Daughter, Doctor, or Both?

[00:00:02] Speaker A: I'm trying to get more comfortable now with speaking more openly about what's happening with my dad. You know, both in private personal spaces but also in professional spaces where I know other people are going through this too, or will go through this or have at some point. And I think if it helps anyone out there to see people talking about it openly, that's all I'm really after. [00:00:42] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain produced by the Penn Memory center and the Michael Nadoff Communications Hub. I'm Jake Johnson. Recently our colleague Alison Lin, Director of Social Work at the Penn Memory center, sat down with Dr. Emma Rhodes, a of Allison's, for a candid conversation about Emma's experience caring for her father, Jack. In 2025, he was diagnosed with dementia due to Alzheimer's disease. Jack is a retired English professor specializing in Romantic literature, which he taught for over 40 years at the Citadel in Charleston, South Carolina. During that time, Emma said he was especially proud of starting and overseeing the Citadel's Honors program. He currently still lives in Charleston with Emma's mother and at the time of recording summer of this year, Jack is dressing, feeding and bathing himself and performs routine chores around the house. He no longer drives and does not manage any finances without supervision. He's experienced behavioral changes. He can become agitated and paranoid and according to Emma, these changes are the current biggest challenges to his well being. This is a unique story. Emma is a neuropsychologist and an assistant professor in the Neurology Department at the University of Pennsylvania School of Medicine. She's a dementia expert working at the Penn frontotemporal Degeneration Center. There she researches the behavioral features of neurodegenerative dementias and provides clinical care and evaluations for patients and their families. Emma discussed her distinct but interrelated roles as a dementia care professional and a family caregiver. Notably, her professional experience doesn't make the personal work easier. That full interview will be available on the Penn Memory Center YouTube page. For today's episode, Editorial Director of the Age of Aging Terence Casey sat down with our executive producer, Dr. Jason Carlowish to talk through some of the key moments from their conversation. This episode is therefore doubly intersectional because Dr. Karlewish brings his own perspective, both as a physician who, like Emma, cares for and studies people with dementia and as someone who cared for his own father until the end of his life living with dementia caused by Alzheimer's disease and late but first, a word from our sponsors. [00:03:00] Speaker C: Picture this A brain that's failing and blazing brighter than it's ever been. That's not a riddle, it's a true story. A composer and a scientist turned painter a century apart, both lost their words to the same disease and both created extraordinary art and music because of it. I'm Jake Broder and I wrote a play about it, Unraveled, making its east coast premiere at Penn Live Arts October 9th, 10th and 11th with a free Brain Health Festival wrapped around every single show. You'll hear the painting and see the music Unraveled. Come and see what a changing mind can create. Get your tickets [email protected]. [00:03:50] Speaker D: 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. [00:04:07] Speaker C: The TIAA Institute wants to help build [00:04:10] Speaker D: longevity literacy to better support outcomes for all. Jason thanks for being here today. [00:04:20] Speaker C: Terry. It's great to be here. This is a really fascinating topic and I'm really keen to talk to you in a similar perspective as Emma, namely as both a professional and also someone in the role of what Emma is in, which is being a caregiver. [00:04:32] Speaker D: Yeah, and I'm going to ask you some more about that and sort of that dual nature in a little bit, but I want to jump right into this interview because we have some really excellent clips. In the first section I want to talk about the dual identity of being a researcher in this space and a caregiver. [00:04:47] Speaker C: And a clinician. [00:04:48] Speaker D: And a clinician. [00:04:48] Speaker C: Yeah. Researcher, clinician, caregiver. Yeah. [00:04:51] Speaker D: We'll do two clips back to back and in the first one Emma talks about being a daughter first despite all of her clinical training. And in the second she describes a moment when she really leans into that professional instinct and it helps her navigate the work of a caregiver as well. [00:05:07] Speaker A: I'm his daughter first and that's where the reaction comes from. Even if underneath that there's a level headed neuropsychologist who probably would have a different response if it weren't my dad. And I think one of the things I've always really loved about my job is that I get to interact with my patients and appreciate them for who they are right now, today without having to grieve the loss of who they used to be. Which I think is not something a lot of dementia patients get. You know, in their day to day life. They are being mostly cared for by people who are grieving a loss at the same time. And it's hard to feel positive and accepting and excited to see someone when you're grieving who they used to be. And so I get this privilege of coming in and spending time with patients and not needing them to be anything but who. Who they are in that moment. But that is impossible with my dad. So I cannot meet him in the same way that I can with my patients, because that grief is so real. And it has been shocking to me how much it makes it hard to see things clearly, to react in a way that, like, I know is professionally right or appropriate. And I had to just kind of give up on the idea that I could be objective or that I was going to be able to do this right or better just because of what I do for a living. I will say, though, as much as that has been true, there was a really meaningful shift, I think, in how I approach him and see him after he was formally diagnosed. You know, we came home from the doctor's office and he had questions about, what does this mean? And what is. How do they know and what will this look like? And I found myself slipping into the professional version of myself. And I realized I was like, oh, I have been talking to people with dementia about dementia for 10 years more. I know how to do this. This I can do. And I. That wasn't so hard. Like, having that in my back pocket as something that I have done a thousand times, actually felt comforting in that moment. And I can't always bring that energy to my interactions with him. But I do know now that it's possible. Like, it's in there. And in certain situations, I can turn on a more, like, professional kind of demeanor with him when I think it would be helpful for him. [00:07:52] Speaker D: So in here, Emma talks about the two versions of herself. We have Emma, the daughter, and Dr. Rhodes, the neuropsychologist. And despite what she wants, it's not always in her control who shows up in conversations with her father. How does that align with your experience? [00:08:12] Speaker C: Completely. And when I, as I listened to these remarks from her, it was a brilliant documentation of what I think everyone in the role of a family member or friend who is with someone with dementia experiences. And that is the uncanny. And it happens early in the course once symptoms are evident and amplifies as the symptoms amplify. And by the uncanny, I mean that peculiar fright that Freud described. It's not a horror, but it's a sense of, wait a minute, this person both is and also isn't who I know them. It's almost like there's Two people there. There's the one I know have known for years. In Emma's case, her father, in my case, my father, but also this different person. And what that leads to is the second phenomenon that I think is almost universal, which is ambiguous loss, and that is the grief that Emma is describing. Emma is vividly describing the experience of ambiguous loss, that her father is both there and not there. A bit of a disconnection loss of who he was that she's experienced, and that is the grief she's experienced. And did I feel that? Absolutely, absolutely. And what that's taught me is the need to be open about that with caregivers, to say there is this feeling of otherness that you may be experiencing when you're with your relative, this uncanniness. And to speak openly about, quite frankly, ambiguous loss, to call it by that name and say that, you know, I can remember. Just to give you some vivid examples, I had my father diagnosed here at the memory center by Dave Wolk. And, you know, I kind of expected the diagnosis. This was not a surprise. But I'll never forget when I actually. I think I went to Allison after the diagnosis and said, you know, my dad is here. Could you come and meet with him and me? Because Dave, you know, told us that he has Alzheimer's. And I'll never forget at that moment, I choked up. I don't think it was enough that Alison noticed. If she did, she didn't. We moved on. But I thought to myself, as for all that I know about this, for as much as I expected it, for as much as when I looked at the mri, I'm like, yeah, I already looked at the mri. I agree with you there. It was this just surge of grief that came from within. But then I suppressed it, and we moved on and had the visit where I was very much about. This is about him and how is he understanding it and whatnot. And there were times throughout his care where I would experience the uncanny. And as a result of that, this sense of ambiguous loss. And in phone conversations, which was how typically we communicated because he lived about two hours away, and we saw each other quite infrequently, to be quite honest. And yet I could pull myself out of that uncanniness and ambiguous loss and do just what Emily did, which is step into the role, which really helped a lot, I think, the knowledge I had about how best to care for him. [00:11:06] Speaker D: Now, does that instinct kick in because Jason becomes Dr. Karlewish or Emma becomes Dr. Rhodes? Or is it viewing your parent as A patient, A bit of both. [00:11:19] Speaker C: You know, one thing that medicine taught me was a very. I think there's a temperament that you have when you go into medicine, which is you can see terrible things, hear terrible things, feel them. But then exercise. What has been described by William Osler as equanimitas, which is to maintain a steady calm. Doesn't mean you're not feeling the emotions the other people are feeling. You're not aware of them, but they don't affect you because your goal here is to put the IV in, test their cognition. In the case of my. I mean, there's no question when I'm testing patients cognition, many of them aren't enjoying it. And, and if I responded to their emotions, I might stop cognitive testing, but I don't, I carry on. Cause I need to get this data in order to help them understand and me understand what's going on. And so I think it's an exercise almost of that kind of equanimitas with my father that I would have to engage in. I know you're feeling this, but in my head I'm saying I need to convince you that it's okay to start having this nurse come over every two weeks to check on you. And I'm gonna engage in whatever level of level headed persuasion I need to do that I would be doing with any other patient. And that was a skill I had. And I was able to tap into it just as I do with many patients and caregivers who I'm having pretty intense emotional connection and feeling with. But I actually have a higher, dare I say higher goal, which is some other aspect of what I do professionally that I think will help them. [00:12:45] Speaker D: Emma talks about how being too close to the problem could actually cloud judgment. Now, when you talked about your father, you said you expected the diagnosis from Dave Wolk. Did you agree with that? Did you ever feel that you could have predicted his diagnosis earlier had it not been your relationship with your father? [00:13:05] Speaker C: That's a good point. There's no question that the combination of my expertise in cognitive disorders in the elderly and my reasonably intimate contact with my father let me pick up his diagnosis before his internist did. No doubt about that. I mean, I remember vividly he was on a our house and he wrote a check for a holiday gift and he screwed up the check a bit and he corrected it. This was a man who was meticulous with money. And that was one of the earliest clues, along with a few others, like there's something going on here and knowing what I know, because finances is a higher cortical activity. We need to take this seriously. And then it was the. I know what we need to do. I know what the next step is. But how am I going to persuade him to take those next steps, which ensued over the coming months? And I'm pretty certain that without that skill set I had, it would have been picked up later. I predicted almost to the month when he would stop driving. I predicted it would happen during a wintertime when the sun sets early. And sure enough, one day in January, he went out for a ride in the late afternoon before he got home. It was dark, and he got lost and ultimately was discovered an hour or two later at a shopping center. And it all worked out, and he never drove the car again. But I knew that was going to happen, and I had plans in place for how we would deal with that. I'll give you one example where I completely failed in my ability to exercise my equanimatus, my professional calm. So my father was a meticulous money manager. He was a meticulous financial person. Money was one of his favorite things. I'll tell you frankly. One time my father told me, I like things more than people. Sounds a little heavy or weird, but that was my father. I mean, he liked his money and his objects, and people were not always so featured in his life. And that's what I was dealing with anyway. So I'm saying that because I knew the money was going to become a problem. The checkbook, the finances, et cetera. And there was no one else in that house to watch over. He lived alone. I knew we got to get on top of this, and I was not going to be able to go up there every other weekend and go over the finances. I had found this marvelous financial manager whose job was, I will help older adults organize their finances, et cetera. I mean, that's what she did. It was a job, a business she created based on her own tragic experience with her parents. Anyway, I'm trying to persuade him to do this, and he's just doing this kind of resistance and questioning it and et cetera. And this is a phone call, and I lose it. I just blow up at him, screaming over the phone, just screaming at him to the point that my husband comes upstairs like, what's wrong? What's wrong? And of course, he starts to hear what's going on. He realizes, okay, that's going on. And then I calmed down. And the next day I called, and his care manager was there. And I said, I apologize for what happened? And ultimately it worked out. We managed to get that person there. But I'll never forget that. Like, I lost it in a behavior that I would no sooner exhibit in the clinic than I would do some other antisocial behavior. [00:16:03] Speaker D: I'd like to pivot to stigma. And we talk about stigma on a macro level quite frequently, both on the Age of Aging show and then in our office and in personal conversations. It is hard to navigate this world as a person living with cognitive impairment, especially dementia. And Emma brings in some very personal, real world experiences about how her father experienced that. I'll play these now. [00:16:29] Speaker A: I think it feels taboo to show our personal selves at work to some degree or another. And certainly when you work in a helping profession, there's a fear of making this work, of caring for others about yourself, which is never the goal. Right. First and foremost, at work, I'm here for my patients, I'm here for their families. I'm here for my colleagues in the research space. And those are the people I. I want to do good work for. But at the same time, to not acknowledge it, to feel in some sense like you're hiding it, it almost feels like you're contributing to a stigma. Like this is something to be ashamed of. And, you know, that wanting other people to see it or recognize the pain that it causes is wrong somehow, which I don't think it is. And so I think I'm trying to get more comfortable now with speaking more openly about what's happening with my dad, you know, both in private personal spaces, but also in professional spaces where I know other people are going through this too, or will go through this or have at some point. And I think if it helps anyone out there to see people talking about it openly, that's all I'm really after. If you work in this field and it's not affecting you personally, just know that you have colleagues, you know, who work in the same clinic hallway as you, who very likely are, whether they'll tell you or not. And, you know, I think that's something that certainly has jumped out at me more, especially in the last year, that I surely knew from an intellectual perspective is just that this world we live in is not a dementia friendly place. When you work in this field and everyone you work with speaks the same language and to some extent understands the disease and what may happen, what can happen, there's just a greater understanding of the stress, the unpredictability, and what's really challenging about it. And so when you work in this space, you kind of can get a biased view of what other people might understand and what they might assume out in public. And I think that a lot of my experiences with my dad in the milder stages were at home or out in public spaces where he wasn't having as much trouble getting as confused or really not understanding the. What other people were asking of him. [00:19:14] Speaker D: I didn't play the clip here, but there was also another part of this interview that stuck with me where Emma talks about taking her dad golfing, which is something they had done quite frequently, and he really struggled to calculate a tip. We just talked about this. The challenges of managing money being a warning sign. And he was mocked by someone at the golf course. [00:19:32] Speaker C: Yes. Teenager. [00:19:33] Speaker D: Yeah. And there was no expectation that he would understand. You could imagine general kindness being on the menu, regardless of stigma. But this was a point that really stuck with Emma. She also talks a lot about contributing to stigma by not wanting to talk about her experience in the clinic space. And you would think this is a safe space. Everyone understands the disease and sees a lot of patients. And yet researchers and clinicians are still feeling that hesitation. Why do you think that is, even in such a safe environment? [00:20:13] Speaker C: Well, you know, it's interesting. Slowly but steadily, I'm noticing amongst my colleagues, we're talking about this. I have several colleagues whose parents have dementia, had it and are dead or are developing signs. And we're getting more. I notice we're talking about it more. And as I have, for example, about my father, I talked about it while he was ill and. And in the years to follow, he's been dead now for about two years. I talk about it. It's made me wonder, for example, there's no question, I suppose I was thinking like neurosurgeons who do brain surgery don't have, I hope the. Oh, yes, I've had my tumor removed, or given the rarity of it, maybe their family member had it. But there are some fields of medicine where personal experience is rare. But there's a lot of fields of medicine where personal experience there, heart disease, cancer, pediatrics, if you've had kids and you're a pediatrician, psychiatry, given the prevalence of mental illness. And listening to Emma has made me wonder to the degree to which, across the professions, we're talking about our own personal experiences. Because I think the value of doing that. Now, back to my field, I'll focus on that which is dementia and the diseases that cause dementia. I think an advantage that I find talking about it with my colleagues is, is it removes any residual feelings of other. Of othering them. This isn't the kind of thing we're dealing with. This has been in my family. It will again potentially be in my family as it might be in yours. And I think it creates a certain. It creates a degree of empathy and connection amongst us, which I think wasn't there when we weren't talking about it. And I think that that's really very helpful for us to do better care for our patients. In my own practice, I will, with specific patients and caregivers, allude to, or even mention directly my own experience, but I'm very careful not to make it about me. What I'm generally trying to do there is to normalize what I am suggesting. I'll be suggesting something like, for, for example, with an adult child caregiver, there's just so much that you should do for this work you personally, as opposed to other people, which is exactly what I did for my father. I had other people doing some of the caregiving work that I could have done, but I didn't want to do it and for other reasons related to my own work and my own life and a variety of matters that I don't need to detail. So I do find the more we're out about this amongst our patients and caregivers and colleagues, I think that we can more candidly talk about some of the tragedies and sacrifices people need to make and frankly educate our colleagues about better ways to care for and diagnose and care for our patients out of our own experience, you know? [00:23:09] Speaker D: Yeah, you've talked about the sort of the moments of recognition as a clinician trying to diagnose a disease. You also talk a lot about stigma in your own research. Did you have your own moment like that with your father? Did you ever notice on a personal level, sort of the challenges of navigating this world with cognitive impairment? [00:23:31] Speaker C: Yeah, a bit. He had neighbors and I found myself having to educate the neighbors to not over call and over register things, etc. And there were moments when I was with him in public settings where his behavior was awkward. And to be honest, a lot of what I felt was just shame. Like I kind of almost call it the transitive property of shame, where welcome to the world of dementia, things get weird because he does something that makes a person A interacts with him, B and I, person C witness it and I feel the emotions that person A is feeling. But my father didn't feel it because he wasn't quite aware of it. It just showed how weird the whole experience could be. There's no question in the memory center. And when I talk to colleagues at other centers, we're more open talking about this in our families. What I think the next event that's going to happen in the field is when one of us is open, that we have Alzheimer's. I have Lewy Body. I have late. I don't right now. I'm fully aware that if I live long enough into my 70s, 80s, it's quite possible I will be a patient. I think one of the big moments in our field will be when people like me say I'm a person living with Alzheimer's. I think that will have a done right, could have a tectonic, revolutionary impact on how the field in America and potentially how America starts to think about these diseases. Because if you think about it, I certainly know physicians who have had cancer. There was a prominent physician at Roche who had pancreatic cancer and wrote about it. There have been physicians who have been out about their als, for example. There are physicians who are now out about having dementia. There's a group called Dementia Minds that has physicians. I've interviewed a few of them. I'm going to hopefully be writing about them soon. So they're out there. They're out there. Of course, there's Dan Gibbs, who wrote his book A Tattoo on My Brain, who was a neurologist. He's probably the first, I think, prominent physician to speak about this. I think the more within our field, the better. You know, we're part of this 30 Center Alzheimer's Center Network. To be blunt, I can't think of within that network any widely known individual who has stated, I am a person living with name the disease. I think when that happens, it's going to be very. Going to be a very important moment for our field, which I think will only be beneficial. But of course, it will be very sad. [00:25:57] Speaker B: Yeah. [00:25:58] Speaker D: Now, you're a pretty transparent, personal person in your writing. Could you be that person if you received a diagnosis? [00:26:07] Speaker C: It's funny, I thought about that. It's easy to say that in the abstract. [00:26:09] Speaker D: Oh, yeah. [00:26:11] Speaker C: But I am aware that receiving a diagnosis of, say, Alzheimer's disease is probably a lot like pregnancy. You can read all about it, talk to people about it, but until you've actually had 30 extra pounds in your anterior pelvis and all the attendant fluid shifts and hormonal shifts, you know, et cetera, you don't know what it's like to be pregnant. You don't know what it's like. And so, you know, so I don't know. I'll have to live it, and then we'll decide. Having said that, I'm a writer, and writers tend to be very colonizing of the world around them when they get a good story. When they get a good story, they want to use a good story, and that would be a good story. I think one of the value of people like Emma and myself talking about our roles as caregivers is it breaks down this weird border between the lived experience of the patient and caregiver and you professionals who don't know what it's like. And I'll be honest, that really pisses me off. And when, for example, the FDA mistakenly gave accelerated approval to Aducanumab, and I stepped forward and said this was a failure of regulatory science, et cetera, I remember critics saying, well, you know, you don't know what it's like, this disease. You don't know how bad it is. You don't know how desperate we are. And finally, I was actually at one time on NPR1A talking about educanumab. I happened to have been in my car in a parking lot driving north to New Jersey for a meeting with the care manager for my father to do this interview. And that's when I said, you know what? I need to let you know that I'm actually in a parking lot driving to my father's house, who has dementia, and in order to deal with his care. So this idea that I don't know what it's like is just nonsense. And I do think we need to break one way we can break down this false barrier that the professionals don't know what it's like. And we people in caregiving roles, although true voice, it's like, well, that is correct for some cases, but for people like Emma and me, we know what it's like. [00:28:14] Speaker D: Yeah. Earlier, we talked about how Emma's experience as a clinician and a researcher informed how she could care for her father. But she also learned about being a clinician from caring for her father. And in a couple of segments that I'm gonna play in a minute, one thing she talks about a few times is the lesson of how much of an emotional toll and a physical toll the clinic visit can be. I'll just jump right in to play them. Yeah. [00:28:44] Speaker A: I think I have honestly heightened sense of gratitude for the research participants especially, but also my patients, just for the time they commit to coming in to be evaluated clinically, but then to go kind of above and beyond and want to donate their time and their Energy and their effort to participate, participating in research. I mean, this has always been something that, again, intellectually, you know, is like a selfless and generous thing to do. But I think that's something I didn't quite see as a provider that now I see clearly as a family caregiver is how much those visits take out of you, how much coordination goes into getting someone in the car to the office on time, without an outburst, without agitation. And so I think, trying to keep in mind for me that when I do see patients in my office, especially when I have patients come in for these long assessments, that is a real feat to come in, to do that, to hear the news we have to give families. There's so much processing and, and digestion that happens after they leave, that I think as a provider, when someone leaves your clinic room, you kind of exhale and you get to move on with your life, with your day. But knowing that on the other side of it, for the families and for the patients, there's often a lot of difficulty. [00:30:20] Speaker D: So we talked a little bit earlier about this compartmentalization that you decide you need to approach this as a clinician and you adjust your mindset. How has your experience as a caregiver changed the way that you walk in and out of a clinic visit? Were you experiencing what she described as understanding of what their morning must have been like before then or after? [00:30:46] Speaker C: No matter how rushed I might feel, I never show it. Never is a strong word. I make great effort not to show that I'm rushed, that I'm running behind, and I reassure people that they have all the time they need. And when they show up late, which some do because the struggle of coming in, which has been well narrated, and once they even arrive, getting from the parking up to us, not a problem, don't worry, meaning we may not be seen for a little longer because you came in late, but we'll work this out as opposed to, you know, you were 30. You know, technically if you're 30 minutes late for your appointment, your appointment can be canceled. I understand why that rule is there. I make every effort not to enforce that rule as best as I can, which I typically therefore don't. And I am very mindful that cognitive testing is stressful and I'm very mindful that stress is going to bleed over to the family when the visit's over, et cetera, and in the prelude to the visit and acknowledge that. And then finally, I agree. Research is work. It's work for anyone in research. You know, the 30 year old with asthma is in an asthma trial, there's work. You gotta fill out the forms that come in for the visits. Research in the space of dementia, that's a lot of work. I gotta drive into the visits, et cetera, the time waiting between the assessments. And we try to acknowledge that, not just by acknowledging it, but by paying. This is time. And how are we going to reward that time? With money, as best as we can within the budgets of the research and the limits that the IRBs sometimes set on what they think is fair compensation. And then finally, we're very aware of the work of the treatments. The anti amyloid treatments require a lot of work. For many, that's work worth doing, but it needs to be acknowledged. And I have had some where that work looms very large as a reason why they really debate why to take the therapy. And that's a very reasonable reason not to take therapy or to consider stopping therapy when the work is overwhelming. Caregiving is work in terms of time and task and the mental work. An hour of caregiving is not just an hour, it's a different feeling of an hour. [00:32:48] Speaker D: One of the other things that Emma gets into is exactly that, talking about the work of the caregiver and the amount of time and energy that it takes. And she was quite open about taking sort of an extended FMLA so that she could balance the work for which she is paid and the unpaid work of caring for her father. I think we hear a lot of people in this field, particularly here, talk about their experiences caring, but I don't think we hear a lot of people talking about that taking time out of their career to be a caregiver as much. Should we. Should we be talking about that? [00:33:26] Speaker C: Absolutely. And we do. Yeah, absolutely we do. And that's on my mind when I'm seeing, talking with the caregiver. Typical clinic visit, I meet with the caregiver first privately, I meet with the patient privately, and then I meet with the two of them or more together at the end of the visit. And one of the things I've integrated into my assessment that involves my conversation with the caregiver is a question that comes at the very end of the assessment, which is, how are you doing? And then I pause and wait, listen to the answer, probe it, et cetera. And once I feel we've got that question answered, the next question is, is there anything you need? And some, many will volunteer specific things they need, but others will not or fail to volunteer some things that I think they need. And one of them is just this that you've mentioned, namely the ability to take time from work, et cetera. And I'll be proactive and bring that up, for example. Absolutely. [00:34:22] Speaker D: It seems like a very simple question, how are you doing? But that can really open the door to sort of the most important conversations, not just with patients and their caregivers, but colleagues working in this space. And we talked about how we all need to be talking about our experiences as caregivers and patients, research participants. Emma was pretty open about seeking out that support. But this interview was intentionally done with Alison Lin, who is a. Not just a colleague, but a close friend who routinely asks that question of Emma, how are you doing? And Emma even goes as far to say that support groups are helpful, but perhaps there's a role for support groups for people in her space or people in your space who have been both professional and a caregiver. [00:35:09] Speaker C: I think there is. Because we're sort of a unique group of people. I think this episode has made it very clear. We're a very unique group of people. And just like there are support groups specifically for adult children or spouses, different age ranges, et cetera, one could make a strong case for the need to address the specific kind of support that someone in the roles that Emma is in and that I was in and may very well be in again, because that's the way life is and there's a real role for that. I agree. [00:35:34] Speaker D: Yeah. So let's hear a little bit about what she has to say on that topic. [00:35:38] Speaker A: I have been in a few support groups that meet online, which has been really super helpful. You get, you know, to hear other people's experiences. You get to hear, you know, like, ideas of, like, ways that you could approach a situation differently. But you also just get this camaraderie in this sense that, like, other people are there who do understand, like, what that day to day experience is like. And that's so valuable. Like, having sympathy from people who love, love and care for you and want the best for you, but who have not been through it is like, it's great, it's so important, but it's not the same as talking to people who, like, this is their lived experience too. And so I really can't say enough about the support groups. I think it would be lovely if there were a way to find a community in those people. I think it could be really powerful to have a support group with people who are dementia care professionals and also family caregivers. You know, maybe that will happen someday. But I think if, you know, people who are going through it, ask them how they're doing, stay close. And you know, I know everyone in our offices, you know, like, nobody is out there dehumanizing people with living with these conditions. But I think that, like, you know, remembering that our, our families are your [00:37:15] Speaker D: patients too, you know, at the Penn Memory center, we have a lot of resources that are not necessarily as available elsewhere in the country or the world. And one of those is, is the support groups. I think just in the time that I've been here, we've gone from having the support group to support groups for patients and caregivers and research participants and people with different diseases. So we can really find your niche community here. That is great for our patients. But what would you recommend to people who don't necessarily have access to the Penn Memory center resources seeking out support? [00:37:55] Speaker C: Yeah, well, many health systems have subscribed to the guide program, which is a Medicare demonstration project. So unfortunately it could end in eight years. But many health systems are participating in guide and guide provides for caregivers, education, services and support. So I'd want to find out, is my health system participating in a guide program? That said, if the answer is no, does the practice have a social worker affiliated with it? If the answer is yes, meet with them. The Alzheimer's association for decades now has run a helpline which is also an avenue for getting access to support. And then finally, there are individuals who are sell professional caregiving. That's their job. And I would want to look up and find those individuals if they're in your area. [00:38:36] Speaker D: For better or worse, it's very easy to find community online. I think a lot of people's instinct if they don't have access, is to just do a quick search and see what they could find. How do people. What caution would you give to people just blindly seeking out groups like this? [00:38:55] Speaker C: All the houses of online noted. First of all, I want to make sure they're real humans given the articulate voices out there that are entirely artificial. Large language models. I'm only partly joking. I have noticed some caregivers beginning to use large language models to begin to provide support. I think they're good for facts and information. I'm not quite confident, though, that I'd want to have a large language model be my help me understand what it's like to be a human caring for another human. [00:39:21] Speaker D: That could be a whole other episode, I think. [00:39:23] Speaker C: Yeah, yeah, yeah. I need a human mind to help me care for my mind. [00:39:26] Speaker D: So Emma ends with our families. Are your patients too? Yeah. [00:39:29] Speaker C: Absolutely. [00:39:30] Speaker D: How did you react when you heard that? [00:39:31] Speaker C: She's totally correct. She's right. I mean, I think it hammers home a point that I don't want to medicalize the family members. And, you know, you are patients. But they're not just unpaid, neither maids nor nurses nor butlers. They're in this very unique role of providing mind support for someone whose mind has been altered by a disease like Lewy body disease or late or Alzheimer's disease. And that work requires training, education, support. And tragically, particularly if you're someone like Emma or myself, with my father, you know, the individual, there's this inherent experience of the uncanny and ambiguous loss, and we have to acknowledge those things. We don't have to maybe consider them as patients, but we have to acknowledge that they need our attention in the same way the patients need attention. [00:40:20] Speaker B: Great. [00:40:20] Speaker D: Well, thank you so much, Jason, for helping unpack this interview today. [00:40:23] Speaker C: Yeah, it was fantastic. Again, I applaud Dr. Rhodes, Emma, my colleague, for her candor and honesty. She and I have chatted about this and, you know, I've started out when I first spoke about my father, he was. I think I made him an uncle, for example, et cetera. And then at some point, I just crossed her and I said, let's just come out fully here about who he is and what's going on. And it's helped me a lot, and I hope it's helped others to listen to our stories. [00:40:51] Speaker B: Thanks for listening to this episode of the Age of Aging. Special thanks to Emma Rhodes for sharing her story and Alison Lin for conducting that interview, as well as today's co host, Terrence Casey and Jason Carlewish. If you would like to watch the full, unedited interview with Emma and Allison, you can find that on our Penn Memory Center YouTube channel. If this episode resonated with you, please subscribe, leave us a review or share it with someone who would appreciate it. It makes a real difference in helping others find the show. And if you have a topic you'd like to hear, email [email protected] the age of Aging is a Penn Memory center production made possible by generous support of the the Michael Nadoff Communications Hub Fund and Lena Chow. Our team includes Morgan Adams, Terrence Casey, Dahlia Said, Jason Carloish, Emily Largent, and Allison Lin. I'm your host, Jake Johnson.