Episode Transcript
[00:00:01] Speaker A: I have to think in my mind, I'm like, is this really true?
Because I can't believe other people have ever made it through this.
Every day there's new grief.
[00:00:11] Speaker B: Yeah, every day. Something like that.
[00:00:13] Speaker A: Every day.
And it's just hitting me that I'm going back to that tomorrow.
I'm going back to the reality.
And what if I'm not strong enough to do it?
[00:00:38] Speaker B: Hi, this is Jason Korlewish, co director of the Penn Memory center, professor at the University of Pennsylvania School of Medicine, and the executive producer of the Age of Aging.
Welcome to the last episode of season three of the Age of Aging. We look forward to seeing you back in September for season four, where you've got lined up some very exciting with scientists, writers, artists to talk about what it means to live well with an aging brain. But we won't be totally gone this summer.
Join us in August for a special episode. My dear friend and colleague David Woelk and I will sit down and talk about the latest advances occurring in Alzheimer's disease and other diseases that cause dementia. Dave and I will have come back from Canada, Toronto, Canada, where the international Alzheimer's meetings will be occurring late in July.
[00:01:22] Speaker C: Hi everyone. Jake Johnson here. As Dr. Karlosh said, this is the last episode of season three of the Age of Aging. Thank you all so much for listening and calling in. You made this such an amazing season. And as Dr. Carlos also said, we will be back very soon, so definitely keep an eye on our feed in the coming months.
On today's episode, we'll be focusing on another major cause of dementia, Lewy Body disease. In particular, we'll be talking about the film Facing the Window, which documents the challenges of Lewy Body Dementia, both for the individual living with the condition as well as their caregiver. We want to first start with a clip from the documentary that I think portrays the wide range of emotions experienced throughout the film. The clip features the two central caregivers of the film, Linda and Carla, meeting up with the other members of their virtual support group for the first time in person.
Their retreat is one of the more joyful moments in the movie and puts into contrast both for the audience and for the caregivers themselves, the stress and the grief that occupy their day to day lives.
Following the clip, Terrence will talk more about Lewy Body Disease as well as a screening of Facing the Wind that he recently attended in Philadelphia.
[00:02:44] Speaker B: I can't even imagine going through this without you guys.
[00:02:47] Speaker A: I'm taking you home with me. I'm just saying I Borrowed a big suitcase. And you're gonna be.
[00:02:54] Speaker B: Oh, my goodness.
I'm just hoping that I can take this energy home with me. Cause it'd be like you're in a boxing ring and say, okay, come on.
[00:03:02] Speaker D: I got this.
[00:03:02] Speaker B: I can carry him through this. And then you see another thing. It's like, bam, you know, and kind of knocks you down. You gotta get back up. Okay. And now Patrick's awake.
[00:03:11] Speaker A: Time is shrinking.
[00:03:12] Speaker B: So. So I realized this is progressing. Oh, my God.
[00:03:16] Speaker A: I have to think in my mind. I'm like, is this really true?
Because I can't believe other people have ever made it through this.
Every day, there's new grief.
[00:03:26] Speaker B: Yeah. Every day something new.
[00:03:29] Speaker A: And it's just hitting me that I'm going back to that tomorrow.
I'm going back to the reality.
And what if I'm not strong enough to do it?
Gotta walk over the coals, get to the other side, unfortunately. And we're, like, right in the middle of the coals.
[00:03:48] Speaker B: Under the fire right now is under our feet.
[00:03:51] Speaker A: Yeah. I'm just.
I'm suffocating.
He would be there for me and would never be like this. And the thought of going home.
This is how I feel when I walk in my house.
I feel like I can't even breathe.
[00:04:12] Speaker B: Something my mom always said.
This, too shall pass.
Take a deep breath.
We got you.
[00:04:36] Speaker D: Breathe.
As we wrap up this season of the Age of Aging, Jake and I thought we ought to spotlight a cause of dementia that is too often misunderstood, misdiagnosed, and hidden in plain sight. Lewy body disease, or LBD.
For many, the 2014 death of Robin Williams was the first time they heard of this disease. The legendary comedian was just 63 years old when he took his own life, and many initially believed depression was the cause. It wasn't until after his death that an autopsy revealed the truth. Robin had been living with advanced Lewy Body disease.
In the final year of his life, Robin experienced a cascade of symptoms. Confusion, paranoia, hallucinations, memory lapses, and motor difficulties. He knew something was wrong. His wife, Susan Schneider Williams, knew something was wrong. But despite seeing numerous specialists, they never received a correct diagnosis in time.
His story is not unique, but it is a powerful reminder of how invisible this disease can be and how urgently we need to talk about it.
Lewy Body Disease is the second most common cause of dementia after Alzheimer's disease, and yet it remains under recognized and under discussed.
That's partly because it sits at the intersection of two better known diseases, Alzheimer's disease and Parkinson's. Disease, sharing symptoms with both, but also presenting unique challenges of its own. So what exactly is Lewy Body Disease?
It's a complex neurodegenerative disorder caused by abnormal protein deposits called Lewy bodies in the brain. These deposits disrupt the brain's normal functioning, leading to a wide range of symptoms. People with LBD often experience fluctuating cognition, visual hallucinations, REM sleep behavior disorder, and Parkinsonian motor symptoms like stiffness and tremors. But what makes LBD especially difficult is its unpredictability.
One day, a person might seem almost like their old self. Lucid, mobile, engaged.
The next, they might be confused, disoriented, or physically frozen.
This rollercoaster can be incredibly disorienting for caregivers and loved ones. And then there's the hallucinations. These aren't just fleeting shadows or vague impressions. They can be vivid, persistent, and deeply distressing.
Diagnosis is another hurdle. Because LBD mimics both Alzheimer's and Parkinson's, it's often misdiagnosed as one or the other.
This can lead to inappropriate treatments.
Some antipsychotic medications, for example, can be dangerous for people with lbd.
But beyond the clinical facts, there's the emotional toll. LBD doesn't just erode memory or movement. It chips away at identity, relationships, and the sense of safety in one's own mind. And for caregivers, the journey is often one of isolation, exhaustion, and heartbreak. That's why stories matter.
And that's why I want to talk about a film that brings this disease and the people living with it into the light.
The documentary Facing the Wind, directed by Deirdre Fischl, is a raw, intimate, and unforgettable look at couples navigating the later stages of LBD. It had its world premiere at DOC NYC in 2024, and then I had the privilege of attending a screening here in Philadelphia.
One of the couples featured, Linda and Jim Cebula, were originally from the greater Philadelphia area, and their story felt especially close to home for me. Not just geographically, but emotionally. Jim, a former electrician and musician, played in a band called the McLean Affair. He loved music. He also loved the outdoors, especially national parks. And as someone who shares those passions, I found his story deeply moving.
In the film, we see him strumming his guitar, the chords now simple and halting. We see him attempt a road trip with Linda to visit national parks, only to be overwhelmed by fear and confusion.
The disease had taken not just his memory, but his music, his mobility, and his sense of freedom.
Linda, a former science teacher, is his primary caregiver. She's candid, emotional, and fiercely devoted.
She started an online support group for caregivers, which became a lifeline for many, including Carla Pryor, another caregiving spouse featured in the film.
Carla's husband Patrick was a nurse before his diagnosis.
She describes how he once had a great sense of humor and took pride in caring for others.
But LBD changed him. Carla had to close her salon to care for him full time. Eventually, she brought in part time help, but the emotional weight never left.
The film opens with stories of how these couples met Linda and Jim at an amusement park in Wildwood, New Jersey. For example, we see wedding photos, hear about first impressions, and then, decades later, witness Carla and Patrick renewing their vows in a quiet, powerful ceremony at home. But Facing the Wind doesn't romanticize caregiving. It shows the cracks, the exhaustion, the resentment.
In one support group scene, Linda breaks down saying, I'm suffocating. Another caregiver shares that his wife left him after his diagnosis, unable or unwilling to face what was coming. The contrast between those who stay and those who leave is one of the film's most poignant themes.
Love in the face of LBD is not just a feeling, it's a choice. A daily act of endurance, sacrifice, and grace. And yet there are moments of joy. Though cut short, Linda and Jim's road trip is filled with small victories. Carla and Patrick share quiet laughter. The support group becomes a place of solidarity, where caregivers and patients alike can say the things that they can't say anywhere else. Facing the Wind doesn't offer easy answers, but it offers truth. And in doing so, it honors the people living with LBD and those who walk beside them.
Watching it in a room of caregivers, clinicians and families, I felt something rare. Collective recognition. This film gives voice to what so many experience in silence.
After the screening of Facing the Wind here in Philadelphia, the lights came up, but nobody moved. And what followed was one of the most honest, heartfelt conversations that I've witnessed around Lewy Body Disease.
[00:11:07] Speaker B: See if I can get on. There we go. We're going to have a short discussion with some of the people involved in producing the film and then some people who have very important information about the issues. And then we really want to draw you in to the conversation because I know a lot of people here are here because of personal experience.
[00:11:26] Speaker D: The panel included the film's director, Deirdre Fischl, caregiver and podcast host Linda Cibula, neurologist Dr. George Connercott from the University of Pennsylvania, and Susan Shiffrin, founder of Arts Philadelphia.
The conversation quickly expanded to include the audience, many of whom were caregivers themselves.
Geirdra opened by saying that her hope for the film was to inspire people to care, to reach out, to not turn away from the discomfort of dementia, but to lean in. She spoke about how making the film changed her. It made her more present, more willing to show up for friends in crisis, even if she didn't know exactly what to say.
[00:12:04] Speaker E: One of the things that started happening to me is just on a really basic level that when I heard a friend of mine's wife was dying of cancer, and I started saying, can I come over and make a meal? What can I do to help? I don't really need anything. Are you sure? Because I'll just be there, you know, just having a sense that we are a community.
And it's very easy, you know, we're all very busy to kind of turn the other way. And so, I guess just at a really basic level, I hope the film inspires people to care, to get it, and to reach out.
[00:12:46] Speaker D: Linda, whose story is central to the film, shared what it was like to relive those moments with her husband, Jim. She reminded us that caregivers often say, I've got this, even when they're breaking inside.
Her advice to friends of those living with lbd, don't ask what you can do. Just do something. Bring dinner, sit with a loved one.
Just show up.
[00:13:08] Speaker A: There are times people say, what can I do for you? And we as caregivers, like, I got this.
You don't need to do anything. I got this. I got this. Just ignore them and do it anyway.
That's what I think.
There was a point where I broke because I tried to be strong. And like, I'm breaking now.
I thought I could do it, you know, without any help. And it is a very lonely journey caring for someone with a dementia or any terminal illness. But, yeah, even if, you know, a neighbor's going through something, just bake them cookies. Do something, you know, or tell them, I'll come sit with your loved one while you go get your nails done or your hair cutters, even grocery shopping, I would like to see that if you all could pay that forward somehow.
[00:13:56] Speaker D: Susan Shifrin echoed that sentiment, emphasizing that caregivers often live in silence. They lose friends, they lose family, and yet they keep going.
She spoke about the power of the arts to bring joy into unexpected places and how her organization, Arts Philadelphia, creates programs tailored to the unique needs of caregivers in the region.
Dr. Connercott brought a clinical perspective, but a profoundly human one. He talked about how in the brief moments he gets with patients and their families, he tries to ask, how are things really going?
He called the film a call to action, urging us to tell our stories, to advocate for better funding, and to remember that no one should have to do this alone.
One of the most moving moments came from an audience member, a woman in her 40s whose husband had recently been diagnosed.
She asked Linda how to help her children grieve when she was barely holding on. Linda's response was honest and raw.
You can't do it alone. I tried. I broke, she said. She encouraged the woman to educate her family, to share resources, and to let her children in so they wouldn't feel shut out of the journey.
[00:15:03] Speaker F: Linda, I wanted to say thank you so much for sharing your story. I'm also young, 46.
My husband started having symptoms about four years ago, so one, he doesn't want people to know, but he's different, so it's hard not to know. But my question for you would be, I'm grieving my husband, but how do I help my kids? They're young, they're in their 20s, when I can't help myself.
[00:15:32] Speaker B: Freedom.
[00:15:35] Speaker F: That's my question for you, is if you could offer me some advice on how to manage this.
[00:15:45] Speaker A: You can't do it alone. And they've already seen. They're seeing that he's different. So I think you need to bring everybody in and let them know. I mean, there's so much out there, like the Lewy Body Dementia Resource Center. There's pamphlets you can order.
There's pamphlets you can order for your family.
How to tell your family about Lewy Body. My daughter is just now 26, and my oldest is 28. So it's been six or seven years.
They told me after he passed. Why didn't you let us in sooner? Why did you hold this?
We wanted to know, why did you try to protect us?
Because I think it was.
I thought I was protecting them, but I wasn't.
[00:16:32] Speaker F: Okay.
[00:16:33] Speaker D: Other audience members shared their own stories. Misdiagnosis, guilt, and unexpected beauty.
One woman spoke about her husband's best friend, who also died of LBD and wondered if environmental factors might be at play.
Another asked how to convince a loved one to accept outside help. Linda's advice. Just bring them in. They'll get used to it, she said.
The conversation returned again and again to the theme of isolation and how dangerous it can be.
Diedre shared a statistic that stunned the crowd 30% of caregivers die before the person they're caring for.
[00:17:08] Speaker E: When Carla, when she was in the church doing the seminar on essentially don't do it alone, and she said, oh, 30% of caregivers die before their loved one. And I just, literally, my man, I just said, that's not true. I mean, in my head, I didn't say it out loud, but I thought that that just can't be true. And then I looked it up and that it is so true. And you're like, wow, so that means that it really is kind of a matter of life or death to take care of yourself.
[00:17:40] Speaker D: Susan added that the stress of caregiving is equivalent to smoking three packs of cigarettes a day. And yet there was hope, there was laughter, there was community.
One audience member whose father had LBD said it best. There are blessings along the way. There's beauty beyond this.
As the discussion wrapped up, we were reminded that Facing the Wind is more than a film. It's a mirror, a lifeline, and a call to action.
[00:18:14] Speaker C: I would now like to welcome back for our discussion on Lewy Body Disease, executive producer of the Age of Aging and co director of the Penn Memory Center, Dr. Jason Karlewish, as well as my co host and director of communications at pmc, Terrence Casey. Thank you guys for joining me.
[00:18:31] Speaker B: Hey, Jake, great to be here.
[00:18:33] Speaker D: Thanks, Jake.
[00:18:34] Speaker C: Terrence did a really great job in his overview of Lewy Body Disease and reflections on the film Facing the Wind.
But before we get more into a discussion about the documentary and caregiving, Dr. Carloish, could you talk a bit about Louie by disease, what it looks like and its relationship to Alzheimer's?
Yeah, it's.
[00:18:54] Speaker B: It is one of the causes of dementia, and I'd say it's one of the sort of the, the big four or five causes. So, too, is Alzheimer's disease. One key thing that we've learned from our autopsy studies is oftentimes the two diseases coexist anyway. What do we talk about when we talk about Lewy Body Disease? We talk about a disease that has kind of a classic cluster in its full presentation of symptoms. One is what we call laxing and waning consciousness or alertness. Patients have good days and they have bad days. It can be rather dramatic.
Two, they can have rather notable visual distortions that can be rather, frankly, fantastic. They have anxiety, notable anxiety.
And they have what we call Parkinsonism. And what that's describing is the sort of stiffening of gait and movement that looks a lot like Parkinson's disease, which is Foreshadowing the sort of further vast mystery that is Lewy Bai disease, that rapidly unfolding, which we should talk about. So those are the core symptoms, very different than Alzheimer's, and yet early in its presentation, it can look a lot like Alzheimer's, and Alzheimer's can sort of look a lot like it. And I will say the advances we've made in biomarker testing are really helping us sort out between the two diseases.
[00:20:06] Speaker C: So do you mind also getting into how Lewy body disease is diagnosed?
[00:20:12] Speaker B: It all still starts with a good history, and so you sit down and talk with a patient and family member, and what you're looking for is a story that fits into that cluster of things I told you about. Waxing and waning, alertness, troubles with multitasking, anxiety, distortions of visual imagery, and this Parkinsonism.
Not all patients cluster all those signs and symptoms together. And that's where things get ambiguous.
There are tests we can order that help sort things out, in particular a PET scan of the brain. But what's most promising, and I recently used this, are biomarker tests, in particular spinal fluid biomarker tests that measure the pathology that we think explains Lewy body disease, namely alpha synuclein. And I have a vivid, vivid, vivid case study I'm working on of a patient who had mixed features that look like Alzheimer's and or Lewy body disease in days of old. I would have said, not sure which one. It could be both. But I got a biomarker test of the spinal fluid, negative for Alzheimer's and positive for synuclein. It's an early presentation of Lewy body disease.
[00:21:12] Speaker C: Wow. Interesting. Do our clinicians at the Penn Memory center see people with Lewy body disease?
[00:21:18] Speaker B: Absolutely. Yeah. And we have a center that has a focus of Lewy body disease. Dave Irwin here is one of the leaders of that. But certainly we're seeing patients with it when they come to the Penn Memory Center. I think one of the key messages from this episode is Alzheimer's is a common cause of dementia. It is. But Lewy by disease is another very common cause of dementia, and it's one that we need to take quite seriously. It's a distinct pathology that therefore requires different approaches to discovering disease slowing treatments. And it has a very different clinical presentation. That's doctor talk for patient experience and therefore caregiver experience. And I think this documentary that you all have been talking about shows just how profound that experience is for both patient and caregiver. And you really need to understand the disease to be able to explain to the patient and caregiver what explains what they're feeling now and what down the road might they feel. It's not a disease. You want to be surprised by the visual distortions. The problems with anxiety, the waxing and waning levels of alertness can be very frightening. And I think it helps for people to know this is what the problem is. And these are the kind of problems that might develop.
So it isn't such a, and I'm going to use a strong word, horror story, because I think one of our missions at the memory center is if we can give people certainty in diagnosis, we can help mitigate the horror story that surrounds these diseases. Because they need not be horror stories. Doesn't make them pleasant, but it makes them a different experience.
[00:22:41] Speaker D: It was interesting in the film Facing the Wind. Linda Sepula is one of the caregivers featured throughout. And one of her takeaways in the discussion after the film screening was that neurologists were aware of Lewy Body Disease, but most of the PCPs with whom she had engaged, if they knew it, they knew it by name only. And then, because of the nature of her husband's disease, she was also dealing with emergency rooms and EMTs coming to the house. And she felt that part of her role as a caregiver was meeting them at the door, either theirs or the door of the er, to say, my husband has Lewy Body Disease. And here's some information, like a basic one sheet on it. She said, you know, sort of at the risk of offending the clinician, that she had to be armed with that material.
[00:23:29] Speaker B: Not a surprise. Yeah, no, I saw that. I've heard that story many times that you have to educate healthcare providers about what it is, this disease. I've seen that with other less well recognized causes of dementia like corticobacilla degeneration and progressive supranuclear palsy. The level of misunderstanding and ignorance out there is sadly sufficient that it can cause great harm to patients and family members.
[00:23:52] Speaker D: Linda had also, not in her husband's case, but in the case of other members within her support group, that some of the early diagnoses were actually more like schizophrenia or bipolar disorder. And those were early misdiagnoses, in her words. They were actually prescribed medication that was harmful to someone living with Lewy Body Disease. Does that sound familiar to you at all?
[00:24:15] Speaker B: All these diseases are a little bit like a bankruptcy. They present slowly and then all at once.
And even in the hands of a skilled diagnostician, you can struggle to sort out what's going on. And the result is often there's misdiagnosis. Things look like anxiety disorder or the emergence of late life schizophrenia, which is, I don't know what that is, or Parkinson's disease. And it's only over time that you begin to see, oh, wait a minute, there's some visual distortions or there's emergent cognitive problems here, et cetera. But one of the consequences of misdiagnosis is harmful treatments. And probably the most harmful is patients with Lewy Body disease are very sensitive to antipsychotic medications, particularly the Haldol based derivatives. And it can cause dramatic movement disorders and impairment of cognition. And those are drugs you want to avoid in these patients. Indeed, there's a strong role for what are known as the quote, atypical antipsychotics for these patients to help manage the profound disturbance in emotion that can occur, particularly from the visual distortions. So, yeah, patients suffer because of misdiagnosis and of course family members as well suffer because of misdiagnosis. I have some vivid anecdotes of some of these patients. I had one gentleman who, you know, his dominant symptoms were troubles with multitasking, a bit of anxiety, the Parkinsonism, but the dominant symptom was the visual distortions and also distortions in the way he perceived individuals. That's another symptom people have. We'd have him do the clock draw test and what began to happen was he would see clocks everywhere and he would tell the family, like, what are all those clocks over there and whatnot. And then he worked out a very well formed delusion about me and the clocks. And he would talk about it endlessly at home.
And as you can imagine, for the family this was disturbing. But can you imagine what it must be like to have someone experience that and not have had a clear explanation about what's going on? Like, oh, well, that's just dementia or I mean, that's what makes it such a frightening disease. I had another patient who would see well formed images of men in the house. And she was interesting because she was aware that this can't be real and it bothered her and she almost would occupy, like, get these men out. And then she would realize, well, they can't really be here, et cetera. And she also kind of had a delusion that there might be romantic suitors and whatnot. And finally I had another patient who in the evening, in a very matter of fact way, turns to his wife in the bedroom and says, you know, you better get out of here. Before my wife comes back, what he had done was dissociated. The idea that the woman in my house is my wife from the woman in the house that is his wife. And these are the kind of distortions of perception, of visual imagery and recognition of individuals that these patients have, which make it such a very difficult disease and one that really causes an enormous amount of existential suffering and strife for the patients and also for the family members.
[00:27:23] Speaker D: A little bit of a pivot here, but you talk about sort of the waxing waning of Lewy Body Disease, and it was referred to in the film as riding a roller coaster. You know, eventually gravity takes its hold, but there are the ups and the downs. One of the strongest moments of the film were the parts where the men, and they were all men in this film living with Lewy Body disease, were aware of the disease and sort of reflecting on it. There's one moment where Jim Cebula laid down on his bed with his wife, and he just starts to cry, and he goes, it's not fair. It's just not fair. And then there's another part where another patient recounts going in for a diagnosis and before receiving it, says to his clinician, am I crazy? I must be crazy, where they're very aware of their problems. And it's not what we often hear in the clinic of I have memory problems. It's these people who, as you mentioned, their reality is being altered.
[00:28:25] Speaker B: One of the fictions that surrounds neurodegenerative diseases, diseases like Alzheimer's and Lewy Body disease, et cetera, is that, quote, patients lack awareness. There certainly are patients who do have impaired awareness, but it is a very variable phenomena. And in persons with Lewy Body Disease, the. I would say the awareness is more the norm than the exception.
And that statement of, am I going crazy? The ability to make an accurate diagnosis is so valuable because what it does is it takes this mystery in you and no longer makes it a mystery, and it doesn't make it pleasant, but it does take away that fear.
[00:29:02] Speaker C: You mentioned this link between Parkinson's and Lewy Body. Could you talk a little bit more about that?
[00:29:08] Speaker B: So Parkinson's disease has a very similar pathology, namely alpha synuclein, but a very different, in its classic movement disorder presentation manifestation, namely a rigid, shuffling gait. And many patients with Parkinson's are cognitively unimpaired for years. But many patients with Parkinson's start to develop cognitive impairment to the point that we have a concept of Parkinson's disease, dementia pdd, as they call it. It's the same pathology, but it's in different spaces, different places in the brain. And so it's manifesting in different ways. And there's an emerging debate in the field of what do we call this? Do we call this all synucleinopathies? Do we call it all Lewy Body disease that manifests in the movement form or the cognitive form, et cetera? The politics of it, of course, is that you've got a whole robust clinical research and advocacy group for Parkinson's, and you've got the same thing, though less mature, for Lewy Body. And so in some sense, you have to sort of reconcile these very different communities who have their own interests and structures, et cetera.
[00:30:11] Speaker D: Facing the Wind focuses heavily on the caregiver experience and perspective. And there are some deep, powerful moments showing the person in the act of caregiving and then sort of recovering from the act of caregiving. And again, to avoid the horror story notion as you described it earlier, there are moments of joy in caregiving. There are times where the caregiving wife is recalling that the husband had proposed to her the previous day, and there are moments where the husband is still creating music on his guitar, as he did for many years. True moments of joy. But then there are also moments where caregivers are breaking down in tears, heavy sobs, and talking with support groups and working with adult children and trying to navigate the disease. But what I thought really stood out to me was a moment that was very positive where these adult children had given their mother a cape that said supermom, really celebrating her strength as a caregiver, was turned around both in the film and in the discussion after of They're Not Superheroes. But you've also seen a lot of caregivers. How does that relate to your experience, either with Lee Body Disease or others?
[00:31:28] Speaker B: What you've talked about there nicely aligns with what my colleagues and I have experienced from the narratives we hear from caregivers about what it's like to be a caregiver. For a person with dementia, particularly a person with dementia caused by Lewy Body Disease, caregiving is work. I've said that I've maintained that it's very morally and ethically challenging work of providing mind support.
And that's one of our principal sort of premises of our group with the Age of Aging, that ultimately this is about living with a mind that's been damaged by disease and how to support it.
And I think it's been pretty clear from our discussion of what it's like to have Lewy Body disease that it really distorts the mind and that shows you that foregrounds in plain sight the hard work of caregiving for someone with Lewy by disease. I'm not trying to diminish the hard work of the other diseases, but this one is particularly difficult.
One of the tragedies, ironic tragedies, I think of caregiving is a really good caregiver is someone who really knows the mind of the other person. But it's that knowledge and intimacy that makes it so difficult to do it.
And I agree. I think this idea that caregivers or superheroes or angels is an incorrect metaphor. They are humans and they are doing human work to help another human. And the idea that someone is an angel or superhero implies that they are at a distance of or unaffected by, and in the case of angels, even immortal, etc. And that's quite the opposite. They're mortal people who periodically need to get away.
[00:32:58] Speaker C: In the Q and A after the film, we heard some recommendations for helping a loved one who's a caregiver or your neighbor who's a caregiver on an individual personal level. What kind of broader policies on a nationwide level could we be pursuing to help caregivers in this situation?
[00:33:18] Speaker B: I think the documentary really amplifies the need to take caregiving seriously. It's not just another aspect of being a family member. It's a unique set of skills that people need to have education and training in order to do it well and the resources to be able to deliver do it so for example, there comes a time for many patients where long term care services and supports are needed outside of the home, particularly like an adult day activity program and or the other humans coming in periodically to help and provide additional care. And for many that means how are we going to pay for that? And in America we have a very fractured system to do that. Much of it's in Medicaid, which right now is under great threat for cuts at the time that we're recording this. The other important thing is to create a workforce that can diagnose, treat and care for patients and caregivers. In other words, we need clinicians in the fields of medicine, social work and psychology who understand these diseases and the experience of what it's like to be a patient and caregiver living with these and finally continue to raise awareness and talk about these diseases. The more we understand them and know what they are, the less they become lurid metaphors for other things that have nothing to do with the disease, but rather the stuff of horror stories.
[00:34:33] Speaker C: I think that's a great place to wrap our discussion. Thank you both so much for sharing your insights and expertise on Lewy Body Disease, and thank you for a great season of the Age of Aging.
We covered a lot of fascinating topics in aging this season and I just want to highlight a few of them here.
In our first episode of the season, I Had My Old Girl Back, we learned about the out of the ordinary, but actually not so out of the ordinary moments of lucidness in people with dementia termed paradoxical lucidity.
We looked at planning for end of life in Before I Go, Can We Talk? And why you might consider using a death doula during that process.
In early onset caregiving, we heard from young caregivers who began looking after a parent with dementia much earlier than anyone would have ever expected, and we explored a changing healthcare system for older people in the United States in transforming a system of care.
Those are just a few of the topics we covered this season, so if you missed anything, please go back through our catalog and give those episodes a listen.
As you know, we also introduced Beautiful Questions this season, a concept from artist and author Anne Basting, and asked listeners to call in with their answers on the show. So in addition to the answers to this week's Beautiful question, what is a place with special meaning to you? We thought we'd play a few of our favorite responses from throughout the season.
[00:35:57] Speaker F: My name is Nora O', Neill, I live in Elkins Park, Pennsylvania and my most favorite memory is from the two room schoolhouse where I attended school until I was 13 years old. It was a wonderful time with two wonderful teachers and friendships that have lasted for 70 plus years.
Thank you. Hi, my name is Lynn Cronimez, I currently live in Morgantown, Pennsylvania. However, I grew up in the Lehigh Valley and my father worked as a boilermaker for the Bethlehem Steel. He was responsible for repairing the blast furnaces.
So there were five of them in a row. They had shut one down and he would take his crew up and they had 30 minutes to complete some of their welds before the ones on either side would blast and then they couldn't continue until both blast furnaces on either side were done blasting. So I had no idea it was so dangerous. It's now a great venue for concerts and there's an art center there. So I'm so glad that it's been preserved for people who can learn about Bethlehem Steel and I just appreciate how hard my father worked for us. Thanks.
Hi, my name is Teresa James, I'm calling from Philadelphia and my wonderful place is the Physics Garden that is on the grounds of the historical site for the Pennsylvania Hospital. It is a sensory delight.
You can feel time slip away as you walk into the garden and there are herbs and medicinal plants that you can smell and there's just quiet. And it's a wonderful place to sit with your thoughts. And I've been going there 25 years and nothing changes. And it's really great. Thank you. I love this show. I learn a lot.
Hi, my name is Leah and I'm calling from Philadelphia, Pennsylvania. I would say a sound that I find to be beautiful is the sound of crickets in the summer down south.
[00:38:07] Speaker B: My name is Mike.
[00:38:08] Speaker F: I'm calling from Camden, New Jersey.
[00:38:10] Speaker B: And food that makes me happy is.
[00:38:13] Speaker F: Sugar before dinner because it reminds me.
[00:38:15] Speaker B: That I'm an adult and no one.
[00:38:17] Speaker D: Can tell me no anymore.
[00:38:19] Speaker F: Hi, my name is Deirdre Collins. I'm calling from Abington and I am most proud of my children.
How they are such beautiful people, how hard they work, how they love their families and how they try to do good in the world. And also, although I can't take any credit for it, I'm proud of their spouses, my son in laws and my daughter in law similarly, because they also work very hard, love their families, and try to give something back to the world. And though it seems boring at the age of 67, having been a doctor, still being a doctor, and done many, many things, by far, this is the most wonderful thing I've ever done.
Hi guys. My name is Susie. I'm an occupational therapist and driving rehabilitation specialist here in Pennsylvania. I love the podcast.
The one thing that makes me laugh at the time, it did not make me laugh. My two year old daughter would play this electronic music non stop and it was just going on and on and on. But then we caught the cutest video of her dancing back and forth to it. I saved it on my phone and it's one thing that always makes me smile and laugh every time I see it. All right, you guys, keep doing what you're doing. Take care. Bye. Bye.
My name is Helen Blackman.
[00:39:41] Speaker B: Something I would like to teach another.
[00:39:43] Speaker E: Person is that moving forward in life.
[00:39:46] Speaker B: Is a blessing and you never want to backtrack.
[00:39:51] Speaker F: Whatever we experience, it was an experience and we're moving forward and we're here now.
[00:39:58] Speaker C: Thank you to everyone who called in this season and thank you to everyone who has been listening. We started this podcast a year ago, not really knowing what it would become and we're so happy with the audience we've built and the stories we've gotten to tell. So far, we only have more ideas, so please stay tuned for season four and beyond.
All right, until next time.
[00:40:23] Speaker D: 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.
[00:40:37] Speaker C: Contributors include myself and Terence Casey, as well as Nicolette Calcavecchia, Dalia El Said, Jason Karlewish, Emily Largent, and Megan Sharp.
[00:40:47] Speaker D: More information on the stories you heard today can be found in our show Notes and on our website, pennmemorycenter.com.
