of Alzheimer's, that's why I'm putting Alzheimer's on their death certificate. It's based on clinical symptoms.

Donovan Maust:

I was just looking and it was surprisingly a small percentage of people actually get autopsies that die of diseases. It's surprisingly low. I didn't realize how low it was.

Dr. James:

Yes, exactly. So that's an important point. This is not autopsy-based definition of death from Alzheimer's.

Matt Davis:

So using something like death certificates and thinking about Alzheimer's disease, so what are the problems with using that approach?

Dr. James:

Yeah. It's pretty well-documented that death certificates undercount diseases like Alzheimer's disease. Maybe Alzheimer's disease might be one of the most infamous one in terms of undercounting. And that's because, I mean, I already mentioned some of the reasons there's a lot of people living in the United States that have never actually received a dementia diagnosis or an Alzheimer's diagnosis. It's an insidious disease that starts... The dementing process can start years to decades before you actually die. So there's a long period of time between say your initial diagnosis if you get one and when you actually die. And there's a lot of changes to your health status that happen in the meantime, as you're suffering through the moderate-to-severe stages of Alzheimer's disease that contribute to your death as well. So there's a whole chain of causation for most people who die of Alzheimer's disease and some of those more proximal causes of death.

Dr. James:

So for example, if the disease spreads to the parts of your brain that control your swallowing, that control your breathing, and then you aspirate or you have respiratory disease, you catch pneumonia, that's how many, many people with Alzheimer's disease pass away. And some of those more proximal causes may be what's actually written on the death certificate and Alzheimer's may be left off.

Dr. James:

So because of that, it's pretty clear, like I said, there's been quite a number of studies showing that Alzheimer's is undercounted as a cause of death. But on top of it, if you just take a step back and look at the numbers of how many people are living with Alzheimer's in the US, we estimated in the last facts and figures report, I think, in the new one that's about to come out for 2022, that about 6.5 million Americans are living with Alzheimer's disease. And then you see about a 100,000 per year are dying according to death certificates. Now we know this is a 100% fatal disease. As of now, no one's ever gotten Alzheimer's disease and then cured it and lived through it. So at some point, unfortunately, based on current prevention and treatment, it is a 100% fatal disease. So common sense wise, how could only a 100,000 people be passing away a year from Alzheimer's when over six million people are living with it?

Matt Davis:

It sounds complicated. I mean, just thinking through what it might look like for someone who passes away who has Alzheimer's disease. I mean, I think there's this desire that you want some mutually exclusive cause of death and it's just not that simple in reality when you have these multiple comorbidities and other things that all kind of-

Dr. James:

Absolutely. That's the problem that death certificates try to put every death into a neat box. They try to say this is the reason you died. But for those of us who study chronic diseases, not just Alzheimer's heart disease, the majority of Americans die of chronic disease these days until COVID came along that is, but let's table COVID for the moment. Chronic disease kills a lot of older Americans. And there's usually a chain of causation. Most people die with multiple comorbidities in their seventies, eighties, and nineties. And so which one of those comorbidities are you going to say is the cause of death? It's difficult. It's probably all of them contributed some ways. So just trying to put everything into a box may give short shrift to some of these diseases that are further, more distal from that actual day that people pass away.

Donovan Maust:

I think one point is that death certificate data is in some ways another source of administrative data, that subject to all of the issues that you can get in administrative data. And so just the way that dementia is left out of a lot of Medicare encounters, even though people really do have dementia, just the same way it's left off of the death certificates, so it's definitely not a perfect data source.

Dr. James:

That's a good point. And there's actually been evidence that over the last 10 to 20 years, we see that more and more death certificates every year are listing Alzheimer's disease as a cause of death, whether that's due to just more and more people dying of it or rather the medical establishment recognizing it as a cause of death for more and more people, a contributing factor. I think there's evidence of both of those things happening. And so it is being recognized more and more as a cause of death. So if you look at trends based just on death certificates, you've got the problem exactly that you say of these secular trends in administrative data collection and when a disease crosses a threshold to actually make it onto a death certificate.

Matt Davis:

So perhaps a question for both Bryan and Donovan as a physician and for our listeners, just to ask it directly, from a biological perspective, can Alzheimer's disease cause death?

Donovan Maust:

Yeah. I mean, so I think that in the sense of does Alzheimer's disease attack your heart and make it stop beating? No, it doesn't cause death like that. But I think Bryan’s example was probably one of the best ones where it can cause difficulty with something like swallowing. And so if you're not able to swallow to sequence the complex events that take food from your mouth down to your stomach, you can aspirate or get food into your lungs that leads to developing pneumonia. And so that's probably one of the most common ways that you see Alzheimer's as a contributing factor, where maybe on the death certificate it says the person died of pneumonia, but very clearly the Alzheimer's dementia and the changes in the brain were a very important fundamental contributing cause. So in that way, that's how I think of Alzheimer's as a cause of death.

Dr. James:

Right. It sets you up to die of one of these more proximal causes. And pneumonia, which you just mentioned, is the most commonly identified immediate cause of death on death certificates of people who die with Alzheimer's.

Matt Davis:

When you count deaths and try to attribute them to Alzheimer's, do people go far enough to actually get into the specific mechanisms, like eating difficulties or pneumonia? Or is it if Alzheimer's is there, it counts?

Dr. James:

Yeah. So the way the death certificate looks is they have four lines. You have the immediate cause that'll be aspiration, pneumonia, whatever. And then there's a couple more lines. And then there's the underlying cause, which is the last line. And if you put Alzheimer's there, they're going to count it as the underlying cause of that person's death. And it's going to go in the Alzheimer's box. And I also want to say, and I have to say this every time I talk about this, that I don't want it to come across as if I am judging how death certificates are filled out. I did a little bit of press on the paper that, well, I did a lot of press, actually, it got a lot of attention on the paper that we're about to talk about, but people wanted me to say, "Are you saying that people need to learn how to fill out death certificates better?" And I'm like, "No, that's not, that's not the moral of the story here."

Dr. James:

I think people are doing as well as they possibly can with the information presented to them. What I'm saying is that counting the number of people who die from this disease based only on what's on their death certificate is going to under represent the actual burden of mortality. So it's a piece of information. It's probably the say like the floor, it's probably the floor in terms of how many people die from Alzheimer's or somewhere, maybe not the exact floor, but somewhere closer to the floor. And then there are other techniques that we can talk about that may better represent how many people are actually having a death that where Alzheimer's has something to do with it.

Donovan Maust:

I mean, so I'll say as a physician, I definitely could have been prepared a little bit better for how to fill these things out. But I think even in a perfect world, so just looking at it under the cause of death section, it says enter the chain of events, diseases, injuries, or complications that directly cause the death. So even if you do that perfectly, though, you could have some variability and person A says, "Okay, these two things were in the chain" and person B says, "No, no, I think these five or six things were in the chain." So even if people are filling it out perfectly, there's going to be variation about what gets included or doesn't get included.

Dr. James:

Yeah, which I think is the nature of the game. It's very difficult for the reasons that I've talked about to try to list every single cause of death. There's a whole chain of causation that happens that eventually leads someone to crossing that threshold. But if the person wasn't lying in that hospital bed or in that nursing home with dementia, would they have been without the ability to feed themselves or care for themselves? Would they have swallowed or would they have aspirated and led to their passing that day? I would argue, no.

Dr. James:

I mean, to make an analogy, we're seeing the same thing happen in this COVID pandemic and that's a much more proximal cause of death. You had a lot of COVID deniers who were saying if you look at the CDC table of comorbidities that people had who died of Alzheimer's disease, they're like, "Oh, look at this, only 3% of people died without any comorbidity so therefore, COVID actually only killed 3% of these deaths that we're saying are COVID deaths." That's absolutely wrong. What we know is that people with other comorbidities are more vulnerable if they catch COVID to passing away from it and that's the case with almost every disease. And also we know that older people who were more likely, at least in the beginning of the pandemic, to be catching the disease and older people in this country are highly likely to have one, two or three comorbidities that they're living with.

Matt Davis:

So you've alluded to using a different approach in your study. Are you ready to segue into that?

Dr. James:

I'm ready if you are.

Matt Davis:

Yeah, let's hear about it. How did you do it?

Dr. James:

Yeah, so I will say this study is going on eight years old now, but we're trying to update it, so look out for that in the next year or two. But what we did was we said, "Let's get away from what's written on death certificates. We're not going to even bring that information into this. Instead of looking backwards from the time of death, we're actually going to look forward." At Rush, we have a number of prospective cohort studies. Those of you are epidemiologists out there know exactly what I'm talking about. And the people in our studies are recruited without any known dementia. So these are people in their seventies... Well, as I'll talk about, we don't have that many people in our sixties, but seventies, eighties, and nineties who are recruited into our study without any known dementia.

Dr. James:

We follow them over time and we do an annual cognitive assessment on people. And we actually determine every year, whether we think they have normal cognition or they have MCI, mild cognitive impairment, or they have dementia. And then we say dementia of the Alzheimer's type or another type of dementia. But I will say that most of the people in our study, based on our definition, it's not an exclusionary definition. So if we think Alzheimer's contributed, we're going to give you that label of Alzheimer's dementia. So we see how many people develop Alzheimer's disease over time and then we see how many people pass away and you can actually calculate the hazard ratio of dying from incident Alzheimer's disease. Okay. And it's really important to do it that way with incident Alzheimer's disease because if you only use prevalent Alzheimer's disease, like if you did a study where you said, "All right, here's a bunch of people who already have Alzheimer's," you're not going to have, in that study design, people who died rapidly after developing Alzheimer's.

Dr. James:

So if Alzheimer's was leading to people dying within a year or two, they may not be in your study. So to really get the accurate picture... The beauty of our study design is that we had incident dementia and we followed people annually so that you could see within a year whether they developed Alzheimer's disease or not. That's important because if you have a study design with four or five years in between those cognitive assessments, someone may have developed Alzheimer's and passed away before you even got to measure them or count them.

Matt Davis:

You mentioned how a lot of people go on, they don't even know they have it, but your study obviously measured it. [crosstalk 00:22:05]

Dr. James:

In our study, if your doctor ever told you or not, doesn't matter because we are going to find out if you have it or not. So you get a 100% observation of both Alzheimer's disease and mortality because these are autopsy studies. So everyone who dies in the two studies that we use as the Rush Memory and Aging Project and the Religious Order Study, everyone who's enrolled into those studies agrees to donate their brains and other tissues to science at the time of death. So they agree to have someone in their family or religious convent or wherever there they are alert us immediately within a day of their passing. And, of course, we miss a few, but then we also have the national death index where we check on people quarterly. So I would say we have pretty close to 100% ascertainment of mortality in our studies.

Donovan Maust:

And how did your findings compare to what might be suggested if you were looking at death certificates? What's the difference?

Dr. James:

So I haven't gotten to one important part. What do we do then with these hazard ratios of mortality? So I didn't mention what we did was we conducted a population attributable fraction. So we said of all of the mortality that we see, all of the death we see, what portion of them, what fraction would we say are attributable to having developed Alzheimer's disease? So you get that population attributable fraction for the age groups that we had. And for our study, it was 75 to 84 and 85 and older. We didn't have enough people dying in the below 75 age group to feel comfortable calculating the attributable fraction in that group. So everything I'm saying only applies to age 75 and older. So just keep that in mind.

Dr. James:

And then what we did is to get an actual number, we took that attributable fraction percentage and we up weighted it to the general population. We said, how many people died in these age groups in the United States in the year that we were doing it, which was again, eight years ago, I think it was 2010 since this data and we applied those fractions to get a number of deaths that we think Alzheimer's disease contributed to. So the punchline is we got a number about approximately 500,000 deaths. So again, so I said 120,000 deaths are written on death certificates, that's in 2019. At the time that we wrote this study, again, it was 2010 data and in 2010, it was only like 85,000 deaths on people's death certificates that said Alzheimer's disease. So this is quite a difference, 500,000 deaths compared to 85,000 deaths.

Matt Davis:

I mean, you said you're updating it. I mean, the risk of death is probably, I assume it's not going to change, but the population characteristics are going to change that might change the total number.

Dr. James:

Right. We have updated census data that we can update to. We're hoping to bring in... We did almost nothing with race and ethnicity on the original. We literally just looked at age and adjusted for gender and some other risk factors, but we didn't really bring in race, ethnicity, which we're hoping to bring that in. We're hoping to look at differentials by gender as we go forward. And we're hoping to have enough people in that younger age group to hopefully get a number calculated for that 65 to 74 group.

Matt Davis:

You're going to have to come back on and talk about racing at this point.

Dr. James:

I would love to. I want to say, though, that number... Okay, well, we can talk a lot about this, but I just want to make sure we're comparing apples to apples. So I'm not saying that we believe 500,000 deaths should have Alzheimer's disease written on their death certificates. I'm not necessarily saying that. I'm saying that we think a lot more deaths had Alzheimer's disease contributing to it than what makes it onto people's death certificates, a lot more.

Donovan Maust:

And just to be clear, you are specifically talking about Alzheimer's dementia?

Dr. James:

Yeah. Good question. So we did it again with just any all cause dementia and we got very similar numbers. Again, the vast majority of people that we say have dementia in our studies are people that we say of Alzheimer's dementia. We do it a little bit differently. There's some debate about this, but we don't do an exclusionary dementia. So you don't have to either have Alzheimer's or have vascular, you can have both because this is beyond the scope of this podcast, but one of the things that our center has contributed to the literature quite a bit on is that when you actually look into people's brains, when you do these autopsies, people don't just have one contributing disease. They got Alzheimer's, they got minis strokes, they got vascular disease, they got Lewy body. So there are all sorts of combinations of things that contribute to their dementia.

Dr. James:

Again, very analogous to what we're talking about, trying to put things in a neat little box doesn't really match up to maybe reality with dementia. And actually, if you go to this study that we're talking about in the discussion, I got to put on my philosophy hat a little bit and make this analogous argument here. We in the field of dementia have accepted this idea of mixed dementia, that it's not just Alzheimer's or just vascular disease. It's a combination of things that can lead to dementia. So there's this concept of mixed dementia. And so I'm arguing for the concept of mixed mortality.

Dr. James:

So yeah, I mean, don't get me wrong. We need death certificates. We need accounts. We need to put things in a bucket so that at a very basic population surveillance level, we have an idea of the diseases that are killing the most people and when they go up and when they go down, but if you really want to look at the burden of disease, you have to be realistic about how people die. And you have to embrace the fact that this concept of mixed mortality is going on. Most people who die probably have five or six things contributing to them. All of those things added some element of their risk of dying and something put them over the edge. If those other things weren't weren't present, they probably wouldn't have died on that given day.

Matt Davis:

It makes a lot of sense to look at like Alzheimer's as a contributor. It makes so much sense now to hear you talk about this and I must say that you must have made so many researchers so happy, they must all cite your paper in the first part of their grant application.

Dr. James:

Oh, well, please do everyone. Well, it is a very highly cited paper and I think it does make it into a lot of intros. And for that, I am very thankful. And I hope that I can keep contributing with this follow up paper. I just do want to make the point though, that I think, again, going to this apples to apples rather than apples to orange comparison, I think that one thing that I don't like that's come from this is, and I'm kind of guilty of it because I went back and read my conclusion and I'm like, yeah, I kind of say this here, but, but the problem is you can't compare that 500,000 directly to the number of people who die of other diseases like cancer or heart disease based on what's on their death certificates because if you did the attributable fraction thing that we did for something like heart disease, you're probably going to get more than what's on their death certificates too. You're going to get a larger number.

Dr. James:

And one of the things that our study has been criticized about, although I don't know if it's a valid criticism, we can debate, is that the attributable risk fraction method, if you add them all up for different diseases, it sums to more than a hundred percent. So you're like, oh, well, how can you compare these things? But my point is if you're under the context of mixed mortality and you're like, yeah, it should be more than a hundred percent because not only this disease was contributing, but also this disease was contributing. So they overlap, so you can't make them sum to a hundred percent because that means you have to put everything into one bucket.

Matt Davis:

It's that non-mutually exclusive thing.

Dr. James:

They are non-mutually exclusive. Exactly.

Matt Davis:

Did you consider it all kicking out deaths that were extraneous stuff like MI and other things to try to clean it up at all?

Dr. James:

That's an interesting point that people have asked us about. Again, we don't have access to people's death certificates. I should tell you that upfront. So we don't actually have at the time of writing that. Now we could do something maybe a little bit different, cause we have Medicare records that are linked, but at the time, we didn't have any information on why someone said that this person died, so I couldn't actually do that. Now that we have people's Medicare records, we can totally do that. And we can maybe try to clean it up a little. But again, the question there though, is what do you throw out? Because if someone had an MI, but they've been in a hospital bed suffering from Alzheimer's for two years, did that Alzheimer's not contribute to them developing the MI?

Matt Davis:

It's a slippery slope.

Dr. James:

It's a slippery slope, exactly.

Donovan Maust:

Outside of academic citations, where have you seen the impact of this work?

Dr. James:

Oh, thank you for asking that. That's a great question. One of the coolest experiences of my career is that I got to actually go lobby Congress based on the data that we wrote up in this paper and had an amazing experience. Nancy Pelosi was literally standing right in front of me. She introduced this group of sciences is going to tell us why we should care about Alzheimer's. And I live in Illinois, so I got to talk to Dick Durbin's people and present the case that more people die from Alzheimer's disease than maybe the numbers show. And I am not in any way claiming that my lobbying contributed to this, but I will say that within a year or two, the national Alzheimer's plan was actually passed.

Dr. James:

So what I was saying and what a number of different researchers and lobbyists were saying, I don't know if I should say lobbyists, is that like a bad word these days? Advocacy organizations. They really, I think, got through to Congress and said this is a much bigger disease than we're giving a shrift to, not just based on how many people die from it, but from all sorts of things. And if you looked at the funding that Alzheimer's was getting at the time, it was minuscule compared to a lot of other diseases that had comparable numbers. So I think now with this huge, amazing, I'm so thankful for it, surge in funding for Alzheimer's research and care that Congress has approved, it's becoming more proportionate to the actual burden in the United States.

Matt Davis:

What a great story. Those of us that do research, we're just in this churn of turning out papers that every once in a while you reminded that you have a paper like this, that actually is supposed to do something, it's supposed to make something better and call attention to a problem.

Dr. James:

It was a very rewarding experience that I'm so thankful for. Yeah.

Matt Davis:

So this has been great and gives us a lot to think about and I'm sure our listeners will enjoy it, but last but importantly, could you tell us a little bit more about your podcast?

Dr. James:

Oh yeah. So Epidemiology Counts is one of the two official podcasts of the Society for Epidemiologic Research. You can find it anywhere you get podcasts. I listen to mine on Spotify, but wherever you do, and please subscribe. I have so much fun doing it. My co-host Ghassan Hamra and I, we interview experts in all sorts of different... We've actually never done a dementia one because it's too near and dear to my heart. I don't know if I'm ready to go there yet, but we tackle a health topic in every single episode. And the idea of it is that we wanted to discuss health, do a deep dive into a health research topic for the general public because it is geared towards the general public and not have to go through the lens of media.

Dr. James:

So right now, how do you get your information out of the ivory tower into the hands of the people that actually need that health information? We're dependent on the media writing up stories or doing an interview with us, which is great. We love that, but we also know the problems with that. You've got an editor who gives it a headline and sometimes those headlines don't match up with what you actually want to say in their little click bait or sensationalist. And so we wanted the opportunity for people to talk about their research and everything about a topic directly to people in a way that they can digest. We've done seven COVID ones. Our first COVID one was when there were 11 cases in the US, so it's been crazy to see every time we record one, how much things have changed, everything from COVID to residential segregation and how that affects health to screen time to depression, name it. We're trying to cover every single health topic you can think of.

Matt Davis:

And we love the title of your podcast too. It's hard to come up with a good title.

Dr. James:

Oh, I appreciate that.

Matt Davis:

Epidemiologists, they really do work hard for those numerator accounts.

Dr. James:

I'm glad you liked that. Now we had a meeting with, oh my gosh, I'm going to forget her name. I had the opportunity to meet with the host of Invisibilia. God, how am I forgetting your name on NPR? And we were like, "Yeah, I'll give us some tips on how to do this podcast thing." This was a couple years ago. And she was like, "Well, the first thing you need to do, if you want to expand your capture is get rid of that name. It's terrible." We were like, "Well, we need epidemiology in the title. That's like one of the main things we're trying to do here." And she's like, "No, you need something catchy." There's a podcast This Podcast Will Kill You. Have you all heard that one? It's basically an epidemiology podcast. And she's like, "Now that's a catchy title." So sure, sure. But we want epidemiology in the [inaudible 00:36:30].

Matt Davis:

This has been great. Bryan, thanks so much for joining us.

Dr. James:

Thank you so much.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple podcasts, Spotify and SoundCloud, as well as directly from us @capra.med.umish.edu, where a full transcript of this episode is also available. On our website, you'll also find links to our seminar series and data products we've created for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlanga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at uofmhealth.org/podcast. Support for this podcast comes from the National Institute on Aging at the National Institute of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represents the views of the NIH or the University of Michigan. Thanks for joining us and we'll be back soon.

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