Episode Transcript
[00:00:02] Speaker A: We've added 28 years to life expectancy in the last century. People over 90 are the fastest growing segment of the population, and they're going to quadruple over the next couple of decades.
[00:00:24] Speaker B: Welcome to the Age of Aging, a podcast about living well with an aging brain, produced by the Penn Memory center. I'm Jake Johnson.
[00:00:31] Speaker C: And I'm Terrence Casey. This is the second episode of the Age of Aging. Our first episode, titled Do I want to know? Dealt with genetics and biomarkers and ways that we could determine our risk of developing an age related brain disease such as Alzheimer's disease.
[00:00:47] Speaker B: And in episode two of our podcast, we really wanted to explore what it means to age with a sense of purpose in your everyday life. Each of the four stories today will be about that topic. In our first segment, we talked to a researcher about a new model for care she and colleagues have crafted called supported decision making, which they hope will become a more nuanced and humane alternative to traditional conservatorship. In the second story, we will hear from a researcher who studies the brains of the oldest people in our population and what they can tell us about healthy aging. Our third story covers the artwork of the late Carl Dusan, who crafted his pieces as his Alzheimer's developed. The final story we have today will be about memory cafes, a concept originally developed in the Netherlands and one of the most popular programs offered at the.
[00:01:31] Speaker C: Penn Memory center, but first supported decision making. For more on that, here's our contributor, Megan McCarthy.
[00:01:46] Speaker D: Buzzwords in media right now are guardianship and conservatorship, and if that hits home for you, it's likely because there's been a lot of press surrounding Britney Spears own conservatorship case in recent years. And while that's an important topic of conversation on its own today, I'm here to discuss guardianship in the context of individuals living with Alzheimer's disease or related dementias. When cognition declines, caregivers may enter guardian roles. Patients may lose the capacity to make decisions or care for themselves, and guardianship can be an appropriate next step. But capacity is a spectrum for some patients, decision making capacity may be impacted by their disease, but not totally lost, and the question then remains, how can we support decision making during these in between times?
At PMC, our clinical research team has grappled with this question. Doctor Emily Largin is a bioethicist, and she specializes in ethical issues within Alzheimer's disease research. Recently, doctor Largin and other PMC researchers have published a paper that outlines the concept of supported decision making. This may serve as an alternate option to guardianship. After reading this paper, I sat down with doctor largent to discuss the supported decision making model.
One term that kind of stood out to me was marginal capacity, because that's not a term that, personally I've heard. So I'd love if you could just get into what it means to be someone who has marginal capacity.
[00:03:27] Speaker E: So often when we think about capacity, we divide the world up into two big categories. We talk about people who have capacity. They're walking around, they can make decisions. And then we talk about people who are incapacitated or have inadequate capacity. And those are people that we think really need to have someone else make decisions for them. But the world is a messier place than that. It can't always be divided neatly into those two categories. And so in the middle, we have folks with marginal capacity, and those are individuals who have certain inefficiencies in decision making. So maybe it's a little harder for them to keep all the facts in mind at one time. Maybe they have a little bit of trouble with organizing their thoughts or weighing pros and cons. But it turns out that with the provision of support from another person, that they are able to make their own decisions, and they can make better decisions with that help. So, supported decision making is a process by which somebody who has cognitive impairment finds a trusted other or network of others who can help them make their own decisions. I think the number one benefit is that it prolongs the period where people can make decisions for themselves by just giving them a little bit of assistance to keep making those decisions.
[00:04:41] Speaker D: A little context about why I'm interested in this field. To begin with, my grandfather had dementia. My family was really involved in his caregiving. And so reading, for instance, about practicing this informally, I really understood, because it's not like my family was ever thinking, oh, we're going to do supported decision making. It just was our natural inclination.
[00:05:02] Speaker F: Yeah.
[00:05:02] Speaker E: So I love the example, because as part of our research, we've been talking with patients from the memory center and caregivers about how they make decisions, and it does seem like this kind of support very naturally emerges in relationships. I think a strength of giving it a label is that people are sometimes looking for assurance they're doing the right thing. So when you can say, like, oh, it's not just something you're doing intuitively, but intuitively, you're doing something that we really have reason to think is helpful is great, I think it's also sometimes we have to name things to really appreciate the labor and the work. And I think this builds onto the legal piece of it, which is that families are doing this informally. It's something that you can do without any recourse to the law. In certain states, you're actually able to put together a supported decision making agreement, typically without going to a court. But you can have a form, you fill it out, and then what you can do is you can give it to third parties, you can give it to your doctor, you could give it to a lawyer you were working with, you could take it to your bank. The value of supported decision making in terms of respecting people's rights is only insofar as others are willing to recognize the decision making. And so having it recognized by law will really expand the areas where people can continue to make their own decisions.
[00:06:14] Speaker D: I was also fascinated when you spoke about having a network of supporters and the importance of that. I'd love for you to just touch on why that's important and what it means to have a network of supporters.
[00:06:26] Speaker E: So when we think about the kinds of decisions that supported decision making often anticipates, right. It might be, where am I going to live? It might be, what kind of medical care am I going to seek? For some people, it might be, should I stay employed, or do I want to leave my job? And we can, I think, all look at our own lives and think about advice we might get from friends. And the person you want advice from about your finances might be somebody different than the person you want advice from about your healthcare decision making. And so what the network does is it's another way of this personalizing it, because it says, you know what? I'm going to bring in people who I think are best suited to help me make good decisions for me, and they can offer that kind of support. Another benefit of having a network of people is that you can have multiple perspectives, and there's some good evidence that people make better decisions when they have more perspectives. And the other thing that can happen, and we just have to be aware of this as an unfortunate consequence, is that, you know, sometimes people try to take advantage of people who have cognitive impairment. And having a network of supporters is an opportunity to provide checks and balances on those others, because one person might see somebody else and be a little worried and step in. And so it also can be protective of the individual to have more than one person.
[00:07:42] Speaker D: I imagine that this is fluid, and that someone could have an agreement, and then that may not be appropriate in a year or two, and I'd love for you to touch on the process of that and who kind of determines that.
[00:07:56] Speaker E: So I love that question. It's something that we're grappling with in our own work. To date, supported decision making has often been used in people who have static impairments. So people who were perhaps have an intellectual or developmental disability and so have had it their whole life, and they have fairly constant level of functioning. And we are very interested in using this for older adults who might have neurodegenerative diseases. So their cognition and function are changing over time. And I do think that there will be a time when people it needs to continue to evolve. So at least initially, I think the supported decision making agreement can evolve to reflect the greater level of supports. And we do think this is a place where clinicians can be really helpful in their ongoing assessments of a patient. They can point out when they think that perhaps it's gone on to a place where it's no longer the most beneficial for the individual to have supported decision making. We really don't think that it's about involving the patient up until the point where supported decision making doesn't work, and then they're not involved anymore. Because even somebody where supported decision making isn't appropriate may very well be able to express their preferences, their values. They might still want to have information and be involved. And so there are ways where somebody else might need to make the final decision, but the individual can be involved in those decisions in an ongoing fashion and I think should be involved, right? We still want to have people's views, even if they can't ultimately be the one who makes the decision.
[00:09:25] Speaker D: It was so informative to sit down with doctor largent at PMC. She is collaborating with several other research leaders to continue to develop this model and really pursue ongoing work. If you are interested in learning more about supported decision making, you can go onto our website at www.penmemorycenter.org and search supported decision making. In our search bar, we have a dedicated page with videos and graphics about supported decision making, and we also have compiled a list of all of our written articles on the topic. If you're interested in learning about the legality of supported decision making, the American Civil Liberties Union or the ACLU is a great place to start. And of course you can always email our team with additional questions.
[00:10:20] Speaker C: So I'll say that when it gets to supported decision making, this is obviously a complex and serious topic, but I always have to laugh a little bit when we use Britney Spears as an example simply because of the diversity of ages, especially on our communications team.
I am of the age that I now have gray in my beard and can fondly recall once opening a brand new Britney Spears CD at home. I'm guessing you probably didn't have that same experience.
[00:10:51] Speaker B: I did not. No, no, I did not.
[00:10:55] Speaker C: Yeah, that's fine. We don't have to go on that any longer.
But the second thing I always think about with supported decision making is how much of what we talk about, when you boil it down to its most basic elements, is common sense community.
In a lot of ways, that's what a lot of caregiving boils down to, that the best caregiving is one where you are supported by a family and a network. I think about my circle of friends. We constantly joke about the boxes that we've checked off with each other's professions, and we know who as we get older, we can go to for legal advice or medical advice and so on. And some of that seems built into supported decision making. And as people who work with words, I appreciated doctor Largent's perspective that sometimes just naming something gives it value. But I think the key is then making sure that other people are respecting these agreements, particularly in legal and clinical fields.
[00:11:52] Speaker B: I think it can sound complicated when you get into the weeds of it, like how is this going to work? I think what you said is really true. And one of my favorite things that doctor Largen talks about is making something that families naturally develop into law and giving it a name and giving it more legality and standing, because the people that are going to know best about the situation are those that are in it. And I think the conservatorship binary makes it seem easier in some ways because it's either you have conservatorship or you don't. But I think when it starts to translate into the real world, actually supported decision making is going to seem like it just fits a lot better with what people are actually doing.
[00:12:37] Speaker C: Yeah. And so the next stage for supported decision making is going to be greater acceptance in the medical and legal communities. We heard Doctor Largin talk about that. And in fact, one of those steps has taken place since Meg had originally recorded this interview with Doctor Largine. In fact, just this week, as were recording, it received a notice from the advisory council on elder justice in the courts and the office of Elder justice in the courts. And they just announced the publication of the Pennsylvania Guardian Handbook. This is a resource for family and lay guardians. Its available online. Well put it in the show notes too. But right there on page three, when theyre talking about different examples of guardianship, is supported decision making. Thanks to doctor Largin and her colleagues taking this work out of just the research space and out into the professional space, we're starting to see some impact of supported decision making.
[00:13:31] Speaker B: So, as we mentioned, talking about supported decision making, when you're getting into these later years, the level of support you need is going to vary from person to person. In this next story, contributor Kate Kearney talked to a researcher who studies the oldest people in our population in order to understand what lifestyle and neurological differences might set them apart from the rest of us.
[00:13:55] Speaker A: The oldest old have a whole lot to teach us in so many domains. My name is Claudia Kawas. I'm a neurologist, and I'm interested in aging and dementia, and in particular the oldest old people over the age of 90.
[00:14:11] Speaker G: This is Claudia Kawas, and she's interested in what the oldest people in our population can teach us about aging, health, and living a long life.
[00:14:20] Speaker A: We have Social Security at age 65 because when it was established, people didn't live past 65.
We've added 28 years to life expectancy in the last century. People over 90 are the fastest growing segment of the population, and they're going to quadruple over the next couple of decades.
[00:14:40] Speaker G: And the UN projects that by 2060, the current oldest old population will increase five fold to 113 million people. By studying the attitudes, daily habits, and health of this growing population, we can learn what lifestyles lead to long, healthy lives. So what's the secret to living a long life?
[00:15:02] Speaker A: Some of the first studies we did were in longevity. It turns out that individuals who exercise live longer. Individuals who do activities that are non exercise live longer than people who don't. For every hour that individuals were engaging in cognitive or social activities, they had a benefit for longevity.
[00:15:25] Speaker G: Not only do Doctor Kawas and her colleagues study the oldest old through assessments and surveys during life, they also study the oldest old through brain donation and autopsy.
[00:15:37] Speaker A: My favorite parts of this research has been the autopsy studies that we have done, did many of our autopsy studies in collaboration with the University of Pennsylvania. And I think that what we're finding in their brains is telling us a lot about brain health at all ages and is some of the richest material that we have.
[00:15:57] Speaker G: And what Doctor Kawas discovered in these people's brains is truly astounding.
[00:16:02] Speaker A: I think one of the things that stunned people the most is the realization that probably about 40% of individuals in this age group who die without dementia in fact have significant amounts of disease in their brain, including Alzheimer's disease, and yet they seem to be relatively fine. If we can figure out why they're not expressing dementia, then I think we can get strategies that'll help all of us. And at younger ages, what Doctor Kawas.
[00:16:32] Speaker G: Said really struck her about studying the oldest old. And what also really stands out to me is that a common characteristic of the oldest old is that they feel a sense of purpose in their lives.
[00:16:42] Speaker A: And that continues right up to when we see them in their 9th and 10th decades. They are volunteering for this incredibly strenuous research. The desire to make the world a better place and leave a legacy has been so striking.
[00:17:04] Speaker C: We really could have gone two different directions with this story. On the one side, you have this exploding population of the oldest, oldest, she calls them, and part of that can be really exciting. We're talking about people living longer. This is inherently a good thing. Sure. However, you could also look at sort of the financial implications and how are we as a country getting ready to take care of all of these older adults? How are our health systems getting ready to care for them? How are families preparing to care for them? And that could be a pretty challenging piece to talk about, and we may need to revisit that in the future. But since this was an episode about living well as we age, we really chose to focus on, quote, the secret to aging well. And this is something that when we have our outreach work, we hear all the time. It's how do I avoid getting dementia as I get older? And how do I live longer? And it was reassuring to hear that her advice was essentially the same as ours, which is keep yourself physically, cognitively, and socially active. And since our team also focuses on research recruitment, I personally appreciated her shout out that volunteering for research, however strenuous, can offer a sense of purpose to these superagers, if you will. So thank you for that marketing tip there.
[00:18:30] Speaker B: It's very cool to hear about how much brain domination can benefit researchers in understanding these diseases. And we have MRI imaging and we have PET scans, but researchers don't understand what's going on in the brain completely until they can actually look at a physical brain. So donating your brain to science is like a huge way you can contribute to this research. And I think that really ties nicely into our next story about someone who found a creative passion even as his dementia from Alzheimer's disease progressed. For more on that, here's Terrence.
[00:19:08] Speaker H: I first heard about Carl Dusin in 2016 when he was interviewed by one of my favorite podcasts this american life.
The episode was a four part show titled it'll make sense when you're older, and his segment was the concluding story.
What Carl was trying to make sense of was why he, with his graduate degree in physics, could no longer draw a simple clock during a doctor's visit.
Carl, a longtime science teacher, had been diagnosed with Alzheimer's disease at the Penn Memory center, where I had only recently started working.
And so he broke the problem down. An analog clock had what he described as a superposition of three parts. Theres the round face, the numbers one through twelve marking the hour, noted by a shorter, wider hand, and then those same numbers as stand ins for the digit multiplied by five, marking the minute, noted by a longer, skinnier hand. In the episode, he looks at a watch, identify these superpositions, counts by five, and after about a minute announces 140.
Carl could still read the time, but he had to break it apart to understand what he was really looking at.
A year later I heard of Carl again, specifically regarding a unique behavior identified during a clinical visit.
Carl had been disassembling old cathode ray tube tvs, you know the ones that are about two or 3ft deep. And he was pulling out the copper wire wrapping or folding them into tidy piles.
It kept him busy and satisfied his intellectual curiosity. And so neither his wife nor clinical care team were all that concerned by the behavior.
But then his wife Susan, an artist and former art educator, noticed something special.
The tidy piles were actually quite lovely.
Some resembled piles of bracelets or birds nests or a bouquet of flowers.
And once she began framing the pieces, the surrounding community also found the works compelling.
That summer, editorial assistant Chloe Elmer interviewed Karl and Susan at their home to discuss the process.
We'll play that audio for you now.
[00:21:41] Speaker F: Well I knew something about, about them and so there's something to do. Take it apart, nobody wants it.
So you have to find out that it's exactly exists first and then you go back and say, oh, now what am I going to do with it?
Carl had been complaining, he's been complaining for years about his memory and I guess I didn't think there was anything that different. But we got an appointment with Doctor Brusa and when he got to the bottom of the page where it said memory problems he just turned the page and I sort of said, aren't you going to say anything about memory problems? And do you remember you said, oh ha ha, I forgot.
Did I get it right?
Well tell me again.
Carl said very clearly to me after that diagnosis, I just want to put 1ft in front or the other. I just want to. This is the. So this is the path I'm on, okay. I'm not ashamed of it. And you've worked hard to come up with things that challenge your mind and that are also pleasing for you to do.
Pretty soon I was telling people about, well, Carl's taking apart electronics, if you have any old thing, and that's right. Gradually stuff Washington, he was taking it apart and organizing it in the basement so that one Ziploc bag would have a bunch of one kind and another. And one day I happened to be passing through and I saw that in order to get the copper out of whatever it was he had accessed, he'd had to cut the copper into little short pieces. And he kind of bundled them together and they were lined up because Carl's an organized guy and they were lined up there on the. On the counter. And suddenly it just struck me how really beautiful it was and decided that people would see it as beautiful if you put a frame around it, because that's how we designate art. So I went out and got a frame, and the next thing I knew, Carl was bringing me things because he himself was seeing the beauty which he'd been doing all along. But suddenly we both kind of had this different notion.
Every person has Alzheimer's in a different way. That's one of the things I've learned. It manifests differently in every single person. And every family is a different dynamic. Carl's a big advocate of just stand up and stand tall and move forward and don't give up. Right? Yeah. Because you've said to me, I don't want to give up.
[00:24:29] Speaker C: After this interview, Carl's work went on.
[00:24:31] Speaker H: Display first at the Penn Memory center clinic and then at the Mainline Arts Center.
Carl and Susan were then featured in a really powerful short documentary by filmmaker Mike addy titled moment to moment.
Links to more information are in our show notes.
Carl Dusan died in April of 2020 at the age of 83.
His story, however, lives on as an inspiration to families at the Penn Memory center and beyond.
[00:25:07] Speaker B: I find that story really moving, particularly the part where Carl and his wife are talking and she was explaining that Carl's kind of view of his own disease was that he was going to keep putting 1ft in front of the other and doing things that were stimulating to him and interesting to him. And I don't know if he had a creative background before this, but it seemed like this was a new experience for him, taking apart these things and doing this kind of project. I love that he just embraced it and embraced that this was something that was pleasing for him to do. And because he did that, it became something so much more.
[00:25:46] Speaker C: I thought a lot about during this piece, what we referred to in our lab and across the center as the extended mind, and the idea that when someone is living with cognitive impairment, they require these tools to help them get through everyday life, to sort of expand their mind and define themselves more. And in persons living with cognitive impairment, perhaps that's no clearer than with a caregiver, and particularly a caregiver that knows you as well as a longtime spouse. And I thought about who Carl was in most of his adult life and then who Carl was late in his adult life and what that extended mind looks like with the aid of his wife, Susan, that Carl was this organized scientist who really was interested in taking apart televisions and seeing a complicated product reduced to parts. But when you add in his wife's perspective, now you have this organized scientist become an artist. And I found that so appealing on a human level, just seeing how he developed over time, but then how much his work was embraced by both the scientific and artistic communities alike. It was really interesting to see scientists out of lab coats and artists out of their smocks, gathering at his gallery exhibition to study both the beauty of his work and the meaning behind him deciding to create it.
[00:27:22] Speaker B: So did you actually meet Carl?
[00:27:24] Speaker C: Yeah, many times. When we put his art on display at the Perelman center for Advanced Medicine, where our clinic is, we held a gathering there and welcomed Carl and Susan. But even separately from that, Carl and Susan were very active in Penn memory center programs. And so I had seen them a number of times over the years, had a few conversations, and have kept in touch with Susan. This story, we talked about it being a lasting memory, and I don't think six months has gone by since we did this that I haven't heard from one of Susan's old students who wanted to reach out because she heard of this story. Once again, truly, between our story and the film that was made out of it and the artwork that was created, this is a story that is going to live on for a long time. Carl and Susan were frequent visitors at Penn Memory center social support programs, but perhaps none as much as our monthly memory cafes. These memory cafes are a true highlight of our social support programs, a free opportunity for persons living with cognitive impairment to gather in a safe social space with their loved ones and their peers. They're one of the most popular offerings from the Penn memory center. And so we couldn't tell stories of aging well without talking about the memory cafe.
And so to help tell that story, Jake went to a recent memory cafe.
[00:29:12] Speaker B: Beautiful singing you're hearing is from the Quaker notes, an all female identifying a cappella group at the University of Pennsylvania. This performance I went to a few months back in November was a part of the Penn Memory Center's Memory Cafe program, which plans performances, classes, and events for people with cognitive impairment and their caregivers.
Memory cafes were actually first introduced as a concept in the Netherlands in 1997 by dutch psychologist Birmesen as a way to break the stigma around dementia and memory loss. Memory cafes were envisioned as a safe space where patients and caregivers could gather without the fear of being judged or being disruptive and enjoy themselves. Today, memory cafes are one of the most popular programs that PMC runs.
This was my first memory cafe, and one of the things that immediately stood out to me was just the general atmosphere of the event. As people, mostly couples, rolled in, there was this friendly, warm energy. I was feeling nervous about interrupting people by sticking a microphone in their face and asking them questions. When someone actually approached me. She asked me how I was involved at the memory center, and I told her I was doing a podcast story on the memory cafe. I learned her name was Louise and that she and her husband started coming when he developed mild cognitive impairment.
[00:30:29] Speaker A: This is wonderful.
[00:30:31] Speaker I: My husband used to love them. He was able to come by himself. I didn't used to come with him, even.
[00:30:38] Speaker B: Meg Kalofsky is the associate director of social programs at PMC.
[00:30:43] Speaker J: My objective when I create a memory cafe is to have a really warm, open, community oriented space. We definitely have people who come to our memory cafes who sometimes have no cognitive challenges at all. But I see that as a real benefit because being able to be around older adults who do have memory changes, it kind of destigmatizes and demystifies what this looks like and what that will be like and really allows for people to, quote unquote, feel normal, which I do think, you know, creating these normalized spaces does a lot in terms of someone's self esteem.
[00:31:16] Speaker B: The memory cafe I attended was held at the Christchurch neighborhood house. The area before you enter the performance space is filled with some tea, coffee, and boxes of food, which people peruse for a bit before sitting down for the performance.
[00:31:30] Speaker J: The first 30 ish minutes of each memory cafe is a time to kind of connect, chat, have some coffee, have some snacks, really be able to engage with the other attendees. And then the eleven to 12:00 hour is when our presenter is sharing their information.
[00:31:46] Speaker B: I shuffled into the concert space and sat down with a few groups to talk about how they felt about the memory cafes. Everyone I spoke to echoed the sense of community they felt coming to the events and the ease they felt knowing that everyone was having similar experiences to them.
Marjorie Snelling, who originally began coming with her husband, still comes to memory cafes by herself or with a friend.
[00:32:09] Speaker C: They're designed to be suitable for people with memory loss, so they're in the daytime. Music always resonates. They're short. You know, it's an hour, so it's not really long. The people, the other people here are lovely and in the same boat, so you're not worried about behaviors as much as you can be. So it's an extremely upbeat, close by, accessible thing.
[00:32:36] Speaker B: Every person I spoke to said they participated in at least one other program at Penn. But what seemed to set memory cafes apart was that dementia, memory loss, and caregiving were not their primary focus. Instead, memory cafes make events you might find in any other major city more accessible. For people in those groups, what's equal.
[00:32:55] Speaker J: Is we all, in theory, have access to the same items. But for someone with dementia, it would be really hard to go to, like a classical music concert and sit through the whole thing. You know, it might be an hour and a half. Being able to stay concentrated, maybe have some behavioral elements pop up, or just needing to be able to get up and quickly use the restroom. What quickly goes to equal access is not actually equal access, right? So being able to center some of their needs.
[00:33:25] Speaker B: I thought the way that Meg explained this was a really interesting way to look at memory cafes and programming for differently abled people in general, equity and access for those with dementia and cognitive impairment actually meant catering to their specific needs. And this can come in many different forms. At the Acapella show I attended, Meg gave the example of the performers singing older songs from Elvis and the Beatles, where they might sing more modern songs at their standard performances.
They even encouraged people to sing along if they knew the lyrics, something that probably wouldn't be acceptable at other acapella shows.
[00:33:59] Speaker J: It just creates a space that's comfortable and designed for them, as opposed to just trying to, like, fit into this box of acceptable behavior that we all, for big things like this, kind of put ourselves into.
[00:34:11] Speaker B: Music in particular, really seemed to resonate with the people I speak.
This is Debbie Feldman, who attended with her husband.
[00:34:18] Speaker E: I'm excited. I haven't seen this group perform.
[00:34:21] Speaker B: I was just saying I saw them.
[00:34:22] Speaker A: At a warmit 20 years ago and they were fabulous.
[00:34:25] Speaker E: It's different students, I know, but it's.
[00:34:27] Speaker B: Really a great group.
[00:34:29] Speaker A: Any music program is fabulous. Music is really great for most people with memory issues and it's really relaxing.
[00:34:37] Speaker B: Of course, one of the best parts of the memory cafes is the variety of the events. In addition to making sure crowd favorites are in the schedule, Meg works hard to come up with fresh ideas and bring in new presenters.
[00:34:48] Speaker J: Three of my favorites that I just thought were really interesting. We did a bird walking tour in Fairmount park and that was super cool. It's a space that I've enjoyed before, but it was just really so interesting to do it from a birdwatching perspective. We did a creative writing workshop last year that I thought was awesome. Really neat. The presenter is a creative writing professor at Penn and she brought music and she brought different things of strong smell, so like cloves and different dried herbs and stuff like that to smell. And then they did some creative writing using these different senses to help come up with these creative words or thoughts or phrases. And I thought that one was really interesting and unique. This upcoming semester we're going to have some musical presentations. We're going to have the Muter museum come in and do another presentation for us. And then we have a new presentation that we've never done before. It's being called meditation with clay and it's kind of creating pinch pots, not for the purpose of creating a piece of art, but more for the meditative process of molding the clay and experiencing what it feels like from a meditative perspective to really be engaging with these elements.
[00:36:10] Speaker B: For all the interesting kinds of presentations and activities the memory cafes provide. The part that really stands out to me is that it's all completely free.
[00:36:18] Speaker J: It's totally free. We obviously have to pay for elements of it from the pen perspective, and that's supported through grants and philanthropic donations. But we don't charge any participants because there's enough barriers out there and we have community partners who support us, such as, you know, Christchurch neighborhood house. Being able to allow us to use their space, that's been a huge asset. We have many groups within the community who are willing to give us their services for a reduced rate, which allows us to be able to really pass along this joy for our community.
[00:36:52] Speaker B: The show itself was very nice. I thought the Quaker notes did a great job and the audience seemed to enjoy it as well. There was enthusiastic applause and excited murmurings in between each song. Some people sang along, but for the most part people just quietly listened. It was a very relaxing way to spend a Friday afternoon.
After the performance, there was a q and A, which was another kind of interaction that Meg spoke about where people of different generations got to interact in a way they might not normally.
[00:37:21] Speaker I: What are you all studying?
[00:37:24] Speaker B: Yeah, I guess we can go around for that. So I'm studying biology.
[00:37:29] Speaker C: I'm studying business.
[00:37:30] Speaker B: I'm studying finance and business analytics. I'm also studying business and I'm studying political science.
And a few minutes later, the show wrapped up and people started getting ready to leave. After taking a few pictures of the performance space, I got to speak with one more person.
[00:37:48] Speaker I: Joanne Beam. Like a sunbeam.
[00:37:51] Speaker B: So what do you like about the memory cafes that keeps you coming back?
[00:37:56] Speaker I: I just think they're very varied, so there's sure to be something for everybody in the course of a season. You know, not everybody's into art, but I even tried it. And not everybody's into dancing, but everybody tried it. But it also is not as much this one, but most of the others are opportunities for caregivers to interact with other caregivers, and patients to interact with other patients. Bill met a really great guy. They hit it off really well, the two of them. They were kind of pals, and his wife and I palled also. So that sort of socialization, I think, is really wonderful.
[00:38:35] Speaker B: So what does it mean to have, like, programs like this available?
[00:38:39] Speaker I: It's like. It's like heaven. It's just I feel so supported. I feel so as though I'm not alone and Bill is not alone in our trajectory together.
[00:39:15] Speaker C: I love the memory cafes. They have been such an integral part of the Penn memory Center and the experience of working here over the better part of a decade. And I actually didn't get to go to any of the ones that Meg had mentioned. But some favorites of mine over the years have been having the Philadelphia Zoo come in and bring some animals and then ones that I never would have thought, including we had one research participant who came in and showed off his collection of masks from around the world. And this was something that I was second guessing until we saw it in person and thought, all right, I get it now. This is very cool. And it was a great way to really build the community in this space. One thing I thought about a lot over the course of this goes back to our initial story about supported decision making, about how this is a fabulous idea with fabulous execution that shouldn't be necessary. And what I would love to see is the memory cafe exist in a space that you don't need the memory center for that. The problems that are solved by having a memory cafe, having a safe social space for older adults who may or may not have cognitive impairment, seeing that integrated into society more. I'd love to see that at my local coffee shop or some other third space in a community. And I think that's when we're really starting to get somewhere in terms of aging.
[00:40:46] Speaker B: Well, yeah, I love doing the story. I mean, I love listening to the a cappella. I actually went to a memory cafe recently, again, to cover it, and I was just taking pictures, and it was a merengue class, and it was so much fun. And I talked to one of the teachers and she was like, do you want to come to one of my classes? And I was like, sure. And I signed up for a dance class, and I went the other day and it was great. I think it is just making things more accessible, something that's already very cool and interesting, more of a safe space. And I said in the original story that just the atmosphere is really nice at these memory cafes. You can really feel that everybody there feels very comfortable. They're doing things that are out of their comfort zone, like in this dance class. But there's not a sense of embarrassment or shame. It's very accepting and very warm. And everybody there is there because of very similar reasons. A sense of community and learning something new and doing something interesting on a Friday afternoon. And I do really appreciate hearing all these stories today because I think they highlight programs and ways that people can enhance their quality of life as they age and maintain their independence as long as possible.
[00:42:09] Speaker C: Thanks for listening to this episode of the age of aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD center.
[00:42:22] Speaker B: Contributors include myself and Terence Casey, as well as Nicolette Kalkoveckia, marine engineering Jason Carlowish, Kate Kearney, Emily Largent, Meg McCarthy, and Olivia Vizzella.
[00:42:35] Speaker C: More information on the stories you heard today can be found in our show notes and on penmemorycenter.org.
