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. Apathy can be a component of Parkinson's disease. According to today's guest, movement disorder neurologist Dr. Nabila Dahodwala of the University of Pennsylvania in Philadelphia, apathy has traditionally been defined as a loss of interest or a lack of motivation, but she says it goes beyond that and interferes with making and carrying out plans, whether physical actions, such as exercise, or something requiring attention and cognition, so it can reach into all aspects of life. In this episode, she describes the condition of apathy, how it can affect a person's life, and some strategies to alleviate it and gain motivation to move through exercise. First of all, what's the definition of apathy?
Dr. Nabila Dahodwala 1:36 That is a really good question. So, I think traditionally we thought about apathy as a loss of interest or lack of motivation in doing things, but in fact I think it's probably more complicated, and I like to think of it more as disordered goal-directed behavior. So we all have behavior that's intended to accomplish some goal, and when that behavior is altered, and it can be in a lot of different facets of behavior, it'll seem like a patient or a person is apathetic, and I can break it down for you. So, I think to have normal goal-directed behavior, you need to be able to initiate a plan or a goal. You need to be able to plan it, and you have to have some motivation. It can be external or intrinsic, and it can be positive or negative, but I think you need all three of those facets to accomplish a goal. If there's impairment in any one of those three, I think it can look like you're apathetic.
Dan Keller 2:35 Is one of those reasonable goals self-care in PD? Can apathy get in the way of taking your medication or exercising?
Dr. Nabila Dahodwala 2:44 Oh, for sure. I think apathy can affect any aspect of your life that requires taking care of yourself.
Dan Keller 2:51 Is it different from depression? How would you tell?
Dr. Nabila Dahodwala 2:55 You know, I think there's actually probably a lot of overlap, so when you lose interest and you're feeling unmotivated, it can sometimes go along with feeling sad or hopeless or depressed. It can also go along with feeling fatigued or tired or sleepy, and then lastly can go along with just having a harder time planning your day, having some executive dysfunction, some anxiety, so I think there's a lot of overlapping concepts, but you can also just be apathetic without being depressed, without being tired, or without having cognitive impairment.
Dan Keller 3:34 Can it be an intrinsic part of Parkinson's disease, actually some sort of biological mechanism that's making you apathetic?
Dr. Nabila Dahodwala 3:42 Oh, I think it is. I mean, not always. It can be, but I think part of Parkinson's is that your movements are slower, but also your thinking can be slower, and your behavior can be slower. It's harder to plan a movement. It's also harder to plan an activity. It's harder to get started with something. I think it's really easy to think about it when you're thinking about movement, like it's harder to take the first step or to reach for an object, but it's also harder to initiate a behavior that's a cognitive behavior, not necessarily a movement. But that being said, it's not all the Parkinson's biology. I mean, I think it's important to look at other medications that you might be taking that might kind of change your behavior, other social stressors that might be going on in your life, but I do think the Parkinson's disease itself is a part of what causes apathy.
Dan Keller 4:35 How can it be approached or treated?
Dr. Nabila Dahodwala 4:38 That's a great question. So, I will say we don't have any approved FDA medication for apathy, but if we think about what are the underlying drivers of apathy, if there is underlying depression, we can treat depression. If there is underlying cognitive impairment, thinking about having a structured day and understanding where and how executive dysfunction is interfering with you achieving your goals can help you kind of develop some strategies to address it. You can try medicine. I mean, we can sometimes actually, dopamine itself can help with initiating movements and initiating behaviors, it can help with your speed of movements and getting through something that might be a more challenging endeavor, so sometimes just regular Parkinson's medicine changes can help. If it's like a wearing off symptom, like when your medicines are off, you're more apathetic, then definitely adjusting your medicines is a good idea. And then sometimes it's a little bit of trial and error with trying different antidepressants or stimulating medicines to try and help you improve your behavior.
Dan Keller 5:49 Can antidepressants be actually detrimental in some cases?
Dr. Nabila Dahodwala 5:54 Antidepressants can sometimes make people feel a little flat, they sometimes can make people feel tired, so you have to make sure that the antidepressant is doing the job you want it to. Not all antidepressants are the same, and so, you know, if one doesn't work, it's worth trying a different one. Some can be a lot more activating, some can help you stay awake during the day, and some can really help improve your mood, which will ultimately help you feel less apathetic.
Dan Keller 6:23 You did a study on goal-directed behavior. Can you just briefly tell me what that was about and what you found?
Dr. Nabila Dahodwala 6:30 I've done a few studies. One was to try and measure goal-directed behavior. So, I think a lot of the studies of apathy have just asked people their symptoms or care partners whether they think they feel apathetic, and I think that has some limitations. So, if you have not a lot of insight into what's happening, you might not be able to report that those symptoms are ongoing. If the caregiver is under a lot of stress or burden, they might over-report symptoms when it may be really the motor symptoms of Parkinson's disease that they're observing, so I wanted to try and objectively measure behavior based on how people performed on different tasks. So I tried to measure how quickly they initiated a behavior. If we made the task more complicated and involved more planning, we wanted to see if that maybe slowed people down, and then we added in different indicators of motivation. People would get money if they performed well, or there would be a penalty, like they would lose money, and in that way we developed a tool that could measure the different components of goal-directed behavior to see if a patient was apathetic. And then I took that tool and applied it to a group of people with Parkinson's, and at the same time implemented an intervention to try and get people with Parkinson's to exercise more than they were before, and then I tried to see if these different components of goal-directed behavior influenced how they responded to the intervention. So the intervention was this kind of social incentive, like a game where people wore a Fitbit that monitored how much they were walking, and then they had a goal for each day for how much they should be walking. They worked as a team with a partner, and if their team met the goal for the week, they moved up a level, and if they didn't, they moved down a level. And for any one day, one member of the team represented the team, so you got like some days off, if you weren't the team representative, it was okay if you didn't meet your goal for that day, but you could encourage each other, and you get reminders through your phone if you met your goal or not, and to remind yourself to exercise for that day. What we found is having that infrastructure and incentives in place and reminders for exercising did help people exercise more. There were specific impairments in the goal-directed behavior that suggested you would do better. It basically worked for everyone, which was good news, but it wasn't like if you had problems with motivation, you were more likely to respond, as opposed to someone who might have problems with initiation.
Dan Keller 9:16 Did that carry over into daily life, or it only worked within the study and those parameters?
Dr. Nabila Dahodwala 9:23 So that's a great question, because I don't know. Through the study we only followed people for six weeks, so I think what I'd like to do in the future is to see what's sustainable and how can we build in this type of infrastructure for everyone anyway. So, with that not within the confines of a study, there are some apps out there, fitness apps that do this for you, that have reminders for exercising, that will give you rewards if you meet different goals that you've set, but I think what helped, in addition, in this study was that it was in the context of their clinical care, and so I think the messaging that people were getting were from us, and they felt that the doctor and the medical team was really invested in their care, and it was the medical treatment, just like taking your medicine every day, it was just as important to exercise every day, and they were getting that importance of it because we were so involved with communicating with them about exercise.
Dan Keller 10:24 Short of those motivating factors built into this, it seems like apathy in itself would be a barrier to exercise. Exercise is good for you, but how do you accomplish it if you're apathetic?
Dr. Nabila Dahodwala 10:38 Yeah, no, it's the hardest thing. It becomes a vicious cycle. If you're not exercising, you feel worse, you can feel depressed and apathetic, and then it's even harder to exercise, which we know is good for people with Parkinson's disease. So, I think really breaking it down and making it more manageable. So, I think starting with a very small amount of exercise a day, like maybe five minutes a day, bringing in a partner or a friend or a relative to also exercise with you, or like the way that our study worked, people signed up in teams, so there's someone else also invested in this, they're also exercising, and you can do it together if you live near each other, or at least you don't even have to be together, but you can see what the other person is doing and kind of work together as a team. I think giving yourself rewards for exercising—you know, through some of these studies people sometimes get paid, but I think think about like what's important to you and what after having exercised give yourself a treat for doing it—and I think scheduling it into your day is really important. It needs to become like a routine, just like you brush your teeth every day and take your medicine every day, you exercise every day, and it can be, like I said, as little as five minutes, although a goal would be 30 minutes a day with a mix of cardio, strength, and balance training in there. But I think starting small and working up, so it doesn't seem so overwhelming that, oh, I have to exercise at least 150 minutes a week, which sounds like a lot, but if you start breaking it down and make goals for yourself, you can slowly chip away at them.
Dan Keller 12:18 So it sounds at this point in a practical sense, outside of a study and outside of a therapeutic intervention, peer encouragement, peer pressure might be the motivating factor.
Dr. Nabila Dahodwala 12:32 There's a lot of study of behavioral health economics, like how do we actually change behavior, and this is in all people, not specifically people with Parkinson's, who are different, because they might have impaired motivation or impaired ability to move well, or cognitive impairment, but if you take everyone together, financial incentives are very compelling. Social incentives, like peer pressure, are also compelling. Making it fun, like making it a game, can help keep people motivated and exercising, and then I think we have to think specifically about people with Parkinson's and personalize it for you specifically with Parkinson's and what you're facing. How can we build in exercise into your day, and it should always be fun.
Dan Keller 13:19 What kind of effect would one's apathy have on family care partners, friends?
Dr. Nabila Dahodwala 13:27 For sure, when a patient is feeling apathetic, it affects the people around them, and oftentimes, especially partners who may be living in the same house with them, spouses, adult children, family members, they often express feeling a lot of strain or burden because they're more responsible for the other person, or they're worried about the other person, or they're not able to do the things they used to do together as a couple, and so I think it's important for those partners to also take care of themselves, to find moments where they can spend time with other family and friends, get breaks. Also, they should be exercising. I mean, everyone really should be exercising, not just people with Parkinson's disease. So, just, it's important for care partners to also be supported in this journey with Parkinson's disease.
Dan Keller 14:21 Is there a message in a nutshell for people who have apathy, or people living with people with apathy?
Dr. Nabila Dahodwala 14:28 I would say, in a nutshell, it is very hard to start exercising if you haven't been exercising, but once you start, you're going to feel better. It's going to feed into itself, then once you're exercising and feeling better, it's going to be easier to keep exercising, and you're going to feel more motivated and less apathetic. So, I think that's like starting with the small goals will help you get to the bigger goals.
Dan Keller 14:54 Great, thank you. Bye. And for more information, search our website at parkinson.org for apathy. If you click on the heading apathy, you'll find an overview of the subject, tips and techniques for coping with it, a link to a fact sheet on apathy and PD, and a link to a free book called Mood: A Mind Guide to Parkinson's Disease. You'll find these resources and more, such as the Parkinson's exercise recommendations fact sheet and infographic, by visiting parkinson.org/library. There are also a few related blog posts. You may also want to listen to a past podcast called Using the New Parkinson's Exercise Recommendations as Part of Your Treatment Plan. Just go to parkinson.org/podcasts and scroll down to find it. As Dr. Dahodwala said, exercise can be very helpful in relieving apathy, and it can be divided into small increments with a goal of getting 150 minutes a week—that's just 30 minutes a day, five days a week, or about 20 minutes every day. Even there, five or 10-minute increments of moderate exercise a few times a day is a good way to start and can add up. And speaking of small increments, one way to get motivated to plan and work toward a goal is to break the task into small parts. It's easier to deal with a single gentle wave than a tsunami of work. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series 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 other week. 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.
