Just Aging

[00:00:02] Speaker A: Instead of going in and saying, oh, my God, this place is a mess, let's clean it up, or oh, you must be so bummed that your kid is, you know, gone off the rails or is abusing you. Go in and say what's important to you. Like, how do you make meaning of your life and how can I help? And that, I think, makes all the difference. [00:00:34] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain. Recorded in the Michael Nadoff communications hub at the Penn Memory Center. I'm Terence Casey. [00:00:44] Speaker C: And I'm Jake Johnson. Welcome to season four. [00:00:48] Speaker B: Well, welcome back, Jake. How was your summer? [00:00:50] Speaker C: Summer was good. It was, it was pretty eventful. I did this trip to Italy, which was really fun. I had never been to Rome before and it was very hot. It was very crowded with tourists and very few Italians, but that's what we expected. So I had a great time. But I'm glad to be back in Philadelphia. It's a little less hot, which is actually kind of unusual for this time of year. Good to be back to work on the, on the next season. How was your summer? [00:01:22] Speaker B: That was nice. We did not travel over international waters, but had some time in the mountains and at the beach. It's, we have a pretty standard routine there, but it's hard to complain about getting, getting those two vacations in every summer. But you said we're back and that's true. We're back with season four, but we're also back in our old stomping grounds of our old pen Memory center office at ralston House at 36 and Chestnut. And it's good to be back in here. After some renovation to the space, we're not quite done. We have a dedicated studio space and we'll, we'll have some more details about that as we advance in this season and we'll, we'll share some pictures. We have some great ideas for the design of the space and of course, some of the soundproofing and little higher quality equipment than we've been using with just our laptops and headphones up till now. But speaking of this upcoming season, what are you most looking forward to? What can people expect out of season four of the Age of Aging? [00:02:26] Speaker C: Yeah, I mean, it's going to be really fun. We're getting professional now with season four and I'm excited about it with the new studio. In terms of stories, we have another great variety of stories, a lot of them having to do with art that I'm excited about. One of the stories will be about a play centered around FTD or frontotemporal degeneration. I'll be actually flying out to the west coast to attend the premiere for that and talk to a bunch of experts and creators of the show. So super thrilled about that. We're going to talk about dogs and dementia, which I'm very excited about. I have a dog myself, and how animals can be great companions as you get older and experience brain change. So those are a few of the ones that I'm looking forward to. What about you? [00:03:21] Speaker B: I know we haven't fully cemented what we're going to have in the episode yet, but we're planning an episode on AI and aging, and there are. [00:03:32] Speaker D: A. [00:03:32] Speaker B: Lot of different projects in this space people are looking at, from everything about aging in place to biomarker measurement to product development in the pharmaceutical space. But I'm also looking forward to today's topic. I think we're going to talk about some elder law, elder justice. What can we expect in today? Today's show? [00:03:53] Speaker C: Well, today's episode is all about elder law and elder justice and what exactly those two things are. Contributor on the podcast and expert herself in this field, Dr. Emily Largent conducted two of the interviews you're going to hear today, both with giants in this space. The first is MT Connelly, who is a lawyer, elder justice advocate, and author of the book the Measure of Our Navigating Care, Safety, Money, and Meaning later in Life. And the second interview that Dr. Largent conducted was with Charlie Sabatino, who is an elder law attorney and served as the director of the American Bar Association's Commission on Law and Aging for 37 years. So one of the most knowledgeable people that you could talk to about elder law. And then I sat down with Judge Lois Murphy, who is a judge of the Court of Common Pleas in Pennsylvania, where she sees cases related to guardianship and is also the chair of the Pennsylvania Supreme Court's Advisory Council on Elder Justice Issues. So we have some pretty incredible guests for this episode, in addition to an expert interviewer. So I think people are really going to learn a lot from this one. [00:05:07] Speaker B: Well, I can't wait to hear it. But first, a word from our sponsor, the TIAA Institute. [00:05:14] Speaker C: Understanding longevity can better prepare individuals to make thoughtful decisions not only about their. [00:05:20] Speaker A: Finances, but about their health and lifestyle, too. Matching lifespan with healthspan and pairing both with financial readiness has become a defining challenge. The TIAA Institute wants to help build longevity literacy to better support outcomes for all. [00:05:48] Speaker C: According to the center for disease control, in 1900 the average life expectancy in the US was around 47 years old, with around 30% of infants not making it to their first birthday. By 1950, average life expectancy had jumped 20 years to around 68 years old. Fifteen years later, Medicare was signed into law by President Lyndon B. Johnson for those 65 and older, with the average life expectancy just five years greater at 70 years old. And in 2023, the average life expectancy in the US was 78.4 years old, with trends showing that number continuing to grow in the next 75 years. Greater life expectancy can almost certainly be attributed to massive advancements in modern medicine throughout the 20th century, as well as increased access to health care, higher levels of education, and improved standards of living. But while increased life expectancy is undoubtedly a good thing, old age comes with a variety of different challenges, including increased risk for both cognitive impairment and physical disability. And while all of us want to live as long as possible, we think a lot less about the reality of being older. [00:07:04] Speaker A: We want to get old, but we don't want to be old. And I think that's really problematic as a culture. [00:07:11] Speaker C: This is Murray Trace Connolly or MT Connolly, a leading advocate for elder justice and author of the book the Measure of Our Navigating Care, Safety, Money, and Meaning later in Life. Her work looks at the challenges older adults face in the US and how we might build systems that better support them. Member of the podcast team and an associate professor of medical ethics at the University of Pennsylvania, Dr. Emily Largent, conducted this interview with Connelly. [00:07:40] Speaker D: So we have, on the one hand, this idea that we venerate our elders. We think about older adults being worthy of our respect, but yet we do have this means of isolating. We have ageist assumptions. What do you think drives this tension in how we perceive older adults? [00:07:58] Speaker A: I think a lot of it is fear. People are, in general, I think, more scared of decline and being a burden and loss of independence even than they are of dying. And we don't do a good job of talking about it. We've begun talking more about death, I think, but we don't really talk about what it means to have physical and cognitive decline and how we can live very full lives notwithstanding those kinds of declines. And so instead it just inhabits this place of fear and horror in our brains, and so we block it out. So we don't think about it, so we don't talk about it, so we don't prepare for it. And that happens, I think, as individuals, in our families, in our communities, and as a society. So all of us suffer really because we can't face it. [00:08:48] Speaker C: Connolly said that in addition to a cultural denial, our lack of attention on old age also represents a systematic failure to support older adults in the US Nearly as much as we should. [00:09:00] Speaker A: I mean, Social Security and Medicare are huge, of course, but so is long term care. And Medicare doesn't cover long term care. It's a luxury item in our society, which is kind of outrageous when you think about how many people actually need long term care and how expensive it is and how many families it impoverishes. I had a friend who said that caring for Zabuela, who had dementia, took down three generations of women in his family, right lost jobs, lost relationships, lost opportunities for education, all kinds of stuff. [00:09:32] Speaker C: In addition to more and more people living past 65, the general population has also become more spread out across the country, with traditional caregivers such as women working more and living more independently. [00:09:45] Speaker E: The demographics of our country are much more mobile than we used to be. [00:09:49] Speaker C: Charlie Sabatino is an elder law attorney currently practicing as a consultant in law and Aging. For 37 years, he served as the director of the American Bar Association's Commission on Law and Aging. [00:10:02] Speaker E: So family members are all centered around you in your local community, there, across the country, across the globe, and the lack of immediate caregivers is a huge crisis for our older population in general. [00:10:17] Speaker C: Elder law attorneys specialize in the many challenges that arise with aging. Lawyers like Sabatino help older adults and their families plan for old age, which usually involves managing finances, property and possible disability. Beyond that, though, there's a vast array of issues in aging that elder law attorneys focus on. [00:10:37] Speaker E: When you think of law and aging, it covers everything from, you know, age discrimination and employment to the usual kinds of financial issues that most people face, particularly financial scams and exploitation. The elderly are ripe for that, but the core of it is trying to preserve one's autonomy and decision making abilities and if that can't be preserved, to making sure that their wishes and preferences and goals are known ahead of time so the surge can really continue helping them live as they would want to live. [00:11:12] Speaker C: Autonomy and how to preserve it for as long as possible is one of the biggest topics in elder law. Sabatino recommends older adults meet with an elder law attorney at age 65, even if they're healthy, he said. Each state also provides its own state health insurance assistance programs or ships where you can get free Medicare counseling for those who are lower to middle income, Sabatino said affording a lawyer can be Costly. But to check with your local agency on aging to see if you qualify for assistance. [00:11:44] Speaker E: It is tougher for people who are kind of lower middle income, where the expense of a lawyer is very difficult. But they do have assets, they do have some income. It's always worth checking with one's local area agency and aging to find out what legal resources there are, because many programs have pro bono appendages to their program that will will do pro bono work for people of certain income levels and what those income levels are can vary from place to place. [00:12:13] Speaker C: Expressing your wishes for the future, appointing powers of attorney, and generally getting your affairs in order is your best chance at maintaining autonomy and preventing crisis further down the road. Judge Lois Murphy is very familiar with the kinds of crises that occur when this planning isn't done. [00:12:31] Speaker D: My name is Lois Murphy. I'm a judge of the Court of Common Pleas, which is what we call the state trial court in Pennsylvania. And I'm assigned to a division that hears guardianships, among other matters. [00:12:44] Speaker C: Guardianship is the main way the US legal system deals with cases of cognitive decline and disability. When a petition for guardianship is brought to the courts, a medical expert must make the case that a person's mental capacity is diminished enough that they need someone to make decisions for them. The court can grant a limited guardianship over one aspect of a person's life, or a plenary guardianship, essentially allowing one person to make all legal, financial and healthcare decisions for the person with less incapacity. [00:13:15] Speaker D: Guardianship gives people a lot of power. The guardian can manage all of your financial decisions, all of your financial assets, and all of your personal decisions, and make medical decisions for you. So it's a huge broad array of powers, which is a really big deprivation of rights to the individual. [00:13:32] Speaker C: Judge Murphy gave an example of one of the many guardianship cases that she sees involving families. [00:13:38] Speaker D: So I had a case a number of years ago. A woman who was elderly was beginning to have dementia, and she had some delusions as well and some paranoia. She wouldn't go to the doctor. She lived alone. She was a widow. She had 10 adult children, and her children were very involved. One of her children, her oldest daughter, wanted to take her to the doctor and she wouldn't go. And there were some other issues as well, but with the delusions, refusal to go to the doctor, daughter filed for guardianship. Mom did not have powers of attorney. She hadn't done any advance planning. Initially, the family was very divided about whether a guardianship was needed, and some of the children thought this was Offensive to suggest that she needed a guardian. So there were hurt feelings. One of the children took her to his home in the Pittsburgh area to live with him for a while. Thought he could solve the problem. But then she began to wander. He was persuaded she needed a guardian, but he didn't want the oldest sister to be the guardian. When we had the hearing in court, I heard from everybody in the family just about. And towards the end of the day, mom was being examined and answering some questions, and she was asked because she could still express her preferences and opinions on things, well, who do you think should be in charge and help you with your affairs? And she said, well, I think John should be because he's my favorite. And at that point, and this was really fortunate, everybody in the room smiled and started laughing. And one of the daughters, you know, declared from the back of the room, mom, you just said, john's your favorite on the court record, in public, you know, but. But they all laughed. And I think it brought everybody together that they were all really pulling in the same direction, wanting what was best for mom, wanting to take care of her, wanting to help her. And they did need at least one of the siblings to have some authority to make some financial and other decisions and help her get to the doctor and help make medical decisions for her. So I decided to honor mom's wishes to some extent and John, who was the youngest and apparently was her favorite. I named John as a co guardian with the oldest sister, Barbara, who had brought the petition, because I did conclude that Barbara had her best interests at heart and she wasn't trying to steamroll anybody. But I thought the two of them acting together would keep everybody on the same page and make sure Mom's wishes were taken into account. [00:15:58] Speaker C: Guardianship is a controversial topic in the space of elder rights and disability. Many believe it's granted too easily, especially full plenary guardianship. There are emerging alternatives to guardianship, such as supported decision making, whereby a person chooses a network of trusted individuals to help them make decisions. If you want to hear more about supported decision making and guardianship, our second episode of season one, Living well with Purpose, covers it more thoroughly. One thing that really stood out to me in researching and producing this episode is how dense and complicated elder law is, as well as how complex the decisions older adults have to make about their future are. Not only do you have to manage your assets, autonomy, and health, but you also have to sort through your personal relationships. Like in the case Judge Murphy shared, these decisions can be incredibly emotional, tied up in years of family history, as well as grief about a family member getting older and ultimately changing. [00:17:00] Speaker A: We don't support people through those decisions. [00:17:02] Speaker C: MT Connelly Again, we have no infrastructure. [00:17:05] Speaker A: Really, or coherent guidance for, for family members, for professionals, for policymakers about how to navigate these unbelievably complicated decisions. [00:17:16] Speaker C: Connally said that since early on in her career at the Department of Justice, her definition of the term elder justice has expanded greatly to become more holistic, systematic, and human focused. [00:17:28] Speaker A: At the time I was a prosecutor, and to a hammer everything looks like a nail. And I thought, oh, you know, if we can just eliminate elder abuse, then that's justice. And of course, justice is a much more capacious term. And as I grew and learned, my definition of elder justice really grew. Then I went over to the Senate and worked on the Elder justice act. And once again, I think actually my lens was too narrow then. It's not just being free of justice, it's also having rights. And I think that's also correct, of course. But it's also about having the systems and the culture support our full humanity as we age. And that it isn't just about not being sick or not being abused, but it's also about being recognized as a full human being with the full tableau of desires and wishes and hopes. And so we get stuck in these binaries about, well, do you want to be safe or do you want to have your autonomy? And actually, a, we should be able to have both, and B, what we want is much broader than that, right? We want beauty and we want love, and we want to live in a place that we like and be surrounded by the people we care about. [00:18:38] Speaker C: For Connolly, critical to new systems should be a focus on the individual, what they actually want, as well as their relationships to others. One intervention Connolly co designed called rise, which stands for repair, harm, inspire, change, support, connection and empower choice, does just this in elder abuse cases. RISE utilizes methods which have shown promise in other fields, such as restorative justice, motivational interviewing, teaming, and supported decision making. RISE advocates work with elder abuse victims or those at risk of abuse to first figure out what their wants and goals are, and then if the victim would like, work with the alleged abusers as well as other people in their lives to find a way forward. [00:19:24] Speaker A: We built it. And then I went actually to the guy who had been an APS worker and then became the commissioner for Health and Human Services in Maine and said, yo, Ricker, will you let us test it in Maine? And so we started in 2019. By 2021, Maine took Covid relief funds and expanded it statewide. And then we started crunching the data, and what we saw was that APS was referring the most intractable and complex cases, and that exposure to RISE reduced recurrence and reinvestigations by more than 50%. So then they were really excited about it, and it was written into law. So it's now a permanent part of Maine's Healthy Aging program. [00:20:08] Speaker C: Connelly said what she thinks makes Rise so successful is it's first and foremost interested in what the person they are trying to help actually wants. And in doing so, builds trust. [00:20:21] Speaker A: That initial engagement phase is everything. Instead of going in and saying, oh, my God, this place is a mess, let's clean it up, or, oh, you must be so bummed that your kid has gone off the rails or is abusing you, go in and say, what's important to you? How do you make meaning of your life? And how can I help? And that, I think, makes all the difference and is not generally how we proceed. Right. People come in with a lot of ideas about what help looks like, as opposed to asking the true expert in their own lives, what does help look like to you and what do you want? And what we've learned is that if you build trust and you're there for it and you listen to what people want, the needs and wishes evolve. [00:21:08] Speaker C: Connelly knows that changing the way we think about aging and how we support older adults is not an easy fix. She understands better than most how complicated these issues are and how much research, collaboration, and advocacy they require. But despite that, she does not give in to hopelessness. [00:21:28] Speaker A: Well, Rise gives me hope because in a way, what I learned was that things have to happen both from the bottom up and the top down, like change happens in the community. And by asking people what's important to them. But in a sort of deeper sense, what gives me hope is that we can change how we think about aging. You know, that the fear and the denial and all that stuff, those are wasted emotions. Not that I don't. You know, I mean, I have as much anxiety about all this junk as everybody else does, but. But that we can actually. That it's an indulgence that we shouldn't allow ourselves to. You know, they're wasted calories. There's no point in being scared because we're moving through time all the time, all together, and that. That we can actually do things to change how we think about aging. It's not easy, but it's also not impossible. [00:22:29] Speaker B: This topic is so important to me. For the 10 years plus that I've worked at the Penn Memory Center, I've worked on a couple of collaborative teams focused on elder justice in Philadelphia. Started with the Philadelphia Financial Exploitation Prevention Task Force, which was organized through the Philadelphia Corporation for Aging. And a main goal of that group was education of older adults about exploitation, about scams, and so on. Largely, this was through an annual Elder Abuse Awareness Day event. One that was held right here at Ralston and another that was held at the Federal Reserve of Philadelphia. And about three years ago, our neuropsychologist, Dr. Don McCannock Hamilton and I joined a multidisciplinary team. And this was organized by the Philadelphia District Attorneys Elder Justice Unit. That group, which brings together law enforcement, justice departments, and elder advocacy groups, is more interested in specific cases in the court system. It's a collaborative group, and the work they're doing is important. But I was struck by what MT Connolly said, that even if we eliminate elder abuse, it doesn't mean that we have elder justice in America. [00:23:42] Speaker C: I really appreciate MT challenging these binaries that we think in when it comes to older adults, like safety versus independence, when it's really about, you know, living with dignity as a human being and all of the joys of life that we want to have and the respect that we want to have as human beings. Something that also struck me with talking to MT Connelly and Charlie Sabatino was just how interdisciplinary elder law and elder justice is. And it reminded me of the. Of the Penn Memory center, too. You know, having social workers and doctors and lawyers and how much these issues involve so many different parties with different expertise. And I think just how interdisciplinary the future is going to be for something like elder justice, but also just in a ton of different areas that we talk about regularly. You know, this came up when we talked about guide last season. And I think that that's going to be really important is to try and include a lot of different perspectives to make sure that people are getting the support they need. [00:25:02] Speaker B: In many ways, elder justice is impossible in any one field. As MT Connolly talked about, if we really want to pursue elder justice, it has to be across all fields and industries and aspects of life. And so something as standard as a court proceeding, where you would normally expect all the key players of the prosecutor and a defense attorney and a judge, and, you know, why is suddenly a neuropsychologist part of this conversation? And the answer is this capacity and understanding the ability of the victim in a case to make judgment calls about managing their own finances. And did they make a mistake or are they the victim of a crime? And that's what a lot of these cases really come down to. And I was thrilled to hear that Charlie Sabatino was participating in this episode. We have a long history with him, our executive producer, Jason Karlewish. He and Charlie had worked together on a couple of projects over the years through the American Bar Association. And one of those key products was a 2020 guide called assisting Cognitively Impaired Individuals with Moaning. And the two of them had created a list of recommendations about how you can help a loved one with cognitive impairment who wants to vote actually cast their ballot. And then our team here at the Penn Memory center worked to create that document, format it into a bit of a booklet, and distribute it nationally. And assisting cognitively impaired individuals with voting was a hard thing for some people to accept because they knew that though they wanted their loved one to be able to vote for as long as they wanted to vote, they were afraid that their cognitive decline may impact their decision making and may ultimately change how they cast their ballots. But as you and I both know, people change their votes and their voting styles as they get older. [00:27:09] Speaker C: Yeah, I think that was one of the most interesting aspects of talking to Judge Murphy, was hearing, hearing about these cases that so directly involve understanding somebody's capacity, their ability to do something and trying to make a judgment about that. And who gets to start to make decisions about somebody's life. It's this philosophical question of autonomy and independence and capacity and when do we have capacity and when are we lacking in capacity. But it's also, these cases are so granular and about families and family dynamics and things that have happened 20 years ago, impacting who gets to be in charge of mom's finances. It's where all of these kind of questions come into place. And the fact that Judge Murphy is making decisions based on all these factors was just so fascinating to me and not a job that I could imagine myself doing. [00:28:15] Speaker B: I loved her story about part of the reason she decided to make the youngest son a co guardian of a woman is because she declared in court on public record that he was her favorite child. And that thankfully the family was lighthearted in response to that. But in my parents household, my mother likes to sort of pit us against each other for good behavior by saying that whoever did something nice most recently is her favorite child. And a few years ago she was given a frame that had favorite child listed on it. And all of our pictures are in there. And whenever we go to visit her, we just put our picture at the front of the frame. And so I'm picturing Judge Murphy using that as legal recourse in decision making down the road for. For our family is who's in the front of the favorite child frame. [00:29:11] Speaker C: That is. That's pretty hilarious. So what you. There's a. It's a frame that when either of you go, you. You move your. Your picture to the front of it. [00:29:20] Speaker B: Yeah. So I'm one of five kids, and if you don't have to move it, but, you know, if you could show up and you see your sibling in the favorite child frame, then, you know, it's pretty easy to switch it out. I think the idea was that she would move them around, but we're not leaving that power in her hands alone. So for this episode, Jake, you and Dr. Largent talk to an attorney, you talked to a judge, you talked to international expert in elder justice. What were your takeaways? What can people do to promote elder justice for their own family and society at large? [00:29:58] Speaker C: Yeah, I think my biggest takeaway was that it's important to start having conversations like this sooner rather than later. It reminded me of some of the discussions that we had in our episode. Before I go, can we talk about end of life planning? That you really want to start thinking about these things when it's not an emergency, when it's not something that is happening right there, right then, and you're making all these very emotionally intense decisions all of a sudden that involve many different people. So, like Judge Murphy talked about talking with your kids about power of attorney decisions, and Charlie Sabatino was recommending that you should seek out an elder law attorney at age 65, whether you're impaired or not. And then, you know, Mt Connolly was talking a little bit broader in that just as we individually might wait for problems to arise and then address them systematically, we need to start trying to address those problems proactively. That the way that we treat older adults in this country is. Is more like, this is an emergency. How do we fix this? Rather than how can we plan for people to live and thrive into old age? And I think having that approach, you know, both on an individual level and a more systematic state and national level is going to be important. [00:31:35] Speaker B: So essentially, it sounds like both on a family level and a policy level, identify and prevent the problems rather than solve the problems, but. [00:31:46] Speaker C: Yeah, exactly. Yeah. And really just start thinking about these things even though they're uncomfortable. [00:31:54] Speaker B: All right, thanks, Jake. This is important information, and it seems like we. We really pulled together some of the best people on the topic for it. So thanks to you for organizing this. Thanks to Dr. Largemt for her interviews and of course our our guests for joining us today. Great. [00:32:10] Speaker C: Thanks so much. Terrence. [00:32:16] Speaker B: Thanks for listening to this episode of the Age of Aging. This show is made possible by generous support from the Michael Nadoth Communications Hub Fund and our sponsor, the TIAA Institute. The Age of Aging is produced by the Penn Memory center in partnership with the Institute on Aging and the Penn FTD Center. Our team includes Dalia Al Said, Jake Johnson, Jason Karlewish and myself, Terence Casey. Contributors include Nicolette Calavecchia, Emily Largen, Allison Lynn, and Megan Sharp. [00:32:46] Speaker C: Special thanks to MT Connelly, Charlie Sabatino and Judge Lois Murphy for being a part of this episode. If you enjoyed this episode, please consider subscribing to the podcast, leaving a review or giving us a like. These types of things really help others find the show. And if you know someone who might be interested in these conversations, share this episode with them. We also love hearing from our listeners. If you'd like to reach out, our contact information is in the show. Notes.