What is it Like to be Dan?

Episode 3 October 14, 2025 00:59:33
What is it Like to be Dan?
Age of Aging
What is it Like to be Dan?

Oct 14 2025 | 00:59:33

/

Show Notes

Over the past year, the Age of Aging has spoken with expert clinicians who study the brain, as well as individuals living with neurodegenerative diseases like Alzheimer’s. We believe that these two perspectives are essential for fully understanding dementia in 2025. 

In today’s episode, we hear from someone who can speak to both perspectives. 

Dr. Daniel Gibbs is a retired neurologist and author currently living with Alzheimer’s disease. Joined by his wife and caregiver, Lois Seed, he sat down with Age of Aging Executive Producer Dr. Jason Karlawish to discuss Dan’s experience. While the two physicians have had repeated conversations over the years concerning Dan’s diagnosis, Lois’ presence highlights how the disease has progressed and how their relationship has taken on new caregiving dynamics. 

What you will hear is an authentic depiction of living with Alzheimer’s disease, along with insights on how a partner begins to care for that person’s changing mind. 

Resources available on the episode webpage linked below 

Special thanks to Daniel Gibbs, MD, PhD, and Lois Seed for being a part of this episode.  

The Age of Aging is a Penn Memory Center production hosted by Editorial Director Terrence Casey and Producer Jake Johnson, in partnership with the Penn FTD Center, the Penn Institute on Aging, and Penn’s Alzheimer’s Disease Research Center. Contributors include Nicolette Calcavecchia, Dalia Elsaid, Jason Karlawish, Emily Largent, and Meaghan Sharpe. 

The Age of Aging is made possible by generous support from the Michael Naidoff Communications Hub fund and our sponsor, the TIAA Institute. The TIAA Institute is a think tank committed to building knowledge that advances lifelong financial security and well-being while considering the intersections of health and wealth. Their cutting-edge research provides actionable financial and longevity insights that help individuals and employers navigate the complex journey of aging. 

View Full Transcript

Episode Transcript

[00:00:02] Speaker A: What is it like to be Dan? [00:00:05] Speaker B: I don't know how to answer that. [00:00:08] Speaker A: What's it like to be you? When you think about that. [00:00:13] Speaker C: I envision you as. As being kind of shrouded in a fog. [00:00:18] Speaker B: Yeah. [00:00:19] Speaker C: Do you feel like you're in a fog? [00:00:20] Speaker B: Oh, that's very much the. [00:00:34] Speaker D: Welcome to the Age of Aging, a show about living well with an aging brain. Produced in the Michael Nadoff Communications Hub at the Penn Memory Center. I'm Terence Casey. Today's episode is a special one. It's an intimate conversation between our executive producer, Dr. Jason Karlewish, an Alzheimer's physician and co director of the Penn Memory center, and Dr. Dan Gibbs, a retired neurologist living with biomarker confirmed Alzheimer's disease. You may know Dan from his books A Tattoo on My Brain and Dispatches from the Land of Alzheimer's or from the documentary film that followed his journey. But what makes this conversation especially meaningful is the presence of Dan's wife, Lois. This wasn't originally planned to be a joint interview, but it quickly became clear that Lois's voice, her insights, her humor, her caregiving is essential to understanding Dan's story. You'll hear about the daily rhythms of their life in Portland, Oregon. Dog walks with Jack, time with grandchildren, and the quiet challenges of memory loss. You'll also hear how Lois supports Dan not just physically, but cognitively and emotionally as he continues to live a full life with Alzheimer's disease. And yes, dogs come up again. If you caught our last episode on the role of dogs in dementia care, you'll appreciate how Jack, their dog, is more than a companion. He's part of the care team. You'll also notice that Dr. Karlowish refers to Dr. Gibbs simply as Dan throughout the interview. This is a peer to peer conversation between two physician authors, one of whom living with Alzheimer's, about what it means to be a person. The use of first names reflects the intimacy and mutual respect of their dialogue, and we'll maintain that through the episode. Stay with us after the interview where my co host, Jake Johnson and I will continue the conversation with Dr. Karlowish about what it means to live and care for someone with Alzheimer's. But first, a word from our sponsor. [00:02:34] Speaker C: Understanding longevity can better prepare individuals to make thoughtful decisions not only about their finances, but about their health and lifestyle, too. Matching lifespan with healthspan and pairing both with financial readiness has become a defining challenge. The TIAA Institute wants to help build longevity literacy to better support outcomes for all. [00:03:02] Speaker A: Greetings, Dan. Greetings, Lois. Good to see you guys, I want to first begin with a thanks. We're going to have a conversation about what it's like to be living with Alzheimer's disease. I know, Dan, we've had that conversation before. But I really want to emphasize my thanks to you for your willingness and candor to speak and speak publicly. Lois, we've not met before. I'm a physician at the University of Pennsylvania. I'm a writer, and like Dan, I'm a neurologist, and I work at the Penn Memory Center. And in addition, I do a lot of work in writing and largely for the public about issues in neurosciences, with. [00:03:36] Speaker E: A particular emphasis on. [00:03:38] Speaker A: On Alzheimer's disease and related diseases that cause dementia. So that's a bit about who I am. Are you both comfortable with proceeding with this conversation? Yeah. [00:03:46] Speaker B: Yeah. [00:03:48] Speaker A: So Dan Gibbs is a neurologist and a writer and a person living with biomarker confirmed Alzheimer's disease. Biomarker confirmed, meaning he has learned the results of both amyloid and tau proteins through PET scans. And that very fact is a good example of Dan's unique position in the field to speak about what it's like to have Alzheimer's because he is a neurologist and a writer. And so with the knowledge and expertise of medicine, he's been able to clearly and coherently explain his diagnosis and the tests, et cetera, that led to that and the value of those very new and innovative tests. He's the author of A Tattoo on My Brain, A Neurologist, Personal Battle Against Alzheimer's, as well as a second book, Dispatches from the Land of Alzheimer's, which assembles several of his very thoughtful columns that he's written in a blog that he maintained for a number of years. The title of the book refers to his edema and swelling caused by receiving actucanumab therapy as part of one of the clinical trials. And he recounts that in the book as well. Dan's story begins with initial problems with anosmia, his loss of the ability to smell. And in 2012 or thereabouts, in an effort to figure out the cause. Being someone who valued knowledge and knowing what he knows of medicine, he sought genetic testing for the genes associated with Parkinson's. That test panel included also an APOE gene test result. And by almost accident, he sort of browsing, he unwindowed that and would learn that he was a carrier of the APOE4 gene, a homozygote, two copies of that gene. And in a prior interview, Dan, I remember you were telling me that you descended the stairs of your home in Portland encountered Lois and announced very plainly, I'm screwed. Ultimately, over time, some subtle but noticeable problems with memory would develop, leading him to see a colleague at his home institution in Portland for a private consultation. And later, he would go and seek out a more definitive diagnostic workup with neurologists at the University of California, San Francisco, some 500 miles south of his hometown in Portland. And I recall you explaining that one reason for that very distant workup was, as you said to me, I wasn't ready to come out of the closet. But in time, you did, and the result is, the world's a better place. Dan started writing about what it is like to be a person living with Alzheimer's disease again. Biomarker defined Alzheimer's disease, first in an essay in JAMA Neurology and then in his book Tattoo on My Brain. As a neurologist who once diagnosed and cared for persons with dementia and a person with Alzheimer's disease, Dan brings a unique and important assembly of perspectives. They were quite instructive to medicine, and I say that personally as a physician as well as, I think, to American culture. He shows, for example, how the value of knowing a diagnosis biomarker knowledge can be very valuable and empowering. So this is a pleasure to once again meet Dan. I interviewed him several times. Last was in 2023 as part of my class that I offer through the master's program in public health at University of Pennsylvania called the Alzheimer's crisis. And this is sort of a follow up some two years later where we meet again. And joining me as well with Dan is his wife, Lois. So greetings, Dan. [00:07:02] Speaker B: Hello. [00:07:04] Speaker A: And greetings, Lois. [00:07:05] Speaker C: Thank you. [00:07:06] Speaker A: Pleasure to have you. So where do I find you two? [00:07:09] Speaker C: You find us sitting in our kitchen at home in Portland, Oregon, at the. [00:07:14] Speaker A: Kitchen table, which is the classic gathering space for all Americans. [00:07:18] Speaker C: Yeah, it's kind of the center of everything around here, isn't it? [00:07:22] Speaker E: Yeah. [00:07:22] Speaker A: Yeah. So you're in your home in Portland, and who else is at home with you all? [00:07:27] Speaker C: Our dog. He's right down here by my side, and we're hoping he will stay calm during this conversation. [00:07:33] Speaker A: That would be Jack. [00:07:34] Speaker C: That would be Jack. [00:07:35] Speaker A: And Jack. We'll talk more about Jack because Jack does feature in tattoo, and there's no question, I think. And maybe we'll spoil it, but that Jack is part of the care team. [00:07:45] Speaker C: Yeah. Oh, for sure. [00:07:46] Speaker B: Yeah, yeah. [00:07:47] Speaker C: Erstwhile walking companion. [00:07:50] Speaker A: Yeah. And a sense of smell for. For Dan, as Dan has recounted very vividly, the loss of that Lois, you know, We've never met. So you're, you are Dan's spouse. How long have you been together? [00:08:03] Speaker C: 50. Well, let's see, we met in college, so that was in about 1970, I think fall was 70, so it's been a long time. We married in 73, so at least half a century. Yeah, more than half a century. [00:08:22] Speaker A: So we'll definitely pick up more. I want to hear more, Dan. But Dan let me pick up where we left off. So, you know, you're. You're at home here and you're in Portland, Oregon. What's filling your days? What's keeping you busy? [00:08:34] Speaker B: Well, a lot of dog walks. So as. As Jake as has jacked has gotten older, he want shorter but frequent dog walks. And so we're doing that most of the day. He comes over and tells me that it's time for another walk and I try to get some book reading in between those calls. On my, my walking. I've forgotten where we're going here. [00:09:05] Speaker C: What's keeping you busy? [00:09:06] Speaker B: Okay. [00:09:07] Speaker A: Yeah. So walks with Jack, you were mentioning you do some reading. What, what are you enjoying reading books or essays or what, what kind of read? [00:09:15] Speaker B: Reading books. And you know, my. I'm married to a retired librarian, so I have a constant number of suggestions on, on what to read. And that's great. We're, we're big users of the Molova County Library here in Portland. But one of the things I do with my reading is to keep track of it. On Goodreads. On Goodreads. That keeps track of how many books I've read over the years. This last year I normally would read 120. [00:09:49] Speaker A: Good heavens. [00:09:50] Speaker B: Well, 300 and something. [00:09:52] Speaker E: Well, well. [00:09:53] Speaker C: But that's pretty much what he does. That's. [00:09:56] Speaker D: Yeah. [00:09:57] Speaker B: But I've really dropped off though, this last year. I'm down to 60 or so. [00:10:02] Speaker C: But is that because you're reading more slowly? [00:10:05] Speaker B: Yeah, I'm reading more slowly. [00:10:06] Speaker C: You're not spending less time reading? [00:10:08] Speaker B: No, no. [00:10:10] Speaker A: Yeah. [00:10:10] Speaker C: We also have a lot of time with our grandchildren. We have four grandchildren here in Portland and one down in Corvallis. The ones in Portland are all school age and we do some. A few days per week after school pickup and, you know, caring for them and, you know, weekend activities. There's always a lot going on with grandchildren, so. [00:10:31] Speaker E: Yeah. [00:10:32] Speaker A: And do you get together with friends, Dan? [00:10:34] Speaker B: Not much. [00:10:36] Speaker C: Not too much. Yeah. [00:10:38] Speaker B: Yeah. And that, that's, you know, that's a personal thing, but I think I've never been a, you know, a war but fuzzy person when it comes to friends. [00:10:47] Speaker C: I actually Dan has a lot of social interaction on his dog walks. Will often come home telling me he's had a conversation with a neighbor, sometimes even with someone he doesn't know. But it's, it is a kind of social engagement. [00:11:00] Speaker A: Dogs, we found, are interesting bridges to connect people. [00:11:03] Speaker E: Yeah, yeah. [00:11:04] Speaker A: They're topic to enter into conversation. Unfortunately, they don't participate. So you're. [00:11:09] Speaker C: Well, sometimes they do with the other dog. [00:11:14] Speaker B: That raises another point there already. Or a related thing is that I'm very open with my diagnosis and so when I'm out taking a walk, you know, I'm, I'm often talking to people about Alzheimer's disease. [00:11:26] Speaker A: And what are some of the things that you talk about? What are some of the things that you talk. [00:11:29] Speaker B: Well, people have watched the film. I don't know if you mentioned that there's a book. [00:11:32] Speaker C: Yeah. But surprisingly people, some people have seen the film that we didn't even know why they would be watching it. [00:11:40] Speaker B: So there's that. And, and a lot of people have read the book. [00:11:43] Speaker A: And what are some of the things people ask about or talk with you about? [00:11:46] Speaker B: Well, it depends. The. I, I, I've, I've heard from a number of physicians who have Alzheimer's disease, and so that's been important to both of us. But, but yesterday I talked for the first time with a hand surgeon from Syracuse who, you know, wanted to touch bases. [00:12:06] Speaker C: Well, that was a phone call. [00:12:07] Speaker B: That was a phone call, not a dog walk. [00:12:10] Speaker A: And what sort of things did the hand surgeon bring up? Or is he. Was the hand surgeon someone living with Alzheimer's as well? [00:12:17] Speaker B: Yes, yes. A few years older, but he was, he was quite, for him, my book was, was kind of a life changing thing because even though he was a physician, he really hadn't absorbed all of the risk factors and diet and, and he just wanted me to know that it had really been important to him. [00:12:39] Speaker A: To read your book. [00:12:40] Speaker B: Yeah. [00:12:41] Speaker A: Continuing on this topic of conversations with, dare I say, strangers or acquaintances about Alzheimer's, anything more that stands out in terms of what people say to you or ask you or want to know about? [00:12:54] Speaker B: Well, you know, one thing I've, I've noticed almost without fail is that I can remember their dog's name, but I have no idea what their name is. So it's interesting. There must be a separate part of the brain for handling pet names in. [00:13:11] Speaker C: Terms of what people are interested in talking about. [00:13:13] Speaker B: Yeah. [00:13:14] Speaker C: You don't have any common. There's no common. No, for me, people Say to me, how is Dan doing? And that's an. I don't know what people want to hear. It's impossible to say, oh, he's just fine, because, you know, he's not just fine. But also the changes are not so dramatic that, that there's ever going to be like, you know, it's just, you know, become terrible all of a sudden. It's just little things and sometimes it's even hard to remember the little things. So I pretty much just have to say, we're hanging in there. It's slow, but we're not at a point yet where we can't manage it. [00:13:57] Speaker A: I see. Well, let me try that question out. Dan. How is Dan doing? [00:14:03] Speaker B: Well, I think I'm doing remarkably well for having had Alzheimer's for so long. I have a noticeable increase in my short term memory, verbal memory in particular. And so that's making it harder for me to have talks like this because I lose my train of thought. You know, I always take Lois with me when I'm giving a public talk and I'll turn to her and, and say, what am I saying? [00:14:28] Speaker C: Some. Sometimes I don't know if he's lost a word. I'm not sure sometimes what the word is. Often I do know the word. But just keeping him on track. I think I. A little bit helpful with that. [00:14:39] Speaker A: Yeah. [00:14:41] Speaker C: What was the question? How are you doing? [00:14:43] Speaker B: Yeah, right. [00:14:43] Speaker D: Yeah. [00:14:44] Speaker C: He's having a little more trouble finding words and he's having a little more trouble remembering people's names and sometimes having trouble just, just remembering who people are. [00:14:56] Speaker A: I see. [00:14:57] Speaker B: And, and I, I'm. I'm having more trouble just in a simple conversation. I mean, I almost would be the first one to tell you that, that she'll tell, she'll ask me something and I might only get one word of it. And so I have to say what. Yeah, that's really annoying for her. [00:15:15] Speaker C: Well, yeah, it, it's pretty hard. Yeah. Yeah, it's a processing issue. His brain just doesn't process quickly enough to catch the start. Usually the start of a conversation, if you're initiating a new conversation, he has a lot of trouble, especially if he's. It's unexpected. I, he thinks it's a hearing thing. I, I think it's mostly a processing. [00:15:37] Speaker A: Yeah. [00:15:38] Speaker B: I've noticed something interesting in the last couple of days when I was reading and I read a word that I said. They've misspelled that in the book and I can't remember what it was now, but I went and looked at it over and over again. And I said, oh, though that's the way it is. And so I, I, it's not just verbal, it's, it's written. Words are not connecting with the part of my brain that needs to understand. [00:16:04] Speaker C: Do you think that's what's slowing down your reading? [00:16:06] Speaker B: I think so. Just word, probably. [00:16:09] Speaker D: Yeah. [00:16:10] Speaker C: Well, Dan doesn't have a lot of other hobbies that he pursues. He plays the piano a little bit, not a lot. And I largely that's he doesn't think of it. Reading is kind of his default thing. If he's not dog walking. You enjoy still a little bit of yard work. [00:16:27] Speaker B: Yeah, yeah. [00:16:28] Speaker A: And then it sounds like time with people, both the conversations when you're walking the dog, as well as time with Lois as well as time with your grandchildren. [00:16:36] Speaker B: Yeah. [00:16:37] Speaker C: You know what, he, he struggles in a large group because he has a hard time separating out if there are multiple conversations going on. He just really becomes quite a quiet, more observer than a participant. So even a family gathering we're up to now about, I think full fledged, about 17 people for a holiday dinner, that's too many. It's too hard. [00:17:01] Speaker A: Do you find that a little overwhelming, Dan? [00:17:03] Speaker B: Yeah, yeah, I just, I just, you know, tune out. I'm not rude, but, you know, how's. [00:17:08] Speaker A: Your mood, your spirits? [00:17:10] Speaker B: No, it's really not that bad. I mean, I do take citalopram, but I can't say that I'm depressed. [00:17:16] Speaker C: He's, he's doing great with that. I think Dan made it a decision at the beginning of this whole process that he was going to stay positive and not be kind of an emotional burden on the rest of the family. But he was not going to sink into depression or any of that kind of stuff. And I think he's pretty positive most of the time. [00:17:38] Speaker A: I see. It's very interesting observation when I inquire my patients, Several have a similar position, which is they can recount quite vividly what they're experiencing. Troubles finding words, troubles concentrating, et cetera, as you've described. And will also say, and I'm enjoying life. You know, I don't like having this disease, but, but I'm living with it. And that's what I'm sensing here is what you're describing. Is that a fair statement? [00:18:04] Speaker B: Yeah, absolutely. And, you know, I can still walk and you know, my motor skills are still there. [00:18:09] Speaker A: Wouldn't maybe ask a, a question that sort of furthers that topic, which is a very straightforward question to you, Dan, which is what is it like to be Dan? [00:18:20] Speaker B: I don't know how to answer that. [00:18:23] Speaker A: What's it like to be you? When you think about that. [00:18:29] Speaker C: I envision you as. As being kind of shrouded in a fog. [00:18:33] Speaker B: Yeah. [00:18:34] Speaker C: Do you feel like you're in a fog? [00:18:35] Speaker B: Oh, that's very much the case. You know, one thing that. That I think drives Lois a little bit mad is the. The fact that I. I talk to myself and, and that's. I come. I come down, know Jack, and I get up pretty early. Jack gets up, then I get up, and so I'm making breakfast. But I have to say out loud what it is the next step is in what I'm doing. And that. That helps me organize what my immediate plans are, because I'm probably at my most befuddled first thing in the morning. That's not really true. It's. [00:19:09] Speaker D: It's. [00:19:10] Speaker B: It's one of the more befuddled times of day. [00:19:13] Speaker A: You mentioned that when we last met in 2023, mornings were the worst. I remember you telling me that. And exercise on the course of the day starts in your brain. Yeah. Lois, you observed, and Dan agreed that, you know, being Dan can sometimes is an experience of sort of living in a fog. I wanted to pick up on that and kind of pivot a bit to you because it, you know, when I last met Dan, he was on his own. Like, every time I met Dan, he was on his own. Interviews we've held and conversations. And now here you are. You mentioned a bit already, for example, that you're accompanying him on his talks in order to kind of act as almost a cognitive prosthesis during the talks. So, you know, tell me a bit more about sort of how you're involved in his having Alzheimer's disease. [00:20:02] Speaker C: Yeah, I'd say I'm very involved. I've started to say he's in assisted living and I'm the assistant. I think if he didn't have a spouse, he probably would need more professional help. Well, when he started this whole basically second career of Alzheimer's awareness and early diagnosis advocacy, he would take himself off to these gatherings mostly in person, pre Covid. Now he doesn't drive very much, so if we have to go someplace, I'm the driver. And with that, I used to sit in the back road just to be, you know, to be there, but now I sit in front row because he often will turn to me. And when he's searching for a word or an idea or when he loses his place, just in terms of. Of just our daily Life. I. I have taken over almost all of the management responsibilities. You still do the cars? I haven't. I haven't taken on the cars yet. So there are people. [00:21:03] Speaker A: What does that mean, the cars? [00:21:05] Speaker B: Well, we have two electric cars that need almost no maintenance. [00:21:07] Speaker C: Oh, no. They need, like, updates that you do on your phone or your watch or something, and I don't know that stuff. So, you know, there's always in the back of my mind a list of things that I still need to learn how to do, and I know I'm going to have to eventually, probably sooner than later, but, you know, the. The things that he can still do independently. Yeah, I really welcome that. I think it's good for him and. And for me in the house. [00:21:35] Speaker E: Typical day. [00:21:36] Speaker A: What. What are some of those things? [00:21:38] Speaker C: Well, he does almost all the dog care in addition to walking. He does all the feeding, and. But the one thing he can't do is he doesn't hear very well when our dog is asking for something, you know, crying at the back door or whatever. And I either have to do it myself or I have to tell him that he needs to pay attention. [00:21:58] Speaker A: The cooking. I think he assists. I remember he was telling me, you guys cook together? [00:22:02] Speaker C: No cooking? No. No cooking. Maybe at one time we might have done a little bit. But no, he doesn't do any of the cooking or meal planning. [00:22:11] Speaker B: Well, I take care of my. My daily sandwich. [00:22:14] Speaker C: Oh, right. Okay. [00:22:16] Speaker A: He. [00:22:16] Speaker C: He independently fixes breakfast and his lunch, but those are very uncomplicated chores. [00:22:22] Speaker B: So. [00:22:22] Speaker A: Tell. [00:22:22] Speaker B: Tell what? [00:22:23] Speaker A: The. [00:22:23] Speaker B: The. The. My breakfast. [00:22:26] Speaker C: And. And why is that of interest? [00:22:29] Speaker B: Well, the. The breakfast is homemade granola. Granola for breakfast with various adds on. And then the lunch that I fix, it takes me 45 minutes to make it. So it. [00:22:44] Speaker C: And it takes the whole kitchen. [00:22:47] Speaker A: Is this lunch? [00:22:48] Speaker B: It is tuna and garbanzo sandwich with a lot of other stuff sliced into. It's really good. It's, you know, right out of the Mediterranean diet, so. [00:22:57] Speaker A: Yeah. Why am I not surprised that someone in Portland has granola for breakfast in the morning? Sorry. [00:23:04] Speaker C: Crunchy. We're pretty crunchy. [00:23:06] Speaker A: Sorry. You set. You set that up. But, Lois, it sounds like you're busy in a role. Would you describe yourself as a caregiver? [00:23:13] Speaker C: As a caregiver, yeah, I would. You know, when we started speaking and talking, Madonna wrote the book, and then we had the film made, I didn't consider myself a caregiver. We were just living our retired lives. But, yes, now. Now I would. I would. [00:23:30] Speaker A: What. What are some things that Made you make that kind of mental pivot from not to being a caregiver. [00:23:36] Speaker C: Well, some of it was driving, and some of it was just as gradually. Dan can't multitask really at all. And there are many situations that come up during the course of the day, particularly on days when we have grandchildren here in the afternoons. It's complicated because we have a needy dog and needy grandchildren, two of them at a time, who are going in directions. And Dan, I slowly have realized he can't really do anything. He can't help at all with that. So that's kind of an extreme caregiver situation. I don't as yet manage his medications. I know other. I have friends whose husbands have Alzheimer's and. Or other ailments, and they manage all their husband's prescriptions and organize the medications, but I don't do that yet. So that. Another. Another big step when he can't manage those. Let's see, what else. [00:24:41] Speaker A: The finances in the house. [00:24:43] Speaker C: Yeah. [00:24:43] Speaker A: Yeah. I remember, actually when I met Dan, first time I met, he had to pay the. The Portland Arts tax. It's a tax. And I remember you described how he set it up or you took care of the arts tax. And the question was, going forward, would it be your job to pay his arts tax or not? And I'm just curious, are you. Are you managing the arts tax? [00:25:09] Speaker C: Yeah, managing all the taxes. [00:25:12] Speaker A: Okay. [00:25:12] Speaker C: Yeah, for sure. [00:25:14] Speaker A: Okay. And what's it like being Lois in the role you're in? [00:25:19] Speaker C: Oh, wow. You know, I don't really think of myself very much because I've got so many other people and this dog to take care of. Well, in some ways, it's absolutely fine, though. Our. Our world has gotten pretty small. We don't go out much. Our social life is pretty much confined to family. But, you know, you just kind of get used to what. What you have, what your life is. And I'm really. I have a lot more hobbies, things that I enjoy doing, really, than Dan does. So I'm never bored. I always have something. [00:25:55] Speaker A: What are you. What are those things you're doing? [00:25:56] Speaker C: Oh, I do a lot of needle craft stuff. I do. I do knitting and. And sewing, quilting. There's always stuff the grandchildren want. And I spent a lot of time out in the garden, so my yard and my house are really points of pride for me. I enjoy working on them and keeping them looking good. [00:26:18] Speaker A: I see some couples who are like you, living with Alzheimer's, and as patient and caregiver tell me that friends sort of drift away. Has that been an experience? [00:26:29] Speaker C: Yes, but I don't think that's attributable to Alzheimer's. It's mostly attributable to all of us are getting older, people aren't able to get together anymore. You're a friend and some people passed away. I used to go to a dog training class once or twice a week and our trainer has gotten elderly and isn't mobile anymore. And so that's been reduced to a weekly zoom call with our dog training friends. [00:27:01] Speaker A: I'm hearing an interesting theme here of, of, you know, the, the threats of developing isolation or loneliness. I don't hear that. Because you've got the grandkids and the dog. [00:27:12] Speaker C: Yeah. Thank goodness for family. I mean, I think we don't have family. That's a whole different scenario. [00:27:18] Speaker A: Very interesting point that if you don't, you really need to get yourself in a living situation where other people are right there, as opposed to. Because of all the issues you raised are just mobility and illness and whatnot. Separate people, never mind what the illness might be. [00:27:33] Speaker C: That's a, you know, we hear from people, and in particular Dan's sister, who's five years older than he is, who's moved into a retirement community. And she's just over the moon, happy with the retirement community, all the new friends she's made and community that she's in. Yes, but we're kind of like, we don't really need new friends. That would be challenging for us to take on new friends. [00:27:59] Speaker A: When you put it back to, you know, your reflections as a neurologist on, on dementia, what it's like to have it, the care that people need. Again, it's this unique insider, outsider perspective that you bring, you know, both a physician, a neurologist who diagnosed patients with it, treated them, and now, of course, as a patient, I want to pick up on a couple points that we had talked about in the past and just see, sort of update any thoughts or reflections that you might have on them. And I guess first what I'll do is just open it up to you. Now, you know, I know you're retired, but, you know, as a physician, I mean, you know, in some sense, once a physician always wants a physician. Given how it's so much part of your being as you reflect now on what you've experienced, what are your reflections as a physician about what it's like to have Alzheimer's disease? [00:28:47] Speaker B: Well, let me, let me approach it from the point of view of my blog. But that was, I think, a very. It was A very well received thing I get even now I, I still get, you know, hundreds of, of. Of hit. Whatever, whatever you call them. [00:29:03] Speaker C: Comments. Comments on your blog. [00:29:05] Speaker B: Yeah, you know, I, I sort of signed off back in June saying I would shut it down, but people are still going, you know, looking at it. The, the book the Tattoo on My Brain has been published in Polish like a year ago and just recently Korean translation came out and my, my inbox on comments on the blog has soared. I mean I've been getting, you know, tons of these disinterest and actually in a few weeks the producer of, of the Korean television station is, is bringing a team to meet us and do a story for their. I see their news. I'm lost on where we're going between. [00:29:55] Speaker C: Physician and patient and. [00:29:56] Speaker B: Yeah, yeah, of course that's changed. You know, when I was first in practice in 89, I came out of residency. The approach to treating dementia was denial. I don't know if you're, you're probably too young to have been in that. [00:30:11] Speaker A: I was at, I, I witnessed the residual of it in my training. Trust me. Yeah, it was okay. What's the point of diagnosis? It doesn't matter. [00:30:18] Speaker B: And don't worry, you probably don't have it. You know, that changed when the medications started coming out. Aricept, for example, you have to make a diagnosis. But it's, it's kind of, I mean, but now it's just the opposite is true. I mean, I think that, that we need to encourage people who are at risk to determine what, what their risk is and what they might want to do about it in advance of, of developing cognitive problems. [00:30:44] Speaker A: What would you say to people who experience, who are experiencing cognitive problems? Who will say to me, what's the point of getting it figured out? What's the point of getting a diagnosis? What would you say to that? [00:30:55] Speaker B: Well, I would, I would say that I think it's going to become increasingly apparent that changes in the brain occur. We know this, the changes in the brain, the neuropathology starts 20 years before there are symptoms or signs. And my belief is that we will find that the most treatable part of the journey is in the, in the very earliest stages. And, and I know that's there are lots of problems and lots of controversy with that. But, but what I tell people practically who are asking me now, you know, what should I do? You know, I've got Alzheimer's in the family. So I ask, well, how, how close are they? Do you have a mother, father, brother and sister? And if they say yes, they said, I tell them that you, you are at increased risk, and I would recommend that you take steps to reduce your risk. And we go into the talk about the Mediterranean diet, exercise and whatnot. [00:32:02] Speaker A: In your book and in conversations as well, you reiterated this point that you used to be of the belief and colleagues would talk to you and say that advanced stage patients with dementia don't suffer. And in my class, your response to that was, and I'm quoting you, you think that that's bullshit, that advanced stage patients do suffer. Set aside the word. Do you have any reflections on the nature of suffering, particularly in advanced stages? [00:32:34] Speaker B: Well, I can see the frustration in the faces of people with advanced. You know, they can't understand, they can't get words out, and they're not happy. And I'm sure there are happy patients with end stage Alzheimer's disease, probably heavily medicated. Well, maybe. So my view is that I am doing everything I can to increase my chance of prolonging, of slowing the progression of my Alzheimer's, such that I die of something else. [00:33:11] Speaker E: I see. [00:33:11] Speaker B: I'll get to the end stages. [00:33:13] Speaker C: This is always a difficult part of his conversation. You know, something Dan's primary care doctor said to him once when I accompanied him to an appointment really stuck with me. And she said, there's a lifespan and there's a health span. I think you can apply that maybe to Alzheimer's, too. With a health span, is what you're trying to, to achieve is, you know, a quality of life. [00:33:39] Speaker A: Would you say that's a healthy mind, a quality of your mind that's keeping that healthy? [00:33:45] Speaker C: Yeah, but I mean, that, that can be done even when quite a bit of assistance is needed. [00:33:51] Speaker A: Right? [00:33:52] Speaker C: I, I don't know. You know, we're not experts on, really, on the mid to late stages of Alzheimer's, because we're not there yet. [00:34:00] Speaker A: I'm seeing support being given and therefore a life well lived. I mean, that's what you've described, Dan. I, I, I did want to follow up. I remember apropos the issue of, you know, trying to extend the way you are as long as you can and then hopefully dying of something else. And I remember you mentioned when we met in 2023 that you had developed Raynaud's phenomena, and you looked up that that sometimes is a paraneoplastic phenomena, paraneoplastic being a medical term for a symptom of a cancer that is not primarily from the cancer. And, and that you had decided not to, to pursue any kind of Workup for a cancer. And I think that's fitting with this idea that you have of, well, go ahead. Is that still a view you hold? [00:34:46] Speaker B: It is, yeah. [00:34:47] Speaker A: But then I challenged you because you were telling me that, and maybe you've changed, but are you still taking the statin drug? Yeah. [00:34:55] Speaker B: Oh, but I'm sure I told, I, I, I, I don't have any problem arguing this with you, that the, the statins are important because it's, it's the, what's bad for the heart is bad for the brain. [00:35:09] Speaker D: Right. [00:35:11] Speaker B: And so I'm, I'm treating my cardiovascular stuff. I mean, I, I guess I could stop them and, and that would probably change things pretty quickly because I take two blood pressure medications and lipid medications at maximum doses. Okay. Sound lost? [00:35:30] Speaker C: Well, about prolonging your life. [00:35:33] Speaker B: Oh. [00:35:35] Speaker C: Yeah, that's kind of. Maybe there's a little inconsistency. [00:35:40] Speaker B: Yeah, maybe. [00:35:41] Speaker C: So we have to admit he has some inconsistency with that because he still goes to the dermatologist to get skin issues looked at, and. Yeah, he just doesn't do the stuff he doesn't want to do. I, I guess maybe that's it. You kind of liberated yourself from doing the unpleasant preventative care. [00:36:00] Speaker A: Well, it is, it's a difficult subject, and I, I, I applaud your honesty. And, and, you know, I don't criticize the inconsistency because I think one of the struggles that America will face is with the treatments that we have that slow the disease. How long should someone be on treatment versus saying, you know, I don't want treatment anymore? In some diseases, particularly physical illnesses, I don't want to say it's straightforward, but there's a more kind of, well, you know, when it's at its end stage is when I'll stop. And what is that? Well, you know, less than six months of life or intractable pain or any number of things which most reasonable people say. I, I see what you're saying, and I, but I personally, I'll speak as a physician. I'm struggling with what is the end stage of this disease. [00:36:49] Speaker C: Yeah, I think it could vary from person. So we don't really know till we get there. Right? [00:36:53] Speaker B: Yeah, yeah. [00:36:55] Speaker A: That's kind of how I feel too. It's like a journey where without, without a map. [00:37:00] Speaker C: Yeah, yeah, yeah. [00:37:02] Speaker A: But you're doing a good job on it so far. [00:37:06] Speaker C: All we can do is, you know, take care of what's in front of us. [00:37:10] Speaker A: In the book, Dan says, lois and I made a pact to live Each day, one day at a time. [00:37:15] Speaker C: Yeah, pretty much. I. Well, yeah, kind of. I'm a planner. [00:37:20] Speaker A: You're the planner. [00:37:23] Speaker C: So I can't really bring myself to absolutely just live for one day at a time. I do kind of like to know what's happening. I mean, if we knew what was happening, I guess we could plan better. We're starting to get a little bit of pressure about possibly simplifying our living situation, but we're not ready to give up our home. Yeah, I'm not ready. Dan will be ready before I am. So that's a whole other thing. When he needs more professional care. [00:37:55] Speaker A: Yeah. Creating that space called home, which for many, it's. Well, it's where we had been for 50 years. And yet home can be created in other spaces. But it's a real challenge. [00:38:04] Speaker C: Yeah. [00:38:05] Speaker E: Yeah. [00:38:07] Speaker A: You have been generous with your time, generous with your candor. Again, I want to just thank you. I cannot tell you enough. I know it may seem like, oh, well, it's easy to talk about this and whatever, but I can't tell you how many people tell me it took us years to come in and see you at the memory center because we just didn't want to deal with this. And I'm glad they do. And those who, after they do try to keep it hidden, quiet, don't want to talk about it, et cetera. And I really applaud your candor because telling these your story, as candidly as the two of you had. And it is the you here is a plural you. And Lois, I want to thank you. Is really very valuable for people to understand what is it like to have Alzheimer's as a patient and as a caregiver. [00:38:50] Speaker C: Yeah. [00:38:51] Speaker A: Give you guys the last word. [00:38:53] Speaker B: I would give you one more anecdote. So about a year ago, I was invited, or we were invited to do a screening of the film at the local Alzheimer's association meeting. So there were 500 people there, and the screening was fine and good questions, I guess. And so after the talk, it was a lunch. During the lunch and after the talk, I went to the restroom, and there were about six or seven people in there. And they all started talking to me about Alzheimer's disease. And I'm just saying, probably the first and last time in my life that I've been standing at a urinal and talking about outside of strangers. [00:39:40] Speaker A: That almost sounds like a TV episode kind of. No. [00:39:46] Speaker C: Bad. [00:39:47] Speaker A: Lois, let me give you a last word, please. [00:39:50] Speaker C: Well, the thing that I think about the most is in terms of support, people Always ask me that, am I doing something for myself, you know, support. And. And I just have found that my best support is talking with friends or even acquaintances who are in a similar situation as I am caring for a spouse with a certain level of dementia. I find that I can say things to them, to people in my situation, that I wouldn't even say to my adult children, because any. Almost anything I say about our situation ends up sounding like complaining. And I never want to feel like I'm complaining to my kids because I don't want to put that extra burden on them because, of course, they're very concerned. And so I have to be very careful. But with a friend, I can just say anything. And there's some sense of humor in some of this, too. I texted a friend whose husband has Alzheimer's one Sunday afternoon and said, dan's just starting a big plumbing project. What could go wrong? And she texted me back and said, everything will go wrong. Start filling jugs of water. You just have a little camaraderie. And to me, that's pretty fulfilling what I need at this point. [00:41:17] Speaker A: Thank you. One of the things I've taken away from this conversation is a very vivid portrayal of. Of how what a caregiver is is fundamentally supporting the mind of the other person so that they can be them. It's not just a bunch of tasks. It really is this very judicious reading of the other person and then filling in just as much, but not too much based on what you read. And I think you vividly described that, and I want to thank you for sharing that. Welcome. [00:41:57] Speaker E: All right, welcome back. [00:41:59] Speaker D: I'm Terence Casey. I'm here with my co host Jake Johnson and Dr. Jason Karlewish. Good to see you both. [00:42:05] Speaker B: Good to see you. [00:42:06] Speaker E: Yeah, great to see you, Terry. Great to see you, Jake. [00:42:10] Speaker D: And thank you, Dr. Carlos, for that. That moving conversation, that whole interview. There so many elements that we could choose to focus on the role of caregiving, the power of transparency among patients, the importance of plumbing there at the end. But I'd like to start with a question that I've heard you ask at least dozens of times, both in the clinical space and in the research space. And that was, what is it like to be. And in this case, what is it like to be Dan Gibbs? And over the years, I've heard a lot of different answers to that question, but I think this is the first time I've actually heard the caregiver intervene in the answer of the question appropriately. So after Dan had a chance to try to answer on his own. But it sure seemed like a theme throughout the interview that we thought would be originally a one on one dialogue. What struck you about that? How Lois stepped into this role as a caregiver and co interviewer. [00:43:04] Speaker E: This was an intense interview. I realized I sounded at ease, and in some sense I was at ease. But you have to understand the historical context. I mean, I'd spoken with Daniel two times prior. The last time was in 2023. And each time it was Dan alone, Dan being Dan. And this time it was Dan and Lois to be Dan. And that really kind of came out there because it was very clear just from the beginning of the interview when Lois said Goodreads, namely, Dan was talking about his reading habit and how. And he couldn't get the word for Goodreads. And she stepped in and filled in the word. And that continued throughout. Namely her talking about how she's essentially not just a cognitive and in some sense a mental prosthetic for him. And I say mental, a word that oftentimes very charged, I think, but for the full meaning of it, namely that she's helping support his consciousness, his ability to experience the world, his ability to act with the agency as best as she can. And yeah, you saw that played out when I asked him that question, what is it like to be Dan? Where she stepped in and helped support him to explain what it was like to be Dan. That question's a question about third person mind perception because it's totally cribbed from Thomas Nagel, the philosopher who wrote a seminal essay on the philosophy of consciousness called what is it like to be a Bat? And it's a question that when you ask it of something, you're essentially asking, does it have a mind? There is nothing like it. It is to be this pen or the computers that we're on, particularly the computers, because they don't have consciousness. But there is something like it. It used to be Dan and also to be Lois. And we saw that played out in this interview. [00:44:44] Speaker D: And if I could steal it for a moment, what is it like to be an. An Alzheimer's specialist and an author who is speaking to a neurologist and an author about his lived experience? [00:44:59] Speaker E: Yeah. You know, I'm humble enough to know that I could be in Dan's shoes someday. I mean, the odds of developing dementia, if you live long enough, about 42%. You know, I have my moments where I struggle to find a word. And sometimes I wonder. I don't know, you know. Anyway, what's my point? It Was really moving to see someone like me making sense of and coming to terms with this diagnosis. And he's doing probably what I will end up doing too, which is really trying to understand what's going on in his brain. There was a moment there, for example, where he talked about how he could learn the neighbor's dogs names, but not the neighbor's name, which by the way, is precisely what I do. And he then speculated maybe there's two parts of the brain. One part where you have the human names, another part for the dog names. Now, whether that's the case or not isn't the issue, but it's yet another example of his really determined effort. I want to know what's going on in my brain, which is why I emphasize, for example, the biomarker based diagnostics that he underwent. And he really talks about those and his performance on test scores and whatnot. So, you know, I think he's a good example of the future of this disease, which is, I want to figure out what's going on with me so that I can make sense of it and live with it. It's not pleasant. And Dan made it very clear this isn't pleasant, as did Lois. And yet. And yet, you know, they figured out how to live with it. It's truly an experience of pleasant pain, I think for both of them. [00:46:21] Speaker D: Yeah. [00:46:21] Speaker F: One of the ways that kind of dual perspective I thought played out in terms of Dan being, you know, a former physician and also having Alzheimer's disease, was talking about how he was going to delay care in certain aspects of his life so that hopefully he dies by some other means than. [00:46:42] Speaker E: Than his Alzheimer's disease. [00:46:43] Speaker F: Yeah, than Alzheimer's disease. Is that a consideration that comes up when you see patients? [00:46:49] Speaker D: And is that. [00:46:49] Speaker F: How do you advise people through that? [00:46:52] Speaker E: Yeah, this has been a topic that he and I have talked about several times and he sort of revealed and Lois almost called him out on, I want to say the contradictions, but the complexities, which was a theme I think throughout the interview in some sense. And you know, it was a surreal experience. And I mean that in a very descriptive, unjudgmental way. We can go back to that idea of surreal. But you know, Dan was on Aducanumab, which was developed by Biogen, briefly approved by FDA under a series of regulatory science decisions. This is now off the market, but is one of the anti amyloid therapies like Lecanemab and Donanemab. He can't take it anymore because he had a very severe hemorrhagic and edematous side effect. And yet he's doing everything he can to try to slow the pace of his Alzheimer's. And his focus is working on cardiovascular health, hence taking the statin. And I think if he could be on aducanumab, I have. I don't know that for certain, or lecanemab or Donanemab, I think he would be, because he was determined to slow this down. And yet, of course, by saying that eventually I wouldn't want to slow it down, hence I'm not screening for cancer, he's sort of occupying this position that there's this time before death entirety that I wouldn't want to be treated. And he's walking into a very ethically charged conversation with himself and with Lois about between now and the very end, will there come a time when we make a grand pivot on the kind of treatments that I'm receiving? And I think this is one of the emerging, incredibly important topic that we need to have a conversation about as a culture. And he brought it out there in spades. [00:48:30] Speaker D: I was struck on that part of the conversation when you called this sort of a disease without a clear end stage and a journey without a map. The way that the two of them described the future that's ahead of them gets to what you were just saying, where they weren't argumentative or even disagreeing really, but you could see the different perspectives that they had. He talked about taking this day by day. And Lois said, I'm a planner. If I knew what we had in store in the future, I would want to work towards that. And how do you help patients and their loved ones navigate that diversion in decision making and sort of the day to day versus long term, in some. [00:49:12] Speaker E: Sense, it's to recognize it. I think Dan shows an excellent recognition of the role that Lois is playing, including her own symptomatic experience. I mean, he is very aware of, I have Alzheimer's. Here are my symptoms. She is helping me be me. And she has a symptomatic experience. He talked about sometimes the annoyance in her face and how he worries that he's bothering her. And I guess what I'm getting at is, you know, I think they're a great example of arriving at this recognition of you in some sense, the lowest have Alzheimer's as a result of your role as a caregiver. And yet the experience is quite different than mine. And, you know, your experience is one of filling in as a kind of cognitive and mental prosthesis for me. And that's going to get harder and face challenges. And it's a different set of experiences than my experience, which is more kind of, once everything's done, I'm doing relatively okay in the moment. In the moment. And so what you saw played out here were two different experiences of what it's like to have Alzheimer's as patient and as caregiver, with a really, I think, elegant recognition on both person's part of those experiences. I think one thing that, that upends Terry is this idea of, like, it's best not to talk about it or like, you know, denial is a source of great comfort. Better not to be aware and know about it. And they completely just bulldoze over that folk psychology concept that ignorance is bliss when it comes to living with a brain disease. They're very aware of what's going on and what's going to happen. [00:50:54] Speaker D: Yeah. At the same time, I was struck that Dan is comfortable talking about his diagnosis at the urinals and the men's. [00:51:03] Speaker E: Bathroom or on dog walks. [00:51:05] Speaker D: But Lois talked about that she was not comfortable in her words, of complaining about the situation to her children. So it was interesting to see that the limits to their boundaries, they're open within the public. Or maybe Dan is more open with the public public, and Lois maybe. [00:51:24] Speaker E: Well, she's open. She's on the age of aging by thousands of listeners. [00:51:30] Speaker D: I suppose that it's, it's. It's not that they aren't open or that she isn't open, but the. Where they define the boundaries of. Of this transparency. [00:51:39] Speaker E: Yeah. It was a very poignant moment when she talked about how, you know, one of the most important things for her is the ability to speak in almost a confessional manner. And I use confession in the full sense of the word, like, I'm going to tell you some things which really bother. And, you know, we could bother other people if they heard them, but I need to tell you these things. And it's quite clear that her capacity to confess what she's feeling and experiencing the losses is of tremendous value to her. And it, you know, we talk about, oh, caregivers need support. And, you know, some caregivers will talk about, you know, I don't want to go to a support group, but she's essentially saying something that we've known for centuries as humans. There's a real value in uttering something and speaking it and saying it and having it witnessed by other people. And there's some healing that comes from that experience or resolution. [00:52:36] Speaker D: So I think there were a Lot of important lessons that both caregivers and patients could take away from Dan and Lois's experience, whether it be in the transparency of living with the disease or caring for someone with Alzheimer's disease, whether it gets to sort of positivity and the balance with realism or the importance of social networks. What stuck out to you as sort of a takeaway for either a person living with cognitive impairment caused by Alzheimer's disease or caring for someone who is. [00:53:10] Speaker E: Yeah, maybe I'll return to that point. I made Terry about the surreal. I know surreal often has a kind of creepy quality to it that I think if you ask people what words come to mind when you think of surreal, they probably first say Salvador Dali. What do we mean when we talk about surreal? That something is both real and not real at the same time. And, you know, surreal images, I think, are a good way to explain that. Like, if you look at a Dali painting, there are these obvious objects which you often recognize. Like, that's a clock, but it's bent, melting, or any number of other imagery. And I think that is the experience of having Lewy Body disease, Alzheimer's disease, TDB 43, or any of those diseases when they become symptomatic, things are both real and not real. And you really occupy these positions of just inherent contradiction. And I think once you accept that and come to terms with it, you can carry on and create some beauty. You can create some meaning out of it. [00:54:06] Speaker A: And I. [00:54:07] Speaker E: You certainly picked it up. There are multiple moments of contradiction throughout the interview, and I don't think there were contradictions because I didn't know what the quote they were talking about. They were saying, this is a surreal experience, and once you recognize something for what it is, it's the first step for coming to terms with it. And that was my one takeaway. I will say Terry and Jake. Again, I really want to emphasize it was touching. I didn't choke up, but I think I probably could if I thought enough about it to see Dan, over time, change. And again, just to emphasize how, you know, when I met him before, I always remember, actually, he would talk about Lois, but Lois was never in the picture. And quite literally now she was in the picture. And I will admit, my emotions when I saw that and saw them and talked to them, was some feeling of sadness and loss, but also some feelings of love, I guess, is the word that comes to mind. So I saw her. So a lot of love. Want Kim? [00:55:06] Speaker A: Yeah. [00:55:06] Speaker D: It was interesting that early on, when you asked about what is it like to be Dan Gibbs. It was with assistance from Lois that he had suggested. He's living in a fog right now. And yet a lot of what I took away from the remainder of the interview is sort of what do you look for in a fog, but the bright light or some element to help help guide the path forward. And there's so much of that in Lois and how she was supporting him through the interview. And I would assume in the day to day. [00:55:42] Speaker B: Yeah. [00:55:42] Speaker E: And their journey without a map. I routinely ask that question, what is it like to be whatever the person's sort of name is, you know, what is it like to be Jason? What's it like to be Terry? What's it like to be Jake? What's interesting, you know, in my clinical practice, I have the structured interview that leads up to that question. In some sense, I was doing a structured hear there, although it wasn't as structured. So I'll tell you, my experience generally has been both patients and caregivers readily answer that question. Patients sometimes might struggle because of the abstract quality. That's abstract, but the sort of second order thinking that's required. But I think that's what Dan was a bit struggling with there. But I find it an incredibly summative question for both patients and caregivers to sort of. Let's put it all together now. Having talked about function, mood, cognition, daily life. All right, well, what's it like to be, you know, Dan and. And what's it like to be? Dan asked Dan and I also ask the patient, what's it like to be Lois and what's it like to be the caregiver? And, you know, I find that these different perspectives on mind are very helpful. And my clinical practice is organized around can it create a feeling of being us? Meaning that my perception of what it's like to be Jake is Jake's perception of what it's like to be Jake. And if that, if we align there, we have created a feeling of being us. And I think the tragedy that is living with these diseases is when that feeling of us falls apart. And you often see it in the end stages of the disease where caregivers struggle to understand what's going on in the mind of the person and to perceive that not just because language is lost, but aspects of emotion and other nonverbal aspects of connection are really fractured. Having said that, as we've reported in a prior season, episodes of lucidity, even in advanced stage are the norm, not the exceptions, which almost amplifies the super sadness that can be living with advanced stage disease. [00:57:45] Speaker D: Well, I appreciate both your time today and your time with the. The interview, Jason. [00:57:49] Speaker E: Thanks, Jerry. Thanks, Jake. So, Jake, you're heading off to Los Angeles, right? [00:57:53] Speaker F: I am. I'm headed off to Los Angeles very soon for a special episode of the Age of Aging. Yeah, I'll be attending the premiere of a of a play that centers around. [00:58:05] Speaker E: Frontal temporal degeneration and Maurice Revelle listeners will have to wait for Jake to put that together. So, yeah, this is the first Age of Aging roadshow. So Jake, behave, okay? He's off to la. [00:58:19] Speaker F: Yeah, I'm excited. I'm off to Beverly Hills. [00:58:22] Speaker E: All right. [00:58:28] Speaker D: Thanks for listening to this episode of the Age of Aging. This show was made possible by generous support from the Michael Nadoth Communications Hub Fund and our sponsor, the TIAA Institute. The Age of Aging is produced by the Penn Memory center in partnership with the Institute on Aging and the Penn FTD Center. Our team includes Dalia Elsaid, Jake Johnson, Jason Karlewish, and myself, Terrence Casey. Contributors include Nicolette Calcavecchia, Emily Largent, Allison Lin, and Megan Sharp. [00:58:58] Speaker F: Special thanks this episode to Dr. Daniel Gibbs and Lois Seed. If you enjoyed this episode, please consider subscribing to the podcast, leaving a review or giving us a like. These types of things really help others find the show. And if you know someone who might be interested in these conversations, share this episode with them. We also love hearing from our listeners. If you'd like to reach out, our contact information is in the show. [00:59:23] Speaker E: Notes.

Other Episodes

Episode 2

April 29, 2025 00:41:35
Episode Cover

Diet, Exercise and.... Doodling?

At the Penn Memory Center, one of the most common questions we hear is: What can I do to keep my brain healthy as...

Listen

Episode 4

October 28, 2025 00:33:55
Episode Cover

Making Art, Creating Mind

Although the Age of Aging often focuses on science, art has been a recurring theme. In Season 2, Episode 2, “Diet, Exercise, and... Doodling?”,...

Listen

Episode 4

November 12, 2024 00:29:05
Episode Cover

Building Trust

Providing equitable aging research and care faces a major barrier: minorities that are disproportionately impacted by dementia are greatly underrepresented. Data shows that Black...

Listen