Episode 177: The Role of Caregivers in Parkinson’s Dementia

Dan Keller 0:02

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Care partners are crucial for helping to maintain the quality of life for someone with Parkinson's disease, especially as the condition progresses and needs change in the later stages. Dementia can become a challenge, so it's helpful to know the signs, even if your loved one isn't experiencing them just yet. In this episode, Dr. Jori Fleisher, a movement disorders neurologist at Rush University in Chicago, and Claire Pensyl dive into Parkinson's dementia. Claire was the care partner for her husband, Ira, who had Parkinson's disease and Lewy body dementia. They talk about what dementia may look like, the different ways it can present itself, and how to best support a loved one, starting with taking care of yourself as a care partner. I started off by asking Dr. Fleisher to give us a picture of how cognitive changes may look like in a person with Parkinson's disease. Can you talk about some of the cognitive changes from mild cognitive impairment on and transitions to Parkinson's dementia, and how that may look?

Dr. Jori Fleisher 1:59

Absolutely, I think cognitive changes in Parkinson's are a really under-recognized and under-discussed symptom, especially when it comes to clinic visits at times, and yet it's something that's often really present at home and in people's daily lives. And so bringing increased recognition to this, you know, thank you, Dan, for the opportunity, and the Parkinson's Foundation, to talk about this. So some of the changes that we can see early on can be trouble with attention and concentration. So someone who used to be able to focus on what they were doing at work, and if there was a minor disruption, they could get right back to what they were doing, may have a really hard time kind of honing back in on what they were working on before a disruption happened. They may have a hard time concentrating, so they might be in the middle of a discussion with someone, something else comes up, and they really lose their train of thought. And the other areas where we really see changes are executive function, so decision making, problem solving, things like if you've got a list of chores or errands that need to be run, what makes sense to do first and what has to come next. Things like that can really start to change, and can change subtly, but can be a change from that person's baseline. And then visual-spatial changes. So, essentially, if we assume that vision is coming in okay, right, and someone complains of trouble seeing, we want to make sure that they've been to their eye doctor, their glasses prescription is up to date. But often what's going on in Parkinson's is that the images that are being processed in the back of the brain aren't being processed quite the same as they used to be. So I think about on those side-view mirrors—the image may be different, "may be closer than it appears"—so people can have trouble with depth perception. Someone who had a great sense of direction previously may find themselves getting turned around, even in familiar places, let alone having a harder time kind of navigating in unfamiliar places. And when these begin, they're very subtle. Nothing in Parkinson's should happen overnight, but they may become more noticeable to the person with Parkinson's or to their care partner. And when they're reaching that level where they're starting to become more noticeable, they're becoming more bothersome, but they're not necessarily preventing someone from doing something, that's what we would call mild cognitive impairment, or MCI. And as time goes on, if things progress and those symptoms worsen to the point where they're interfering with daily life—they're preventing the person from doing their job, their hobbies, helping themselves with daily activities like bathing and dressing—that's really when we say someone has reached the definition of Parkinson's dementia.

Claire Pensyl 4:46

I think of it as issues where the caregiver may say, "Is it me or is it my loved one?" and the two examples that I can think of are—there's a Latin word for it, I call it the "what on earth were you thinking" symptom. The example that I can give is Ira could only walk with a walker, but there was an occasion where he was in a skilled nursing facility and already tight, anxious, and he decided that he could stand up in his stocking feet and walk across the floor. I wasn't in the room. There was someone there to catch him when he fell, but it's a classic example of "what were you thinking?" And it's the kind of thing you don't even think to mention to your neurologist, but they need to know it.

Dr. Jori Fleisher 5:37

I think that's such a great point, Claire. And a lot of times, you know, what I'll hear in clinic is, "Well, how do I know that this isn't just a senior moment, or you know, normal aging?" And there are a lot of things in terms of Parkinson's cognitive changes that absolutely can be part of normal aging. Everyone can have that tip-of-the-tongue phenomenon too, right, where you're at a party or something, and someone comes up in front of you, and you go, "Oh my gosh, I know who this is, and I can't think of their name," and as soon as they walk away, of course, it was Mary, and you know, I know them from this, right? That happens as people get older, and is more common as Parkinson's goes on, and we start to have some cognitive changes. So I think there are a lot of different examples of, you know, is it me, is it them, is it Parkinson's, is it aging? What is it?

Claire Pensyl 6:24

And some of it is also a question of just keeping a journal, keeping notes, so that you start to see patterns, and then you can talk to the doctor.

Dr. Jori Fleisher 6:34

100%. I think if you see something, say something, and especially if you're seeing a pattern, to be able to say, "This is what I'm noticing. It happens when [blank], right? Or here are the things that make it better. Here are the times I notice it more." That is tremendously helpful when thinking about cognitive changes.

Dan Keller 6:52

Do these come sort of as a constellation, or is it one predominant sort of thing that you keep noticing, and see a pattern in that?

Dr. Jori Fleisher 7:03

That's a really great question, Dan. I think it can be both. There are certainly individuals who present with multiple domains or multiple areas of thinking and memory affected. Often, because these are so subtle, and because they change so slowly over time, by the time we're talking about it in clinic, there are often multiple different areas that are being affected. But I suspect for a lot of people, one thing starts to change first. The hard issue is that, you know, when we are looking back retrospectively, it's kind of hard to pinpoint, well, was that really a change? Maybe I was just tired. Then we were going through some things, life was really stressful. So I think we tend to see multiple areas affected by the time we're talking about it.

Claire Pensyl 7:51

And I think part of the problem is that there aren't just so many symptoms, there are hundreds of symptoms, and if you don't even have a remote idea of the universe, you don't recognize them as symptoms.

Dr. Jori Fleisher 8:07

You don't know what you don't know. There are hallucinations that can happen with Parkinson's dementia, and if it's happening when someone is hospitalized, for example—I know this is something that went on with Ira and goes on with so many of our folks—that they might never have had a hallucination before, and that's the first time. And the question is, well, was it just a response to medication or being in an unfamiliar place? And it might be, but then we want to look at that and see the pattern, and does that happen again in the future? And that tells us a lot about what's going on, and we have to know that that could be part of Parkinson's to then bring that up to the treating neurologist or the treating physician. Right. One of the less discussed symptoms are certain delusions. So, delusions being like a fixed, false belief—a thing that a person keeps coming back to, even though there's no evidence to support it. And there are some really common delusions that can happen in Parkinson's dementia, including kind of this generalized paranoia, people being really suspicious that something's going on, or really suspicious of a particular thing going on. But also they can be very suspicious of their loved ones, so despite all evidence to the contrary—I hear Claire laughing, right—people can be convinced that their loved one is cheating on them, right? And so that happens, and if you don't know that that's part of Parkinson's, who's going to bring that up, right? Because that can be terrifying. So I know, Claire, do you want to speak to that?

Claire Pensyl 9:35

That's certainly the case. There's also a syndrome called Capgras syndrome, where your loved one thinks that you are an imposter and cannot be convinced otherwise. I dealt with that when I didn't know what Capgras syndrome was. I was terrified, and we just had to wait for the moment to pass. The second time I had to deal with it, early one morning, Ira said, "You are not Claire," and I didn't really protest. I said, "I think you've seen the webinar, you know this is Capgras syndrome. I'm going to go have a cup of coffee. I'll be back." I did. As I came back, I announced myself. I came in and sat down, and Ira said, "I'm going to ask you a question that only Claire can answer." And I said, "What a great idea!" And he asked me a question that, yes, only I could answer it, and I doubled over in laughter. He started laughing, and the whole situation just dissolved.

Dr. Jori Fleisher 10:36

And it's such an amazing example. I mean, just to people listening, that is what to do, right? Which is not that everyone can in every moment, but what I hear from that was, number one, you recognized what was going on, and as scary as it is, you were able to stay calm and sort of say, "Okay, I'm going to take a break." Because when these delusions are going on, you can't argue with them, right? The person with Parkinson's brain is telling them this is the truth, this is reality. And so you stepped away, knowing that Ira was safe to do that, right? You stepped out of the room, announced yourself coming back, like, "Aha, this is the real Claire, I'm re-entering," right? Which helps kind of reset things for Ira, and then you gave him that opportunity to kind of double check. I love that.

Dan Keller 11:23

Jory, can you move on and talk a little bit about Lewy body dementia?

Dr. Jori Fleisher 11:28

Absolutely, I think this is one of the most confusing things out there, and we have done ourselves no favors by really confusing naming. So here is how I think about this: what Claire was describing with Ira, what I was talking about before, is really Parkinson's disease dementia, which is where people have Parkinson's symptoms—so the slowness, the stiffness, maybe the tremor, the constipation, all of the other things that can go with Parkinson's—and those are usually present for years, and then as time goes on, we start to notice these cognitive changes. So I think about there's the Parkinson's chicken, and there's the cognitive changes egg, right? And for a lot of people, the chicken comes before the egg, and we call that Parkinson's disease dementia. However, there are other folks who have not read that textbook, and they have those same cognitive symptoms first. So they have changes in attention, concentration, visual perception, decision making, executive function—those things happen first or happen around the same time as they develop movement symptoms. So they get the egg before the chicken, or the egg and the chicken arrive in the same basket. And if you have both the Parkinson's and those specific cognitive changes, when that happens first, we call that dementia with Lewy bodies. But if you've got either dementia with Lewy bodies or Parkinson's disease dementia, those both fall under this very confusing umbrella term of Lewy body dementia. And you might be listening and going, "Didn't she just say the same words?" Yes, she did. They're the same words, scrambled in a different order, hence the egg analogy, right? But we don't need to unscramble this. Essentially, if someone has Parkinson's and goes on to have those cognitive changes, yes, they have Parkinson's dementia, that could also be thought of as Lewy body dementia. It doesn't mean that they have another diagnosis. It's part of the same pathology. These issues share the same underlying changes in the brain. It's a bit of a question of which comes first and where those changes in the brain are happening first, that leads to the different timing of the symptoms.

Claire Pensyl 13:46

Well, the other issue is it's not like you have Parkinson's disease dementia, and then you have dementia with Lewy bodies, you can kind of float back and forth. Basically, Ira had Parkinson's disease dementia, unless he was in a hospital or a skilled nursing facility, and then we would guarantee that his symptoms would move up to Lewy body dementia, and a lot of his problems could be treated. There were medications that could tamp it down, and so that's the important thing to also understand.

Dr. Jori Fleisher 14:20

Absolutely, I'm so glad that you brought that up, Claire, because I think we don't do... Do we have the best medicines that any of us would want to treat this? Absolutely not. And there's a lot of work going on, but there are things that we can use both to help with the gradual cognitive changes to kind of slow things down and put the brakes on a bit, but there are also medicines that we can reach for that are safer than others in those situations. In the hospital, if someone's really agitated, really confused, there are better choices and there are worse choices, and that is an amazing place where we want our care partners to be empowered and educated and to be the shield, if you will, and go, "Hold up. No, no, no, no. You're not going to use that medicine for my loved one. You're going to call their neurologist if you have a question. No, that's not safe. Hold on, right?" And there are amazing resources, or hospital safety guides, from the Parkinson's Foundation. There are amazing resources out there to provide in those situations to emergency rooms, to hospital folks, you know, not because they're trying to do wrong by our people with Parkinson's, but because that's simply just not the expertise and the training that they have. So, as care partners, as caregivers, however folks identify, you know, being part of their loved one's journey with Parkinson's, knowing what to do in a hospital setting, and that you can and should speak up is really critical.

Claire Pensyl 15:44

The hospital safety guide is really helpful. Everyone should have a copy, and everyone should remember to grab it when they're out the door on the way to the emergency department.

Dr. Jori Fleisher 15:54

Yes.

Dan Keller 15:56

Claire, you've, like many people, probably have become an unintended expert in this area, so what other resources did you find helpful?

Claire Pensyl 16:07

The problem really at this point is that there's so much out there that it's just sort of figuring out where the best resources are, and it's also a question of the best resources for you. I sort of see people finding support groups as a means of finding their support network, and if you're out and active and doing exercise and going to support groups, you can look to your right and see someone who's in worse shape, look to your left and see someone who's in better shape—you learn a lot just there. The Davis Phinney Foundation has a fabulous book called Every Victory Counts. It's encyclopedic. It's really helpful, particularly when you're looking at a symptom that you don't recognize. There are an infinite number of recorded webinars on any given topic in Parkinson's. There's a wealth of material; it's finding what works for you.

Dan Keller 17:04

Jory, can you comment on the Persevere study? And then Claire, tell us your experience with that.

Dr. Jori Fleisher 17:11

Of course, I mean, I think Claire set this up so beautifully because she really highlighted that it's not that there isn't education out there for care partners, it's often that there's so much, and it's so hard to know what do you trust, what's been vetted, what applies to my loved one, and how do I even find the time to kind of sort through this and target my learning so that it's practical. And education is wonderful, but education on its own is probably not enough to support our care partners. So we know that compared to care partners for a loved one with Alzheimer's, for example, Parkinson's care partners have higher caregiver strain, burden, rates of depression, of back pain. We know that our care partners need more, and in the past, unfortunately, there have not been a lot of studies or programs that have been shown to really help care partners. So over the last eight to 10 years, and with help from many Parkinson's and Lewy body care partners, Claire included, we've been developing an intervention based on this idea that education is necessary but not enough, and that social support and social connection might be the missing key. And so the Persevere study is actually an NIH-funded, national, entirely virtual randomized control trial. So, if you are in any US state or any US territory—we're looking at you, Puerto Rico and Guam—this is open to you if you are a care partner to a loved one with Parkinson's and any changes in their memory or thinking. This is actually even open to care partners who may have lost a loved one to Parkinson's dementia or Parkinson's and cognitive changes. And what this is, is individuals who are more experienced care partners—they might still be in the thick of it and caring for a loved one, but their loved one has had cognitive changes for at least three years—we recruit them, we train them all online to be mentors to folks who are earlier in the journey. And then to folks earlier in the journey, so their loved one has had cognitive changes for three years or less, those individuals sign up, and all the sign-up is online, and they're randomly assigned to one of two groups. And both groups get 12 weeks of targeted, specific education, exactly like Claire said. There's so much out there, so we scoured the internet—we didn't ask Uncle Google—we actually went to reliable sources and said, "You know what, this is a great resource on hallucinations. This is a great resource over here on caregiver strain. Here's a great resource on how to safely lift your loved one from a bed to a chair so that you don't kill your back." And we put all of that together, and the hope is to see whether pairing up targeted education that really focuses on, like, what do you need to know as a Parkinson's or Lewy body care partner that's actually going to help you and your loved one today and tomorrow, not just in the future, but what is practical, and does that help not only you as a care partner in terms of stress levels and strain and mood and sleep, but does that trickle down and help your loved one too? So we are beyond thrilled to have funding and support for this. We have six amazing care partners who have helped design this study, help us run this study, and advise us every step along the way. And go, "Nope, you're not doing it right. Do it this way. You forgot this thing, you know, include this in the materials that we send to people." And that has made it infinitely stronger.

Dan Keller 20:50

Claire, I take it you were a participant in Persevere. What was your experience?

Claire Pensyl 20:57

I have been both a mentor and a mentee in earlier programs, and as a mentee, it was just one of the best experiences of my life to have someone who was going to talk to me for at least 30 minutes once a week for 12 weeks, where I was the focus. It was, "What are your issues, what do we need to talk about?" It was invaluable. I have to say that the experience extended long beyond 12 weeks, which I think is quite common in this study, and the most important thing, which may sound odd, is my mentor finished every conversation with, "Claire, you're doing great, but it's going to get worse. What are you doing to get ready?" And I can't tell you what a gift it was to have someone say that to me and force me to face forward.

Dan Keller 21:54

Jory, does this study have federal funding?

Dr. Jori Fleisher 21:58

This does have federal funding. So this is funded by the National Institute on Aging, which is part of the National Institutes of Health, and we've been really fortunate. The studies that Claire mentioned that she was part of that led up to this, where we were kind of piloting this idea and seeing if this really worked, were also federally funded. So we are profoundly grateful, not only to the NIH, but to all of the scientists part of the process of federal funding. Other scientists, other researchers are reviewing these grants, often, you know, at two in the morning after they're doing, you know, their other work, to say, "Is this something that has legs? Is this something that makes sense, that this could help people, and is this worth funding with taxpayer dollars?" And so I will never know who my reviewers were, but I offer gratitude out to the universe that they made this possible, because Claire said the feedback, even though we're in the midst of it, the feedback that we have gotten has been so positive, and many people have reached out to tell us, "I was part of that original study two years ago, and I'm still talking to my mentee or mentor two years later," which is tremendous, and really speaks to the unbelievable wisdom and altruism of our care partners. They know so much, they learn so much, and I think we don't do a good job as physicians of recognizing that, of calling that out in the clinic, and going, "I see you. I see that this has got to be really challenging. How are you holding up? What are you doing to take care of yourself? And thank you for everything that you're doing 24/7 to be a support to the person with Parkinson's."

Dan Keller 23:39

And given the number of people with Parkinson's, and the increasing number predicted for the next decades, it sounds like this sort of thing, where you actually can have care at home and be confident that you're doing your best, is vitally needed.

Dr. Jori Fleisher 23:56

It is critically needed. I mean, I think one of the things that breaks my heart every single day in clinic—and I see this as a physician, but I've also lived this as a family member to very, very dear family members with Parkinson's and Lewy body dementia—which is that when it becomes more than any one person can handle, and that's different for every single person, every single person with Parkinson's, every single care partner, right? But everyone reaches a point where they say, "Okay, I need help." And unfortunately, our healthcare system does not have a mechanism to provide paid caregiving in the home. And so for most people, even on Medicare, even most people on Medicaid, even hospice does not include a provision for 24/7 caregiving. So if you need paid help in the home as another set of hands, as a respite, that's usually coming out of pocket, and that is expensive, that is hard to find, and even if you find someone amazing and you have the means to pay for them, they don't necessarily know anything about Parkinson's or cognitive changes or dementia, so the care partner is still kind of playing air traffic control and having to do a lot of the teaching and the monitoring to make sure things are going well. And so I often have to tell people the cavalry isn't coming, right? We don't have a backup plan to send a caregiver to the home, and until that changes—and hopefully it will, write your congresspeople, write your senators—but until that changes, we have this completely untapped, unrecognized wealth of wisdom in our care partners who've been through it. So whether that looks like going to your local support group, or being part of, you know, a Facebook or other social media community, and getting tips from there and validation, right? Or it's participating in something like Persevere, or another, you know, mentoring program, I think whatever that is, being educated, asking those questions, and connecting with other people is going to be critical. I mean, the best life hacks and gadgets and things that I know to recommend to my patients and families daily are always coming from my patients and families daily, right? And sometimes that's something that they read on Facebook or Reddit or saw on TikTok. Share that knowledge. That knowledge, that thing that you found that makes it easier to help a person with Parkinson's get out of a car on their own, that's gold, right? Share that with someone else.

Dan Keller 26:33

Do each of you have sort of a nutshell advice? I mean, one or two very important points that people should keep in mind?

Claire Pensyl 26:42

I've seen people try and do this alone. It just doesn't work. I mean, it doesn't necessarily have to be people who know anything about Parkinson's. If it gives you an hour to learn something about Parkinson's, then that's support, but you need people around you to help you.

Dr. Jori Fleisher 26:59

I couldn't agree with Claire more. This is not a solo job. This is never a one-person job. Parkinson's doesn't affect one person, it affects a family, it affects a circle. So, calling in that extra help, and I think to borrow a quotation that I think is out there online a lot, but know your worth as a care partner. You have so much skill and knowledge wherever you are in the journey with your loved one. You are different today than you were before they were diagnosed. You have learned so much, whether you recognize it or not. And I think taking a moment to recognize that and realize the value in that, and that this lived experience counts not only for your loved one's care, but it counts... It makes you a stronger person, and if there are ways to pay that forward and make it a little bit easier for someone else, you have the potential to do that.

Dan Keller 27:55

Very good, I think this will help a lot of people who are facing the same things. So, I really appreciate the time and all the information. Thanks, Claire and Jori. To learn more about the Persevere study, we included a link in the show notes, or go directly to redcap.link/PERSEVERE1, that's R-E-D-C-A-P dot link slash P-E-R-S-E-V-E-R-E-1 with PERSEVERE all in capital letters followed by the number one. You can also email persevere@rush.edu, that's persevere@rush.edu. For more information on dementia, visit our website at parkinson.org and use our search bar. You'll find a fact sheet, blog post, and much more. Dr. Jori Fleisher and Claire also mentioned our hospital safety guide as a resource during a hospital stay. You can download or order one by visiting parkinson.org/hospitalsafety. Before we wrap up, we want to recognize March as Women's History Month in the US. This month is a time to shine a light on the women who have shaped history, broken barriers, and continue to inspire future generations, including those living with Parkinson's disease or caring for someone who has it. Dr. Jori Fleisher and Claire are a perfect example of two women doing amazing work in the Parkinson's community. At the Parkinson's Foundation, we are committed to ensuring that women, particularly those impacted by PD, have access to the resources and care they need. This month and beyond, we aim to highlight the voices of women, showcasing their voices, sharing their stories and insights on living with PD. For more information, please visit parkinson.org/women. If you'd like to leave feedback on this episode or let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.

Jori Fleisher, MD MSCE FAAN is a movement disorders neurologist and Associate Professor of Neurological Sciences at Rush University Medical Center. She co-directs the Rush Parkinson’s Foundation Center of Excellence and leads the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, CurePSP Center of Care, and Lewy Body Dementia Association Research Center of Excellence. Dr. Fleisher completed her neurology, global health equities, movement disorders, and epidemiology training at the University of Pennsylvania. She has additional training in palliative care, health services and implementation research, and advocacy leadership. Supported by the NIH, foundations, and philanthropy, Dr. Fleisher’s research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the PERSEVERE Trial, a first-of-its-kind entirely virtual, national, randomized controlled trial to educate and empower family care partners whose loved ones have Parkinson's or Lewy Body Dementia. She is a co-investigator on several other national NIH-funded studies, an Editorial Board member of Brain & Life, an internationally recognized speaker, and has mentored over 25 trainees. 

In 2006, Claire Pensyl and her husband, Ira Bell, married, retired, and then loved and laughed their way through more than 15 years of Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia. Both had personal trainers, physical therapists and social workers, and Ira also had neuro-physical, occupational and speech therapists. They participated in person and on Zoom in exercise classes, Rock Steady Boxing classes, dance classes, improv classes, adaptive sailing, clinical trials with at least 4 different clinical teams, Fox Insight and Fox PPMI, support groups and many educational programs on PD, PDD and LBD. They developed a nationwide network of friends in the PD and LBD community. Claire now continues those friendships, is a member of care partner advisor councils for clinical trials at Rush University and the University of Rochester, volunteers for the Parkinson’s Program at Lake Forest Hospital, supports programming and research that benefits people with Parkinson’s, people with Lewy Body Dementia, and care partners now rather than in the future, is preparing to take the enrichment training course offered by the Dance for Parkinson’s program sponsored by the Mark Morris Dance Group and is an advocate for more palliative care for the PD and LBD community. She is grateful for the growth she experienced as a care partner and continues to be thankful for the opportunity to be Ira’s care partner.