[00:00:00] Speaker A: Jason I'm Jason Karlewish, co Director of the Penn Memory center and Executive Producer of the Age of Aging. Before today's episode, I want to tell our listeners about a new book, Dementia Care's Radical New Era, published by stat.
As you may know, for the past several months I've been writing my neurotransmissions essays for STAT and was honored to be asked to write the introduction and and contribute a selection of my essays along with reporting from my STAT colleagues.
Dementia Care's Radical New Era is a comprehensive STAT special report that examines the breakthroughs, tensions and emerging strategies reshaping the diagnosis, treatment and care of persons with the diseases that cause dementia and the future of cognitive health. The link to purchase this special report will be in this episode's show Notes and also on my website, JasonKarlovich.com use promo code Aging at checkout for 50% off your download of Dementia Care's Radical New Era. Again, that's a g I N G for 50% off this report.
Okay, then, back to the show.
[00:01:24] 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 Terence Casey and this is our Season five finale.
It's been a remarkable season filled with stories we've wanted to tell since we started this project. Practical tips about managing your money and diet, stories of 80 year olds running in the Penn Relays, an 82 year old's met Opera debut and and the complex but common experience we call ambiguous loss.
This is a collection of stories you won't find anywhere else, and on behalf of the whole Age of Aging team, thank you for listening.
At the end of each season, we try to find a way to bring back some of the voices that have made that season possible.
For Season five, we decided to try something new.
We asked our team members and our guest hosts to each record an audio essay a personal response to a publication which been talking about for months. That publication is a special report from the Hastings center for Bioethics titled Living with Learning from Cultural Narratives of Aging Societies. The report was edited by Nancy Berlinger, Senior Research Scholar at the Hastings center, and it brings together bioethicists, humanities scholars, social workers and researchers to explore how the stories we tell about dementia shape the lives of people living with dementia and those who love them.
You'll hear from our executive producer and Penn Memory center co director Jason Karlewish from me, from bioethicist Emily Largent, from our producer Jake Johnson, and from Dr. Holly Elser, our Age of Aging resident epidemiologist. Each of us chose a different essay from the report, and each of us came away with something different.
I'll be back at the end with Jason and Jake to unpack what we've heard. But first, a word from our sponsor.
[00:03:09] Speaker A: Caring for an aging loved one isn't easy, but you don't have to do it alone. At Rothkoff Law Group, we guide families throughout New Jersey and Pennsylvania along every stage of your aging journey. Our team of elder care attorneys, care coordinators, public benefit specialists, and elder care advocates ensure your loved one's well being and your peace of mind. Rothkof Law Group, your partner in elder care advocacy and senior care planning every step of the way.
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This is Jason Carlosh. I'm a faculty member at the Perelman School of Medicine, co director of the Penn Memory center, and executive producer of the Age of Aging podcast.
The essay I picked is Managing Assistive Technologies in Dementia Care by Mercer Gary, and the timing on my reading of this was really quite auspic because I read it a few days after Pope Leo issued his encyclical on artificial intelligence, Magnifica Humanitas. I might not have the Latin right, and it's the Pope's effort to address what he considers is the fundamental moral challenge of artificial intelligence. And this essay was really a splendid conversation between, if you will, what Gary said and what our pope said.
What Gary's taking on is an increasing important question, which is what is the role of technology in the care of persons living with dementia? And as a clinician and a thinker, this is a huge topic, both for my patients as well as for society. And what Gary recognizes is there's two sort of stereotyped caricatures, if you will, about technology and its role in dementia care. The first is this kind of deep concern that technology will create what he calls a pernicious dependence.
And the second is this caricatured view that technology is this way out of dependence. It's going to liberate us from dependence.
And his fundamental argument is that both of these arguments have within them very appealing points, but are really caricatures that, if you will miss a fundamental third way for the role of technology. It's one I agree with, and quite frankly, just to go back to my beginning, it's one that I think the Pope agrees with too. So let me Just quickly sort of summarize his points about the two sort of caricatures. First, pernicious dependence. And it sort of picks up on the arguments made by Sherry Turkle in her book Alone Together, which is that technology is fundamentally a threat to the human moral life. And I think in particular, the more various large language models come into practice with agentive abilities, this worry is quite legitimate that we will surrender something about what it is to be human the more we rely on these non human minds to support our minds. Which is, I think, a point that certainly would resonate with Pope Leo.
And the origins of this kind of critique is one that fundamentally recognizes there's something about the act of caring and being cared for that is essential to create the human moral life. And if you take away that interaction amongst humans, you take away something that is essential to being human, and therefore in some way sort of degrade or degenerate or morph humans into something that is not human.
And I think many of us who have been in a caregiving role or received care can recognize this. There's something about human touch, for example, and feelings of empathy, et cetera. But of course, the point if you think about dementia care is it's time and task. And it starts to turn the role of the caregiver into this sort of like unhuman individual capable of constant supervision, constant engagement, constant presence, turns them into these sort of extra human characters. It reminds me of an episode of Age of Aging we had a few seasons ago on Lewy Body Disease, which was kind of an entry into the. One of the most challenging diseases to care for as a caregiver.
And in this romantization of sort of the caregiving role, of course, what you then come up on is you look at who are caregivers in America, particularly people who. It's their job, and you find this weird devaluing of those individuals at the same time. So I think what Mercer Gary is getting at with his critique of this pernicious dependence on technology is there's a point here that's very important, but it exaggerates the role of the caregiver in a society where actually we haven't yet figured out how to value individuals who do provide care.
Which leads us in some sense then to the other side, which is technology as a path out of dependence.
Namely here the view is, you know, technology will liberate us from the need to be cared for, that we will have all kinds of devices, particularly smart, personalized agentive devices, various robotics, et cetera, that will liberate us from having any need for anyone else to care for us.
And as someone who actively uses a smartphone, I get it.
But on the other hand, the problem with that narrative is, of course, is that it's really actually not true because humans are behind those devices.
Humans are deciding what the defaults are, humans are deciding what are the forbidden questions that AI can or can't answer, et cetera. And so you actually don't free yourself from other humans. In fact, there's a pernicious presence of other humans, humans, you have no idea who they are, quite frankly, people like Elon Musk who control all of these technologies, who are behind these various agent of AI technologies, et cetera. So it actually is a more pernicious kind of invasion into dependency, namely, you're dependent now on people you don't even know.
And of course, back to the other critique. Where are the humans? Where's the warm touch, the gentle feel, the true feeling of empathy? And so I think what you're seeing is that what Gary arrives at is there's a. The fundamental thing that we're trying to do with either humans or technologies is to manage dependence. And we just simply have to respect the fact that dependence is part of being human. People with dementia amplify that. But they are not unique in the need for other people, even the most healthy and well of us. Which of course undermines an American ethos of the frontier for forward facing, go it alone, typically man, which simply isn't the case. That is to say, all of us need each other in order to flourish. And really the question is, what is the proper role of humans, that is to say, carbon based intelligence, carbon based minds and the role of silicon, that is to say artificial intelligence and related technologies to allow us to flourish.
And I'll wrap up as we approach the 250th anniversary of our country, that I think it's a particularly apt time to reflect on the nature of human dependence. Because, you know, this is a country founded on principles of life, liberty and the pursuit of happiness. And I think our desire for liberty is one that we take very seriously. We value our, quote, independence. And indeed that sentence I quoted was from our Declaration of Independence. But I think our founding fathers were very aware of something quite important.
They were seeking political independence. They were seeking the ability for the rights of people. They speak of the rights of man, but the rights of humans.
They clearly recognized the need for communities of association. I think that Jefferson, Adams and Franklin, you know, the key authors of that Declaration of Independence, were very aware of how we are mentally interdependent and the need that we have to support each other. And certainly Franklin and Jefferson, given their love for inventions of the value of a variety of technologies as well, so Managing Dependence Assistive Technologies in Dementia Care by Mercer Gary in the Hastings Special Report Excellent essay, very readable and it was a pleasure to share it with you, the listeners of Age of Aging.
[00:11:19] Speaker B: Hi, I'm Terence Casey, co host of the Age of Aging podcast, and for this finale I chose Julia Henderson's essay Implicit Narratives in Participatory Arts Collaborations with People with Lived Experience of Dementia.
The reason this caught my eye immediately is Anne Basting.
Anne has been a recurring presence on the Age of Aging. She's appeared in yes and Arts on the Mind and what Does Spring Smell Like? She's one of my favorite guests that we've ever had, and her creative care work is something I find myself thinking about all of the time.
The author uses Ann's projects as one of three major examples of how participatory arts programs are quietly and powerfully rewriting the stories that we tell about dementia, and that framing implicit narratives is what got me the author isn't just documenting cool projects. She's arguing that the way that these projects are designed, funded, and shared in public spaces sends a message that most clinical environments never do. That people living with dementia are not subjects of care.
They're collaborators. They're contributors. They're creative.
Anne's Penelope project is a good example of what that looks like in practice.
She brought together residents of a long term care facility, a professional theater company, and university students to collectively retell Homer's Odyssey from Penelope's point of view and then stage it for paying public audiences.
My wife teaches classics, so she'd probably love that choice. But more than the subject matter, what strikes me is what the project was actually doing underneath the surface.
Residents with dementia were developing the story, performing music, creating set decorations. It looked like putting on a play, but what it was doing was providing cognitive stimulation and social engagement, community building and creative expression.
All things that we recommend for brain health under the COVID of just doing something meaningful and fun.
And that's the quiet genius of Anne's work, and the author captures it well.
These projects don't lead with outcomes, they lead with wonder. And as it turns out, wonder is good medicine.
Another Anne project that has always stayed with me is the Crossings, which isn't in this essay, but it lives in the same spirit. She partnered with a senior advocacy group in Milwaukee to address a simple cruel problem.
Older adults with mobility challenges were living across the street from grocery stores and food sources, but the pedestrian crossing times were so short that the street had become completely impassable. So Ann and Sojourn Theater turned the crossing itself into a performance.
Participants carried sheets on poles and dressed as the flags sails of a tall ship processing through the intersection, with mayors and city officials alongside them.
It drew press attention, civic attention, and probably some very confused drivers. But it changed the crossings. And that's what art can do when it's aimed at the right target.
At the Penn Memory center, we try to live some of these values. We have Cognitive Comedy, a virtual improv group. We have Community Voices Choir, which pairs older adults with professional singers from organizations across Philadelphia.
We have Creative Expression Through Music, where our patients and their caregivers work with students from the Curtis Institute to learn music composition together.
And we've seen what Henderson describes on our own podcast in our episode Making Creating Mind. We heard from Joe Vanek, a stage designer who experienced a stroke and found that it actually changed how he experienced time and creativity.
And from Nisa Becker Procaccino, a professional illustrator who stopped working after an Alzheimer's diagnosis but eventually returned to art as a way to heal and reconnect that return, that reopening. It's not an exception, it's a pattern.
Henderson's essay helped me articulate something that I've been circling around for a while.
We talk a lot in dementia research about what is lost cognitive function, independence, memory and those losses are real and they matter.
But there's another story running alongside that one, and it doesn't get nearly enough airtime. It's the story of what remains creativity, connection, and the capacity to make something with other people and share it with this world.
[00:15:52] Speaker C: My name is Emily Largent, and I'm on faculty at the University of Pennsylvania Perelman School of Medicine, where I'm also the chief of the Division of Medical Ethics. I work with Penn's Alzheimer's Disease Research center on understanding social, ethical, legal, and clinical issues along the Alzheimer's continuum.
In my work, I often note that what we see as new problems other people have faced those problems, or at least similar problems before, and we can often learn from how they handle those problems, either drawing direct lessons or drawing analogies that are informative to us now.
That's why I pitched the article History and the Challenges of Dementia by Jesse Ballinger. Professor Ballinger's background is in history of medicine, and he has written extensively on the ethical and policy implications of dementia.
This article begins by noting that the symptoms of age associated cognitive decline have been widely recognized throughout history.
Yet our understanding of dementia has changed over time. First it was thought of as a normal part of aging, and only more recently has it been thought of as a disease that could be distinguished from normal aging.
And with these changing understandings, our attitudes towards dementia have changed as well.
Ballinger gives the example of Ralph Waldo Emerson, the American poet and essayist who seems to have been fairly accepting of his failing memory. In the late 1800s, Emerson was writing a letter to a friend who had inquired about his health. Emerson wrote back that he was quite well, adding, I have lost my mental faculties, but imperfectly well.
It's notable to me that Emerson stated this as a fact and apparently didn't respond with the existential dread that so many of us take as the natural attitude towards experiencing cognitive impairment.
To be clear, Ballinger is not suggesting that Emerson or others from past generations were indifferent to dementia. In fact, he acknowledges that cognitive impairment has always been understood to entail certain losses.
But Ballinger asks us to see anxiety about dementia as a threat to selfhood, as historically contingent as a particularly modern phenomenon.
In the article, Ballinger argues that particularly in the 20th century, people came to understand identity as something they created. They made deliberate choices over their lifetime to construct a self. Dementia, with its negative effects on memory and thinking, threatened to destroy this identity, undoing the work one had done to build it up.
Ballinger ties today's substantial anxiety about dementia to medicalization of Alzheimer's disease and to a drive to treat, or, ideally, to cure it. This drive has made Alzheimer's attractive to the marketplace, though this has been better for drugs, which can be commodified, than for behavioral interventions, which are harder to commodify even when there's good evidence of their benefits.
To be clear, Ballinger does not dispute the suffering of people with dementia or their families. Nor does he question the importance of finding interventions to alleviate this suffering.
Instead, he asks us to use history as a means of questioning dominant social narratives about dementia.
Particularly appealing to me, historical inquiry might also help us reveal social values other than individualism that could help us meet the challenges of dementia.
As someone who studied ethics, law, and health policy, I was trained to think that laws and policies are, whether implicitly or explicitly, expressions of our values. I find that looking at problems through lenses of values such as vulnerability, interdependence, and the common good, rather than relying on values like personal responsibility or rugged individualism, can offer new insights into why and how to address social problems. Problems like how to better support persons living with dementia and their care partners. That's the work I strive to contribute to every day at Penn.
[00:19:47] Speaker D: Hi, my name is Jake Johnson. I'm the producer and co host of the Age of Aging and and the article I chose to talk about today is called Imagining Ourselves into the Lives of People Living with Dementia. Toward New Narratives of Aging Societies by Nancy Berlinger and Janelle Taylor. I chose this essay because I found it to be the most relevant to what we do at the age of aging, which is tell stories about aging and dementia, which is something we as a team take really seriously and the authors of this piece argue is a really important part of creating a more just world for people with dementia and caregivers.
So in the essay, Berlinger and Taylor essentially argue that a more just world for people with dementia and their caregivers begins with the cultural narratives that we have about aging and dementia.
And unfortunately, there are a lot of narratives that have some truth to them but ultimately miss the mark and can actually be counterproductive to improving people's lives.
One narrative that they give the example of is the idea that dementia care is better in blank country or blank place.
They even cite the dementia villages from the Netherlands, which we talked about in our episode the Miracle Kitchen from this season. And whether or not these places have systems that are better than what we currently have in the United States is one thing. But Berlinger and Taylor argue that this narrative appeals to a utopian ideal that's kind of a dead end because the US doesn't have the same social welfare systems as countries like the Netherlands. And even if dementia villages became more widespread in the US it wouldn't necessarily mean that everybody can afford to have their parent or loved one live in one of these villages.
Another narrative that we have about dementia that they talk about as being flawed is this idea that as long as you plan ahead, you'll be fine to support a person with dementia down the road.
And this narrative ignores a lot of the systematic failures that we have in this country to support older adults and suggests that anybody can get to a level of wealth where they can support someone out of pocket, which we know is just not true. So this is something we were thinking about with our recent episode Wealth Care, that on top of, you know, the personal tips that some of the experts shared in that episode about financial planning for longevity, we wanted to make sure that we talked about things like employer support for flexibility for caregivers, as well as paid family leave for all being something that we should strive for as systematic changes that could improve the lives of aging adults, caregivers, and people with dementia.
So in order to tell different cultural narratives towards a more just future, Berlinger and Taylor say that we need to first imagine ourselves in the lives of people with dementia as well as the lives of caregivers.
If you were a person with dementia, what would make your everyday life easier and more manageable?
And instead of falling back on tropes of the quote unquote agitated person with dementia or the quote unquote content person with dementia, really try and put yourself in that situation.
And the same goes for being a caregiver, which in some ways might be easier for many of us to do because. Because many of us are caregivers or no caregivers. What would the reality of that situation be? Not in its ideal sense, as somebody that has a lot of means to take care of somebody and all the support they could possibly want, which we would all want, but we're not necessarily going to have. But what would it actually be like if you were an everyday working class person trying to support someone in your life that has dementia? And Berlinger and Taylor point out that this is an uncomfortable thing to do, but that discomfort is incredibly necessary because it's how we start to actually get to the reality of dementia care.
So two actionable proposals that Berlinger and Taylor end the essay with, I think are really great. And both rely on the starting point of friendship.
So the first proposal is finding new cultural narratives of dementia through friendship with people with dementia or through the friends of friends of people with dementia, essentially to understand what we will collectively need on a macro societal level. We need to start very personal through the needs and challenges of the people we know that have dementia.
And then the second proposal is to use caregiving as a starting point for social connection.
So many of us are or will become caregivers at some point, particularly in midlife. So let's use that shared experience to connect, to support one another and ultimately imagine what could be changed or improved in our local community that would make us feel better supported.
I thought those were great takeaways that I will definitely keep in mind as I and the rest of the Age of Aging team continue to work on this podcast. And I want to make sure that we're always telling stories that can lead us towards a more just future for aging people. And I think that starts with the experiences and stories of people with dementia and caregivers.
These stories are never simple, and my hope is that in avoiding simple stories and telling ones as close to the truth as we can get. We help show aging not as something we want to avoid at all costs as individuals, but as a process we're all collectively experiencing and can improve for one another.
[00:25:08] Speaker C: My name is Holly Elser. I'm a fellow in the Penn Memory center right now, and in July I'll be starting a faculty position at the Penn Memory center and at the Philadel, va.
The essay that most stood out to me within this collection is entitled Supportive Housing as a Promising Practice for People with Dementia by Ian Johnson, and the essay begins by framing a problem that is well known to any practitioner who cares for persons with dementia. Remaining at home rather than in a dementia care or other nursing facility is the overwhelming preference among people with dementia and their caregivers.
But continuing to live with family members presents challenges related to symptom management, safety, and also social connectedness.
And as dementia progresses, even greater time and financial commitment is often required from family caregivers.
In my own experience, many families also experience a tremendous amount of guilt when they start to consider an alternative like assisted living or memory care, even when the care needs of their loved one have exceeded what they can feasibly offer at home.
So this essay introduces supportive housing as a potential solution. The term supportive housing refers to community based housing that offers rental units with on site or nearby services needed by residents and a little bit of history. Supportive housing actually emerged as a solution to the psychiatric deinstitutionalization in the United States that took place in the middle of the 20th century and aimed to provide peer support to residents as a bridge to community integration.
The essay argues that because supportive housing co locates rental units with frontline supportive housing staff, it offers an alternative to or disrupts the binary between a healthy person aging in place and a dependent person in a nursing home.
Reflecting on this essay at the end of my clinical training in behavioral neurology, I've been thinking about the role of non traditional living arrangements like collective or supportive housing in caring for aging persons with dementia.
And more broadly, I've been reflecting on the fact that part of my job as a person who manages disease progression and dementia is so much more than prescribing medication, and that the heart of what I do is really helping my patients and their families think about how they spend their time, who they spend it with, and where they spend it.
[00:27:48] Speaker B: Welcome back. I'm here in the studio today with Jason Karlewish and Jake Johnson, and we're here to wrap up Season five of the Age of Aging. Thanks for joining us, Jake.
[00:27:57] Speaker D: Yeah, great to be here.
[00:27:58] Speaker B: And thanks for joining us, Jason.
[00:27:59] Speaker A: Yeah, great to be here.
[00:28:01] Speaker B: So we. At the beginning of the episode, I spoke briefly about some of the. The diverse topics that we had this season. Jake, was there anything that stood out to you?
[00:28:10] Speaker D: Yeah, I have to say that my favorite episode this season was the Miracle Kitchen. I just loved working on this from start to finish. The research was really fun. I love when our show starts to incorporate all of these different areas of expertise. So for that one, I spoke to architects, architectural historians, and really got a sense of the way in which our relationship with our environment impacts us, impacts people with dementia. It drew me back to my sociology major roots in college. The way we think about the world is reflected in the things we create, and vice versa. That kind of relationship, back and forth.
[00:28:50] Speaker A: The built construction of the human mind.
[00:28:52] Speaker D: Yeah, exactly.
[00:28:53] Speaker A: How's that for sociological terms? Yeah, exactly.
[00:28:56] Speaker D: And then we ended that episode with these architects that build spaces for people with dementia and using their philosophy for creating these spaces. The idea of cognitive load, which I had never heard before, was a big part of it, so I just really love that one. It took all of the things I love about making this show and put them into one of the shows.
[00:29:19] Speaker A: Yeah. And in some sense, we closed out with environment, too. You know, sort of like the world around you seems so obvious. Like, the rooms you're in are, of course, there have to be a room, There has to be a floor, there has to be a ceiling. And yet choices are made to make a room, design it, fill it. And of course, we ended with air, the air we breathe. And that was a great episode, too, where you also, using the similar kind of reporting skills, dove into the science around how the air we breathe can cause us to develop dementia. So awesome episode.
[00:29:45] Speaker D: Yeah. Yeah, I love that one as well. A very similar case where I'm talking to a neuropathologist and then a clean air advocate and somebody from the American Lung Association. Just all these different experts approaching something from different angles. I just love that.
[00:30:01] Speaker B: What I really appreciate about both of those episodes is how accessible we had made concepts that were previously seen in PowerPoint presentations in academic communities, that we were not only telling the stories to a general audience, but including them in the storytelling. And so I think that is a really effective way to practice accessible science communication. So nice work, Jay.
[00:30:24] Speaker A: How about you, Terry? What was your favorite science?
[00:30:26] Speaker B: I have my own personal bias here. I loved the Mindful Diet episode. It was really nice to work with my sister on that. And have a formal interview with her that was interrupted by her niece and nephews the whole time. But truly it was one of the most impactful on a personal level episodes. I made a promise to Jake during the recording of that that I was gonna adjust some of my diet habits here. And really ever since I've been meal prepping a turkey quinoa vegetable bowl that I've had for lunch most days that I've been in the office ever since.
[00:31:02] Speaker A: Yeah, that was another good example of an episode of like something that's obvious and around us. I mean, I think one of our entry points for why we thought it was so important was you got to eat.
[00:31:10] Speaker B: Right.
[00:31:10] Speaker A: I mean, there's all these modifiable risk factors for dementia that you kind of have to choose to do and then do it. Like running exercise, which we did an episode on as well.
But there's no way you can't eat because if you don't eat, you're going to be dead in 40 days from. You'll be dead.
But the question is how to eat. And yeah, I thought it was.
I too took away some key points from her about a diet, namely like, it's okay to have a cookie, but it's called enjoy that one cookie and not the ten that follow.
[00:31:37] Speaker D: Yeah.
[00:31:38] Speaker B: And Trish and I are actually going on tour this summer. We have a presentation that was inspired by that episode. We'll be speaking out at Penn Medicine Princeton about the mindful diet and how to have it impact brain health. So we're taking age of aging on the road. Yeah. Jason, how about you? What stood out to you this season?
[00:31:56] Speaker A: I guess I'll be a little solipsistic. I really enjoyed kind of bookends of two things, kind of that show how I think about this vast problem called dementia. One was Sprechstimme, which was my interview with Lucy Shelton, the 82 year old accomplished singer who made her met opera debut in the Innocence. And I really enjoyed conversing with her about how much music gives her meaning and sustains her as she enters now her eighth decade of life.
And also a side conversation, if you will, with her about her role in the opera Lucidity, where she actually played a person living with dementia and what it was like to do that. And I think it revealed sort of the power of the arts, number one and number two, artistic depictions of persons living with dementia to help us figure out how to live well with these, the diseases that cause dementia. And then the other one was Fragile Science where I played the amateur Historian. I seem to like to constantly pretend I am, and I will reiterate, and it's only getting more notable as political events heat up in the world, namely, the more we have feelings of economic and social disarray, that fragile thing called science becomes harder and harder to want to support.
I see now in the 21st century, many of the themes in the early 20th century that shut down dementia research, I see those themes repeating themselves. And I think we're going to come back to this topic again.
[00:33:17] Speaker B: Yeah, I think it's a nice segue especially.
Well, actually, both those episodes combined, leading back to the Hastings center report that we previewed today. It was a complicated intersection there of both science and narrative and bringing in humanities and social justice. Justice policy, absolutely. So it was kind of a natural fit for our combined interests and the Age of Aging show in general. I'd like to talk about it a little bit, but, Jason, firstly, I want to start with you. You've done a lot of work with bioethics groups in the past. You're very involved with the Greenwald foundation, for example. But how did you approach this publication as somebody who is so steeped in all of those elements that we just discussed?
[00:33:57] Speaker A: Well, obviously, I was quite interested in it. Something by Hastings is typically going to be quite well done, and obviously the topic was quite close to home, and I wasn't disappointed. I enjoyed several of the essays quite a lot, and the one I talked about I found in particular quite well done. Just to reiterate, you know, I really admire how Gary went deep into thinking about the exaggerated narratives that both condemn and promote technology, and then arrived at kind of a key point that I think resonates with me as a clinician and as a human, which is fundamentally, we need to recognize that we all to some degree, are dependent and therefore ought to be interdependent morally and mentally. And that doesn't in any way compromise ourselves to be independent and free politically. And I think that's an important point now in America that we need to resonate. We can be politically independent and free while at the same time recognizing how we are interdependent.
[00:34:50] Speaker B: I admit, while we were listening to that, your audio essay, I could feel my anxiety rising a little bit because we're about 90 minutes away from presenting on how our team has used AI and its work a little bit. And one of the primary lessons that I learned as we were conducting some of that work is how quickly you can lose the humanity in this work. A lot of use of technology can certainly improve the Speed of work or the depth of the work.
[00:35:18] Speaker A: Efficiency.
[00:35:19] Speaker B: Efficiency is the key word. But, boy, I read emails that are clearly written by an AI agent, and I immediately feel a disconnect with the person on the other side.
[00:35:29] Speaker A: Where's the.
Certainly agent of AI and other kinds of AI can make art, but there's something about the human act of two humans creating, which I think is really essential. Which was why you guys picked. Talk about what you guys picked. It was a very narrative based, very story based, very creative based.
[00:35:43] Speaker B: Yeah. Let's turn to you, Jake, first. I mean, that's a natural segue.
[00:35:46] Speaker D: Yeah. Yeah. I chose an essay that was mainly about narratives of dementia in the world and coming up with new narratives of dementia that lead to a more just future for people with dementia and for their caregivers.
And this one was. This one really stood out to me because it felt really relevant to what we do at the age of aging and what we talk about in all of our meetings. You know, what kind of stories are we going to tell? But also, how are we going to tell those stories? Who are we going to center in those stories? We don't want them to be fairy tales and rainbows stories about dementia, but we also don't want them to be like these horror show stories about dementia. There's some kind of truth there in the middle that I think really comes from talking to the people that are living and experiencing dementia every day. And I think that we. I think we mostly accomplish that, you know, to the best of our ability. In talking to, you know, this season, we talked to caregivers in our episode Ambiguous Loss.
[00:36:51] Speaker A: I was thinking of that episode in particular.
[00:36:53] Speaker D: Yeah, I thought that was a really great way. We have two caregivers who have a similar experience, one with her father and one with her husband. But they're also very nuanced and different in their own ways, their own takeaways and experiences.
[00:37:09] Speaker A: I think they revealed how the narrative genre that makes sense of dementia is the genre of what I think as Aristotle called complex tragedies. That's kind of where I'm at. That's what I need to hear more of. Yeah, I agree. Yeah.
[00:37:22] Speaker D: There's an idea in that episode of feeling grief and joy in the same moment in the same day as being just a true experience of living life, but also of experiencing grief.
[00:37:34] Speaker A: What about you, Terry?
[00:37:36] Speaker B: I focused on the creative act of art making in the essay that I had read, and I focused primarily on Anne Basting, who was referenced in the essay simply because of our long relationship. With her. And I'm a great admirer of her work, not just as creating art that directly involves persons living with cognitive impairment, but that she will use it to enact change in a community.
[00:38:00] Speaker A: Yeah. No, I agree with you. I think what I learned from Ann, and remember, I think I've told the story on the age of aging before, was I met her actually years ago, 29 years ago when I was junior faculty at Pennsylvania, and she was just starting this work, and I'm like, what?
People with dementia being creative? And it just was like, no, they can't do that and whatnot. And, you know, I've come a long way because I think, you know, what I find essential to her work and I prescribe in my practice is the role of creative practices.
Sadly, you know, we have this cultural view of, quote, I'm not good at art, I can't draw, et cetera. And yet all of us can create. And. Yeah, that essay was brilliant.
[00:38:39] Speaker B: The first time I met Ann in person, she was giving a talk over at Jefferson, and she talked about the horror she had experienced when she saw a nursing home that was very proud that they were involving the residents in folding of the laundry after it had been cleaned. And then as soon as the residents left, they unfolded everything so the next cohort could come in and fold it again.
And it was busy work. It was an activity, but it was meaningless. It was meant to pass the time instead of absurd. Exactly.
[00:39:12] Speaker A: Yeah. And think about how the staff would think about that, because the staff would be engaged in that just as much. And think about how you would feel if that was your job. What do you do? Well, I fold laundry with persons with dementia. Oh, that sounds. Yeah. And then I unfold it so that the next cohort comes in. We refold it. I mean, I think many of us would personally, if we were doing that, also feel cheapened in our humanity.
[00:39:33] Speaker D: Yeah, it's alienating.
[00:39:34] Speaker A: Yeah, yeah, yeah.
So for this summer, I think we've got some special episodes planned, if I'm not mistaken. Right.
[00:39:40] Speaker B: Yeah. We have a couple of projects that are in the works for the summer, even though we're officially on break, obviously we'll cover.
[00:39:46] Speaker A: We're never on break.
[00:39:47] Speaker B: That's true. Yeah. As far as Apple podcasts is concerned, we're on a break, but in the office, we're busy. Here, we'll revisit the AAIC conference.
[00:39:56] Speaker A: Exactly. My colleagues Dave Volk and Chris Brown and I will come back from London, where the international Alzheimer's meetings will be held this July, and We'll give you our top line summary of what we took away from that and look forward
[00:40:08] Speaker B: and so we've done the AAIC interview a couple of times, but it's always very well received, so we'll keep doing that. But Jake, we also are going to try something new with a special episode this summer. Some content that didn't make it into an episode this season, but not because of its value, but simply because we had so much great content in that episode. Can you tell me a little bit more about what we're expecting there?
[00:40:29] Speaker A: Yeah.
[00:40:29] Speaker D: So not everything makes into the episodes that we release. There are some things that are on the cutting room floor and some really great interviews that I enjoyed conducting. And one of them this season was from the Ambiguous Loss episode. It was an interview with Margot Woodacre, whose husband had died a few years ago, and she talked a lot about mostly the journey from being a caregiver to not being a caregiver anymore post her husband's death. So that interview, it was just such a great interview that it struck me as a story that just needed to be told in its full on its own. So we'll be releasing that as a bonus episode this summer.
[00:41:07] Speaker B: And so we'll be back in September with a bunch of new episodes. We're still figuring out exactly what those stories will be, but we're planning on keeping the same schedule every other Tuesday releasing an episode, and that'll take us through the end of the year. But as always, we do welcome story ideas from our listeners. So if there's anything that we haven't talked about already that you think would be important, please reach out to
[email protected] and we'll have that information in the show notes. All right. Thanks, Jake, for being here today. Thanks, Jason, Terry, great to be here.
[00:41:38] Speaker D: Yeah, great to be here.
[00:41:39] Speaker B: And we'll see you all back in the fall.
Thanks for listening to this episode of the Age of Aging. A special thanks to Holly Elser, Emily Largent, Jake Johnson and Jason Karlewish for their essays and efforts this season.
If this episode or another episode this season has resonated with you, please subscribe, leave us a review or share it with somebody who would appreciate it. This 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 the generous support of the Michael Nadoff Communications Hub Fund and Lena Chow, as well as our sponsor Rothkoff Law Group. Our team includes Morgan Adams, Dalia Elsaid, Jason Karlewish, Emily Largent, and Allison Lynn. I'm your host, Terrence Casey, today, joined by co hosts Jake Johnson and Jason Karle.
