Episode Transcript
[00:00:03] Speaker A: I wasn't necessarily wanting to be in a drug trial, at least not at this point. But I really feel strongly that unless people get involved, we're never going to know why some people go on to get the disease and others don't. So I wanted to make something positive come out of the experience that I had with my mother.
[00:00:30] Speaker B: Welcome to the Age of Aging, a podcast about living well with an aging brain, produced by the Penn Memory Center.
[00:00:37] Speaker C: Im Jake Johnson, and Im Terrance Casey. This is the fourth and final episode in our inaugural season of the Age of aging. We hope youve enjoyed the show so far. And if you havent heard one of our first three episodes, we recommend you go back and listen to them before starting this one.
[00:00:53] Speaker B: Today, well hear a series of stories focused on the full diagnostic experience in the case of cognitive impairment. Well hear about the diagnostic scans used in this process and how doctors use that information to come up with a diagnosis of Alzheimer's or other causes of dementia. And we'll also learn how, despite advancements in imaging, the most accurate diagnosis for these diseases is through brain autopsy. We'll hear from a couple who made the decision to donate their brains to research and their motivations for doing so.
[00:01:21] Speaker C: When it comes to Alzheimer's disease and other causes of dementia, diagnosis begins with brain imaging. And so with more on that story, heres Jake.
[00:01:37] Speaker B: One of the cornerstones of aging research and the studies done here at the PEM memory center is brain imaging. Many of us probably think of the massive MRI machines when we think of brain imaging. But theres actually a few distinct types of brain imaging methods that researchers use to study the brain. Each of these comes with slightly different procedures as well as variations in what is being captured. In order to better understand these technologies and what they might mean for study participants, we spoke to neurologist John Detra.
[00:02:05] Speaker D: Hi. My name is John Detra. I'm a professor of neurology at the University of Pennsylvania Perelman School of Medicine. I also have an appointment in radiology, and I'm a neurologist whose research focuses on brain imaging. The significance of imaging more generally is it allows us to non invasively look at brain structure and function. The brain is a particularly hard to study organ because it's encased in bone. And so you can't palpate it, you can't really see it with your eyes. And so imaging is really the main way that we understand what's going on with the structure and the function of the brain. Now, in neurodegenerative diseases like Alzheimer's disease. We can use imaging for a few different things. One is to try to establish a diagnosis because different kinds of neurodegenerative diseases produce different patterns of changes in brain structure, function and physiology. Another thing can use imaging for is to try to understand the mechanisms underlying disorders like Alzheimer's disease, because although we know a lot about it, we don't know everything about it. And being able to image changes in brain structure and function allows us to learn a little bit more about how it progresses and how it causes the kinds of deficits that we see clinically in cognition with a disease like that. And then the final thing is we can use it to study the efficacy of treatments.
Until the last few years, there weren't really any disease modifying treatments for Alzheimer's disease. But over the past few years, it looks like there are some promising treatments on the horizon. Sometimes we can get an earlier signal that the treatment is responding by looking at what it does directly to the brain.
[00:04:16] Speaker B: Lynn Chronomize is a participant in the aging brain cohort study at the Penn Memory center, which uses both MRI and PET scans to understand how the brain ages, as well as why some people develop certain dementias and others don't.
[00:04:28] Speaker A: So I lost my mother to Alzheimer's disease in 2017.
She waged a twelve year battle, and I wasn't necessarily wanting to be in a drug trial, at least not at this point. But I really feel strongly that unless people get involved, we're never going to know why some people go on to get the disease and others don't. So I wanted to make something positive come out of the experience that I had with my mother as a part.
[00:04:56] Speaker B: Of the aging brain cohort study or ABC study for short. Chronomize goes in once a year for a series of cognitive tests and undergoes either an MRI or PET scan. Chronomize said that compared to the cognitive tests the researchers give beforehand, which can involve math and memory questions, the MRI and PEt scans were the relatively easy part of the experience.
[00:05:16] Speaker A: They give you music to listen to because the MRI is the magnets and they're very loud. I did think I nodded off a little bit, but it was very, wasn't uncomfortable or anything I would recommend. You're laying on a flat table and I asked them to put something under my knees so that my back wasn't as tense.
[00:05:34] Speaker D: An MRI scan uses radio waves to generate the signals, but you can only get these MRI signals inside of a strong magnetic field. And so the biggest concern patients have about MRI is claustrophobia because the magnet is like a tube that the patient is slid into and the image is acquired at the center of the tube. It can be a bit confining in there, but for most people with advanced warning and good explanation of the experience can make it through. The MRI system doesn't just have a big magnet, but it has some additional hardware inside of it that can produce spatial variations in the magnetic field. And that's what's used to make an image out of the information. It's called spatial encoding.
When that hardware is turned on and off, which is very, very frequently during an MRI, it makes loud banging or beeping noises.
If you're a patient having an MRI, wear foam earplugs, usually, or a headphone type earplug to cut down on the noise. In PET scanning, the image signals are actually generated from inside the brain or whatever body part is being studied by the injection of a weakly radioactive tracer. So it's a molecule that is injected into the person and then goes to different parts of the body, including the brain.
It labels something specific in the brain. In the case of Alzheimer's disease, there are now tracers that can label amyloid plaque accumulation in the brain, or tau tangle accumulation in the brain. And so one of the unique things about the PET scan is that the scanner is just a detector, and it's detecting weekly radioactive signals from a tiny dose of radioactivity that's injected as part of a molecule designed to find some target and stick to it. The duration of the PET scan isn't just the scan. So the scan part where you're in the scanner takes anywhere from, say, ten minutes to an hour, depending on what is being measured. There's also the part where the tracer is injected into the person. And there's very often a waiting period between when it's injected into a vein in somebody's arm or their hand and when you scan the brain, because you need to give some time for the tracer to redistribute in the body, or in the case of Alzheimer's disease, to get into the brain.
[00:08:34] Speaker A: They come in with a syringe and they do the injection, and then you have to wait, I think, 30 minutes, and then they do the actual scan. I remember that my heart rate was increased, and that was one of the things they were monitoring, because sometimes the tau tracer causes your heart rate to increase, but you don't really notice it. That's sort of like a little side effect.
[00:08:55] Speaker B: While a more invasive procedure than mris, Detra said that PET scans can also tell scientists a lot more about what's going on in the brain.
[00:09:02] Speaker D: It's also the most sensitive imaging technique, so it can detect very, very tiny accumulations of, say, an abnormal protein or some kind of neurotransmitter. And it's really the only imaging method that has that kind of sensitivity and molecular specificity. So we can see shrinkage of the brain in a CAT scan or in an MRI scan, but we can't tell whether that shrinkage is due to the accumulation of amyloid or something else.
[00:09:37] Speaker B: What makes pet scans particularly valuable is that the tracers used can be developed to attach to different types of molecules. Not only can scientists track amyloid accumulation and tau tangles associated with Alzheimer's disease, but also conditions like brain inflammation and brain metabolism using different tracers. According to Detra, the only major downside to PET scans is their cost.
[00:10:00] Speaker D: Each time a PET scan is done, there's this special tracer that's injected that is basically a drug, but it's a radioactively labeled drug that is only weakly radioactive.
The radioactivity doesn't stick around very long. That means these drugs have to be generated and delivered to the patient in a short period of time, like usually less than a day or maybe two days. So that is quite costly. And when we think about how widespread a disorder like Alzheimer's disease is, the idea of using PET scan to screen every older person to see if they might have Alzheimer's disease becomes a little problematic in terms of the cost.
[00:10:51] Speaker B: So while PET scans offer more specificity, other brain imaging methods, like mris, are also integral for studying brain aging. While these scans can be time consuming and come with concerns of claustrophobia, it's hard to overstate how important the data they collect is to understanding these various conditions and ultimately, how we can all age as healthily as possible.
If you're an older adult with an interest in contributing to this research, are learning more about your brain. You can go to penmemorycenter.org to read all of our studies that are currently enrolling and consider signing up.
[00:11:29] Speaker C: One thing doctor Detra didn't really get into, but I think is pretty important for us to add here, is just how new all of these advancements are. I've been at the Penn Memory center now for just about a decade, and when I started here, this was not the case. We talked MRI, we talked CAT scans and so on, and we were constantly telling people that the definitive diagnosis comes post mortem. And now there is something that we can offer people that will actually help show, particularly amyloid in the brain, which is how we largely diagnose Alzheimer's disease. Though it is a fair point that just because of the production of this radio tracer and the associated cost, as of right now, this is not feasible for clinical practice across the board. But just how quickly it has grown in the last decade makes you wonder how quickly it's going to grow in the next decade.
[00:12:23] Speaker B: Yeah, I think it's the funny part about doing this podcast and working on it for so long is that so much stuff has been changing over the past few months and over the past year, and it's a fear that, as we said before, is growing. It's kind of exploding in terms of research and development. So I think we're just trying to keep up with all of the changes that are incoming.
[00:12:47] Speaker C: Doctor Dutcher made a good point, talking about how important these scans are, not just to those living with cognitive impairment, but those who may be at risk of developing it. Because we're not just trying to see if John Smith has Alzheimer's disease that is causing his dementia, but we want to know what is going on in John Smith's brain and if he goes on to develop dementia. Could those have been the warning signs that we're not yet considering? And so it's really important that even though these scans may not be available to everybody clinically, that researchers continue to use them, and that people participate in those research studies as what we call a normal control of those without cognitive impairment, so that we can try to identify those warning signs further in advance.
[00:13:30] Speaker B: I liked listening to doctor Detrow explain this, because I didn't know the difference between an MRI and a PET scan, honestly. And the fact that you're actually injected with radioactive tracers is both terrifying and very cool to me at the same time. The idea that they can design them to attach to certain molecules and track different things in your brain is very cool. But I definitely. The claustrophobia of the MRI doesn't scare me as much as getting something injected into to my body.
[00:13:59] Speaker C: Yeah, but those are both legitimate concerns out in the community. When we go out and we're trying to recruit for research studies and we're telling people everything that goes on, we do hear a lot of concern about both of those areas. And sometimes people don't think that they have any claustrophobia until they get into an MRI. And so our team has really been working to try to figure out ways that we can better prevent that issue of people learning that they are claustrophobic when they are in an MRI, and even things as simple as a video that shows what it looks like and how much space you have up to. Maybe we should have a mockup of a ring that goes around somebody's head when we're out of the health fair so we can have them try on an MRI for size. And certainly we hear the same thing with PET scans and concerns about, like, why would I put something that's radioactive into my body? But I think the greatest selling point for this is our clinicians coming out and saying, I would do this. I have done this. I would recommend this to not only my patients, but my parents. I think that that is when people get much more comfortable with it. I appreciated Lyn's stories about trying to be more comfortable in the MRI, because that is something that I witnessed a lot early on when I started here. And one particularly fond memory was as we were experimenting with different ways to make the MRI more comfortable, we had one participant who had requested that she listen to Motown, and the MRI staff was happy to oblige her. Unfortunately, they had to ask her to stop dancing during the MRI because they couldn't get a good scan out of it. And so very effective in making the MRI comfortable. Very ineffective at getting an accurate MRI. But I myself went through an MRI when we were getting a scanner back online, as we would call it. And for better or worse, I did my test scan shortly after the birth of one of my children. And though doctor Detrow was correct, it's very loud. There's banging, there's clanking. I absolutely fell asleep in there because it was the most comfortable position I'd been in a while. That is not a typical experience. I don't use that as a selling point for research, but it is possible to relax in the MRI.
When we talk about advancements in research and clinical care, particularly when it comes to imaging, I think what it really boils down to is the fact that the more we know about these diseases, the more we are realizing we don't know things. Imaging scans are not just allowing us to confirm diagnosis of Alzheimer's disease, but learn that sometimes what we have been calling Alzheimer's disease is, in fact, something different entirely, and perhaps yet to be named disease. And I think we're going to talk about that in our next story. Right?
[00:16:34] Speaker B: Yeah. There's a tendency to conflate Alzheimer's disease and dementia and think that they're the same thing, but Alzheimer's disease is actually what causes dementia, and there are many other diseases that can also cause dementia. So for our next story, we talked to doctor Lauren Massimo from the pan frontal Temporal Degeneration center about other diseases like FDD, that can cause dementia.
[00:17:03] Speaker E: Hi, my name is Lauren Massimo, and I'm an assistant professor at the University of Pennsylvania in the School of Nursing, and I co direct the Penn Frontotemporal Degeneration center. And what I'm going to talk about are non Alzheimer's types of dementia. So before I begin to get into the specifics of the various forms of non Alzheimer's dementia, I want to just back up and talk about the word dementia itself. People often come into the office and say, I've been diagnosed with dementia and I have Alzheimer's disease. What's the difference? So dementia is really just an umbrella terminal for someone who's having difficulty with their memory and their thinking, to the degree that it impairs how they function in their daily lives, meaning that they're unable to perform their daily activities in an independent fashion. So they oftentimes need help from other people. And dementia can affect our cognition, which means that can affect different domains of cognition, such as memory, which is most often affected in Alzheimer's disease. Language, executive functioning, which is your ability to plan and organize and make strategic decisions. It can affect your visual spatial function, your movement, and it can affect behavior. And so we kind of broadly think about and diagnose different forms of dementia based on these domains of cognition. Alzheimer's disease is the most common form of dementia. Now, there are several other types of dementias that I want to address, the first being vascular dementia. So, vascular dementia is probably the second most common form of dementia.
And it's a dementia that occurs oftentimes due to cardiovascular disease, the brain. So that means that there's been some damage to the blood vessels of the brain. And so you may hear people say the word mini stroke, and that's because these little tiny vessels in the brain get clogged and you can have tiny strokes. Oftentimes, these strokes are silent, where people are asymptomatic. But over time, when you accumulate enough mini strokes, you can begin to have cognitive difficulty to the degree that it causes dementia. So symptoms of many strokes may depend on the areas of the brain that are affected. But most oftentimes, these difficulties occur in their domain of executive function. So people can have difficulty with organizing and solving complex problems. They can be highly distractible, there can be slowed thinking, and sometimes they can have subtle motor symptoms that we can pick up on our neurologic exam. Oftentimes, we describe the progression of vascular dementia as stepwise, meaning that individuals deteriorate after they have a stroke, and then they're stable for some time, and then they have another mini stroke again, and they decline. They're stable for some time, have another stroke, and then decline again. So you kind of get the picture. That's compared to other neurodegenerative diseases like Alzheimer's disease and other ones that I'm going to get into, where the decline is slow and progressive over time in a curvilinear nature.
So risk factors for vascular dementia, the same things that are bad for your heart, are also bad for your brain. These include things like high blood pressure, diabetes, high cholesterol. And so that's vascular dementia. Again, probably the second most common dementia after Alzheimer's disease. Next form of dementia that I want to talk about is something called lewy body disease. And this is a really interesting form of dementia where individuals can have cognitive difficulties, and they can have motor symptoms as well. And the motor symptoms are very similar to Parkinson's disease. And so we can see individuals who have something called bradykinesia, or slowed movements. They can have a tremor that occurs at rest, and they can have a lot of stiffness in their limbs. And these are kind of the cardinal features of Parkinson's disease. As I mentioned, individuals with Lewy body disease also have cognitive features as well, where they can have fluctuating cognition and alterations in their levels of attention and alertness. And so oftentimes, these individuals can have episodes of extreme drowsiness or long periods of just staring into space. And so sometimes this even looks like a seizure disorder.
Individuals with Lewy body disease also have visual hallucinations, where they can see things that aren't there. So, for example, some of the patients that we see who have Lewy body disease will see children playing in their backyard. And what's interesting is that oftentimes, these hallucinations are non threatening.
And then individuals with Lewy body disease also have something called rem sleep behavior disorder, where they can physically act out their dreams while they're sleeping, and they can be moving a lot. There can behavior such as punching and kicking and yelling and screaming while they're sleeping.
Next, we have something called frontotemporal degeneration, which is a common cause of. Of early onset dementia. So these individuals are often younger than 65. And so that's why we call it early onset dementia, because it affects people at a young age. And just as the name implies, the condition affects the frontal and the temporal lobes of the brain, hence the name frontotemporal. There are really two major phenotypes. One is a disorder of social comportment and executive function known as behavioral variant frontotemporal degeneration. These individuals oftentimes will have problems with their social behavior, and they oftentimes violate social norms. They can be quite disinhibited. They can walk up to strangers on the street, say inappropriate things. There can be ritualistic and compulsive behaviors where they may have to eat a certain food at a certain time of day. There can be hyperoral behavior where they shovel food into their mouth very quickly, or I they have an affinity for carbohydrates and sweets. There can be loss of empathy, where they can show very little care for their loved ones, and there can be a profound loss of motivation and initiative or apathy in these individuals. There's another major phenotype of frontotemporal degeneration called primary progressive aphasia. We call it primary, meaning that it's nothing secondary aphasia or difficulty with speech and language that's due to a stroke. So that's why it's called primary progressive aphasia. And these individuals can have something called non fluent primary progressive aphasia, where they speak very, very slow, and they can have some difficulty with comprehension. And then we can have semantic variant primary progressive aphasia, where these individuals can have difficulty with understanding the meaning of objects, and they can have word finding difficulty as well. So we often get asked the question about why it's important to be able to differentiate these different forms of dementia. And I think, you know, it's important for a couple of different reasons. The first is prognosis. We know that generally, individuals who have these forms of dementia, unfortunately, will progress over time. Their symptoms will get worse, and they will, unfortunately, die from their condition. However, the rate at which that happens can differ by different types of dementia. So, for example, individuals with Lewy body disease, who may have difficulty with their cognition and if they have difficulty with their motor function, could be at increased risk for mortality.
There's also different treatments, depending on what type of dementia you have. The treatments that we give to people with Alzheimer's disease, for example, the acetylcholinesterase inhibitors, are probably inappropriate for individuals with frontotemporal degeneration. And we know that these medications can actually make behavioral symptoms worse in people who have frontotemporal degeneration. So sometimes people will come into our office and will be on these medications that they've been given for Alzheimer's. Disease. When we come to diagnose them and find out they actually have frontotemporal degeneration, we will oftentimes suggest tapering off those medications.
The other thing I think that's important for individuals with dementia to know what type of dementia they have is because that some types of dementia have stronger genetic component. And so, knowing the specific type of dementia is helpful for evaluating the risk that it's passed down to other family members. And lastly, knowing the type of dementia is really important for people if they want to participate in clinical trials. Right. So, for example, we've come a long way in Alzheimer's treatment, especially this past year, because of clinical trials. And so, before someone gets treated with an anti amyloid agent or a medicine that will target amyloid, it's really important that we know that they have amyloid in their brain and that they are diagnosed properly with Alzheimer's disease. Right. Because if we give, you know, someone with frontotemporal degeneration, amyloid medication, it's not going to be helpful. So, again, having a diagnosis where we are pretty certain of the diagnosis is really important for clinical trial participation. And so, thanks so much for your time. I hope that you found this information helpful.
[00:27:15] Speaker C: Doctor Massimo did a terrific job laying out all these different causes of cognitive impairment. And one important takeaway from this is that we can't just refer to Alzheimer's disease and dementia as interchangeable terms. One, as you mentioned, one is a disease and one is the symptom of that disease. And so just make sure that we're getting terminology correct, that we have to make sure that we're using the right words in the right places here. But more importantly, I think we need to give representation to those who are living with these other diseases. The FTD center has grown quite dramatically in the last decade that I've worked here. And a lot of that is sort of a national perspective of understanding that there are these other diseases. But at Penn, it's also making sure that we're casting a wider net, and we are making sure that those living with FTD don't feel like they're sort of being othered clinically. It's a very prevalent disease, even if it's not at the level of Alzheimer's disease. And the care and research into this group matters as much as any other.
[00:28:21] Speaker B: One thing that stood out to me about what doctor Massimo was talking about was the consequences of Alzheimer's being so well known and thought of interchangeably with dementia. Is that certain drugs that you take for Alzheimer's disease actually make FTD worse and the symptoms of FTD worse. And I thought that was fascinating, because I could totally see somebody thinking that they have Alzheimer's disease and taking these prescriptions and actually being worse off for it. So, you know, making people aware that there are many different types of diseases that can cause dementia and cognitive impairment, I think, is super important for getting a correct diagnosis and for understanding your own condition.
[00:29:03] Speaker C: Yeah. And that goes not just for the lay community and caregivers and patients dealing with these diseases, but the clinical community as well. We've talked about this in other episodes and other stories, that Alzheimer's disease, other causes of dementia are too big of a problem to be dealt with by specialists alone. And it's not enough to have the experts from the Penn Memory center and the experts from the FTD center at penniless being the ones who can definitively discuss the differences between these. We need to work on training the neurology community and make sure that this is well understood and correctly diagnosed moving forward.
But ultimately, the definitive diagnosis we know comes from brain donation from autopsy.
And this is a bit of a sensitive topic, but it's really important for us to address.
Just the other week, we had our research partner thank you lunch for the Penn Memory center. And one of the data points that stuck out to me was just how small of a percentage of those who were diagnosed with Alzheimer's disease in life were shown to have only Alzheimer's disease in death. Often they had Alzheimer's disease and vascular disease or end FTD. Some of them didn't have Alzheimer's disease at all and were incorrectly diagnosed in life. And so, though we've made a lot of advancements with the brain imaging that we had talked about earlier in the episode, we still say that the definitive diagnosis comes after death. And so for more on that, we asked our contributor, Meg McCarthy, to speak to one couple who, after some discussion between the two of them, both decided that they would donate their brains to the Penn memory center after their death. We recognize that this is a sensitive topic, and it may be hard for some people to listen to. But I can assure you the story that you're about to hear does not get into the procedure of autopsy, but rather the decision making process of one couple.
[00:31:12] Speaker E: Brain donation is a vital component to the progression of research in understanding Alzheimer's disease and related dementias. Yet deciding to donate your brain is a big and potentially complex decision.
To learn more about brain donation, I spoke with Marcia and Ed Kung. The kungs are longstanding research participants at PMC, and 15 years ago, they both committed to donating their brains for research. It's a heavy topic, but an important one. I truly had a lot of fun speaking with this husband and wife duo, and I hope you enjoy learning their story as much as I did.
I would love to start with just hearing a little bit about how each of you became involved at the center.
[00:31:59] Speaker F: Well, I think I started first with an older couple who lived in our building who were part of Penn Memory center. And over the course of time, her husband began to exhibit signs of dementia. He was the driver in the family, and she didn't want him to drive, so she asked me if I would drive them to the Penn memory center. That was my introduction. I sat in the waiting room reading the literature while they had their session. So I came back and I told Eddie about it, and we were intrigued. And then we decided to sign up for the ABC study.
Since then, during the course of the 15 years, I had suggested Penn memory center to at least three friends who were concerned about their forgetfulness. And it turned out that in all three cases, two of them Alzheimer's, one some other form of dementia. But the Penn memory center played such an important role in their ongoing problems. I think that the one advantage is that we could check our memory so that we don't have to say to each other, how's your memory these days? We still check with one another and threaten one other. I'm going to report to the fed memory center.
We do prepare for our cognitive tests in that we know that they're going to be asking for animals and for vegetables. So the first time it happened, Eddie, whose first language I could say was Chinese and doesn't cook at all or shop, was flabbergasted. So he has practiced over the years and can, from a to z, go through vegetables.
[00:34:04] Speaker E: I'm curious how you were approached about potentially donating your brains and kind of what that process was like, because I'd imagine not all research participants would even consider it.
[00:34:20] Speaker F: So about 15 years ago, my brother in law Bob found through his neurologist that he has Alzheimer's. We were able to connect him with the PeI memory Center. The then director, doctor Arnold, became his physician on urology and confirmed the diagnosis and not only took care of him, but also put him on his some trials. And this gave my sister Lee a peace of mind, because Bob is in the hands of the premier Alzheimer's center, and because what the center did for the seagulls, those were a couple that to Marshall Nation and what they did for my brother, for Bob Wei and my sister Li Wei, we thought that that would be a good payback. Lee also donated Bob Spring.
So because of that, we thought that it would be a donation to research, and that's why we joined. It felt like a natural extension of our involvement with Penn Memory center.
What's the primary motivation is the yearly ABC study. I think that we know what our memory is, deteriorating or not, but it's good to have that confirmation. Now, Bob's family, he had five siblings. Four of them, including him, had one, just progressed from mild cognitive impairment to Alzheimer's. So we are concerned about his two sons and their offsprings. We want to keep track of what can be done. What cannot be done.
[00:36:13] Speaker B: I love stories like this because I just love hearing very regular people talking about their experience with research. It really humanizes this research and shows that progress is made from normal, everyday people deciding to sign up for these studies or donate their brains. I think that's really cool. I loved hearing their relationship, and as we've been talking about, it's a heavy topic, but they're very light about it and very open about donating their brains and making jokes about it, which I thought was just very sweet to hear.
[00:36:48] Speaker C: Yeah. And participation in research really is a selfless act, no part of it more so than with brain donation. We're asking people to participate in research that by definition, they can't personally benefit from. That said, we hear a lot of people provide sort of self focused, I don't want to say selfish, because it's certainly still selfless, but self focused reasons for wanting to participate in this. We hear people talk about wanting to have their family get a definitive diagnosis for their biological children to better understand what their risks might be as they age. And you're right, the kungs have this really positive attitude about it all, that even though they had these long, serious conversations about this over time, ultimately the decision's been made. As far as when it comes to brain donation, there's nothing for them to do at this point, and so they can keep a light hearted attitude about it. And it's really quite charming, but also just a healthy perspective as they're moving forward.
That wraps up our episode on the diagnostic experience of Alzheimer's disease and other causes of dementia. But before we conclude, we have one more special announcement to end the season.
[00:38:06] Speaker B: We wanted to talk about an incredibly influential person in aging research who recently passed Doctor Murray Grossman. Among his many contributions to the field, Doctor Grossman established the Pen frontal Temporal Degeneration center worked on emerging treatments for FTD and Alzheimer's, and pioneered genetic counseling and familial outreach for FTD.
In November of 2023, the Penn FTD center held a symposium in honor of Doctor Grossman. What you'll hear is a part of the speech from one of his mentees, Doctor Lauren Massimo, who appeared early on in this episode.
[00:38:44] Speaker E: So it's truly an impossible task to be able to describe the impact that Murray Grossman has had on me, personally and professionally. Murray invested countless hours supporting my career development, and I am who I am today because of him, because he believed in me. He believed in me more than I believed in myself.
He was our cheerleader. He would say, lauren, you're a star.
When I felt even an ounce of self doubt, and oftentimes in emails, he would use an excessive amount of exclamation points when he really wanted you to believe it. And so this picture is from my PhD defense when I was so anxious and Murray just wanted me to enjoy the moment.
He thought that he could get a laugh out of me by pulling his tie out of his sweater, but that was the kind of person he was. He just wanted to put you at ease of and now I get to pay it forward to my own mentees. And in co directing the center that he founded and why, I certainly learned a great deal from his technical skills about how to conduct rigorous science to maintain my own lab within the center. It was really Murray's soft skills, which he would hate for me to say that soft or he wasn't soft, but it really was his soft skills that made him a great mentor. He was exceptionally kind and cared so deeply about each and every one of us. He started every meeting asking me about how my family was doing, and he appreciated the very busy life that I had outside of the lab. As a mom of four young kids, I once heard someone say that the mark of a good mentor is hearing his voice in the back of your head. And I hear you, Murray, loud and clear. And I am forever grateful. Thank you.
[00:40:41] Speaker C: Thanks for listening to this episode of the Age of Aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD center.
[00:40:54] Speaker B: Contributors include myself and Terence Casey, as well as Nicolette Kalkoveckia, Marie Ingenieri, Jason Carlos, Kate Kearney, Emily Largent, Meg McCarthy, and Olivia Vizzella.
[00:41:06] Speaker C: This concludes our inaugural season of the Age of Aging podcast. We'd love to hear your feedback about what you liked and what we could be doing differently moving forward. We already have a lot of ideas for a season two or how we could potentially make this a more frequent recurring podcast, but we'd love to hear your thoughts. Check the show notes for ways to give feedback, or you can reach out to us directly on penmemorycenter.org.
thanks for listening.
