Expert Briefing: Depression and PD

Dr. James Beck 0:00:02
Welcome to the second talk in the Parkinson's Foundation's ninth Expert Briefing series. Today's topic is Depression and Parkinson's Disease: Treatment Options. I'm your host, Dr. James Beck, and I'll be leading our discussion today. I'm pleased to let you know that we have over 1,230 people registered for today's talk with our discussant, Dr. Dobkin, from 21 different countries.

I also want to let you know that these webinars are not created in isolation, which is why I'm very pleased to announce that this series has been designed in collaboration with our partner organizations, who are members of the Alliance of Independent Regional Parkinson Organizations, or AIRPO. I would like to also acknowledge our sponsors for this series: AbbVie, Sunovion and Lundbeck. Without their generous support, these webinars would simply not be possible. Thank you very much.

For those of you who would like to gain access to the PowerPoint slides, those can be downloaded on the viewing page that you're looking at right now. Look at the bottom left for the Download Slides link, and you can download a PDF file at any time during our webinar today. If you're a health professional who's listening in, you can earn one free CEU through the American Society on Aging. If you registered as a health professional and indicated you would like a CEU, you will receive an email by the end of today with steps on how to collect your free CEU. You have just 30 days, so that's until December 21, to collect that CEU.

I also wanted to give a shout-out to our Ohio chapter, which has a group viewing going on right now. Hello, everyone there. It's my distinct pleasure to welcome our guest speaker for today, and that's Roseanne Dobkin, PhD. She's an associate professor of psychiatry at Rutgers, the State University of New Jersey Robert Wood Johnson Medical School. She's also a practicing psychologist who has a practice in both New Jersey and Delaware, and her research and clinical work focuses on the treatment of psychiatric symptoms such as depression, anxiety, insomnia, cognitive issues and Parkinson's disease non-motor issues.

She's really looking for ways to help people with Parkinson's disease and their families cope with the disease itself. I will turn it over to Dr. Dobkin now. Thank you very much.

Dr. Roseanne Dobkin 0:02:15
Well, thank you. Thanks for the wonderful introduction. I am thrilled to be able to spend the next hour or so with everybody on the call.

Just as some introduction and background to our topic for this afternoon, we all know that depression is common and negatively impacts quality of life and health outcomes in Parkinson's disease. But here's the good news. The good news is that depression, anxiety and a lot of these neuropsychiatric complications are aspects of the medical condition over which you have control. Nobody listening in had any choice in the diagnosis. Everybody has every choice in the coping response.

My job over the next 30 or 45 minutes or so, before we take questions, is to empower each and every one of you with the information and the skills that you need to go out there and to live a good life today. I will preface this by saying that all of the tools that I'm going to give you today are going to require you to be an active and oftentimes a very proactive participant in your own self-care. We can't phone this one in. This is not just going to be good cocktail party conversation, but I really am going to try to outline a series of actionable steps for each and every one of you to begin taking today.

An analogy that I like to offer, because people can really relate to this and understand, is if you go to your neurologist and you're complaining about tremor, increased stiffness or increased difficulty walking, and the neurologist says, "Okay, I hear your concerns. Let's increase your Sinemet a little bit and see how you do with that." If you go to the pharmacy and you fill the prescription, and you come home with a new bottle of medication and you stick it in your medicine cabinet and you just look at it, but you never actually swallow the pill, it's not going to help you. Your tremor, the stiffness and the other physical symptoms aren't going to improve.

The same thing goes for some of the techniques that we're going to be discussing today. You could develop the most sophisticated knowledge of coping skills for depression and Parkinson's disease after our presentation, but if you don't find a way to implement them on a regular and daily basis, they're probably not going to help all that much. Just like you wouldn't fill a prescription and then stare at it in the medicine cabinet, I don't want you to soak up all this interesting information from today's talk and then just kind of think about it and mull it over. We really want to start implementing it in the day-to-day so that we can see meaningful change.

I'm going to need somebody to push the slides because it's not advancing for me. Can we go to the next slide?

Dr. Roseanne Dobkin 0:05:05
I'm going to be talking about coping skills today in the context of the cognitive behavioral therapy model. Cognitive behavioral therapy is an evidence-based approach for treating depression and anxiety in other populations, and I have done a lot of work, both clinically and as far as research, in terms of figuring out the best way to implement cognitive behavioral therapy techniques in my work with people with Parkinson's disease and their family members.

As I'm going to highlight throughout the rest of the presentation, cognitive behavioral therapy, kind of like it sounds, targets thoughts and behaviors that are related to the onset and maintenance of negative emotional states like depression. It's very skill-based, and in my experience, it's very suitable for enhancing effective coping and the treatment of depression in Parkinson's disease.

We should be on slide number three now with the model. We're going to be talking a little bit about the CBT model and the multiple interacting causal factors that are implicated in the onset and the maintenance of depression. The CBT model proposes that there are many things, not just one thing, not just one factor, that interact to both cause and maintain depression. While it's pretty well recognized that there are biological factors that may play an important role in the onset and maintenance of depression in Parkinson's disease, the biology is far from the only actor in the play.

How we think about things, the meaning that we make about what's going on around us, the interpretations of the day-to-day, all influence how we feel. Our thoughts influence how we feel. What we do, what we don't do in response to the life stressors around us, also has a huge impact on how we feel. All of these factors, our biology plus our cognitions plus our behaviors, what we're doing or not doing, all influence one another, and intervening anywhere in that cycle can help.

Since I'm a clinical psychologist and I work with people using non-pharmacological or non-medication methods to help enhance mood, for the purposes of our conversation today, we're going to be talking about ways to intervene in that behavioral and cognitive bubble that you will see on the diagram. I always tell people I love to create these visuals and these diagrams to tell a story, but I'm not an artist, so the bubble diagram is the best I can come up with. I think it illustrates the points.

Again, we want to be thinking cognitively. How can we make changes in the way in which we think about what's happening to us, the way in which we think about Parkinson's, the way in which we think about its impact? And how can we make changes behaviorally in terms of what we're doing or not doing in response to the challenges that we're facing on a day-to-day basis?

Dr. Roseanne Dobkin 0:08:22
Now I'm on slide four. I want to give everybody a flavor of some of the interventions that I might review, some of the interventions that I might work with as I'm sitting down one-on-one, addressing depression or other related psychological concerns for a person living with Parkinson's and/or their family members. When I think about starting, I always like to start in that behavioral bubble and really zero in on what are we doing or not doing to enhance our coping efforts. How can we make things better, more effective? How can we make it easier to get through the day?

One of the first places I like to start is: can we think creatively, can we think strategically about increasing our involvement in meaningful activities, in social activities? When I say increasing involvement, I absolutely don't mean being busy for the sake of being busy, because that's not pleasurable. That's just stressful, and that doesn't help anybody. But it can be really helpful for people to set realistic and reasonable goals for each day and to really think about allowing the goal to guide the behavior rather than that negative emotional state that might be lingering.

The reality is, if we're feeling somewhat sad, if we're feeling a little bit anxious, we tend to be more controlled in those moments by our emotions rather than by the facts of the situation, rather than by what might be good or healthy for us. If we can temporarily suspend judgment on what we feel like doing or don't feel like doing in a given moment, but focus more on our goals, it can be incredibly helpful.

When I work with people to establish goals, I tend to think in three main areas. Not to say that these are the only three areas, but I think they can be important areas as a starting point. The first area that I always zero in on is exercise. In my ideal setting, there would be an exercise goal every day. It doesn't have to be going out and running a marathon, but it could be walking for 15 minutes. It could be doing tai chi or seated exercise or practicing the BIG program and all of those Parkinson's-specific physical therapy exercises that you've learned on a regular basis at home.

I love to see everybody with an exercise goal for the day. I love to see folks establish a social goal for each day. By social, I don't mean hosting a dinner party for the entire neighborhood or taking your best friend to the opera. A good social goal for somebody who's feeling depressed, maybe feeling a little bit more isolated, might be to answer your phone when it rings rather than allowing it to go straight to voicemail, making it a goal to respond to your emails within 24 hours, or to just say hello and goodbye to the barista at Starbucks that's giving you your coffee. Something that's going to increase that sense of social connectedness with the folks that you are interacting with on a daily basis.

We've got our exercise goal, we've got our social goal, and the third area I like to tap into is what's self-soothing. What helps people just feel good, to feel comforted? Maybe it's a cup of hot tea at the end of the day. Maybe it's a soak in the tub. Maybe it's listening to Billy Joel or Elton John. But what feels good, and what can be prioritized just because exposure to that activity is going to likely lead to a positive emotion for you?

Dr. Roseanne Dobkin 0:12:02
When we think about goals, we want to think exercise goals every day, social goals every day, and something that just feels good, something that's going to be self-soothing and therapeutic. The goals should be small. They don't have to be lofty changes, but they should represent an improvement in addition to what's already going on in the day-to-day.

If somebody's in a place, in a position where they're feeling more down and out, where they're feeling more anxious, we need to shake things up. We need to make changes that are going to alter the landscape of the day. They don't have to be huge, but they need to be meaningful. Again, if we think about exercise, social connectedness and increasing exposure to activities that help us to feel good about ourselves, that help us to feel comforted, that help us to feel satisfied, then we're moving in the right direction.

Sometimes people will say to me, "Oh, Dr. Dobkin, this sounds wonderful, but I don't have the foggiest idea what to do. I don't know what changes I want to make, and I don't even know how to go about starting with making change." I like to keep people in three areas in response to that question. Usually those three areas are as follows. Are there things that you used to love to do that maybe fell off the radar for no good reason that we can start to reintroduce? Are there maybe new activities that we can bring into your daily repertoire to maybe replace some of the old activities that might not be feasible or realistic, given some of the challenges that Parkinson's might be creating for you? Or can there be a modified way to engage in something that was once meaningful and might still be meaningful if we can just figure out a unique spin so that that one enjoyable task or endeavor can still be reasonable, can still be feasible, given the changing nature of Parkinson's?

When I talk about thinking outside of the box, or sometimes we have to build a better box, I like to share an example of my friend Howard, whom I worked with many years ago, probably ten or twelve years ago at this point. Howard had been a career firefighter and came to me for some psychotherapy about five years into his Parkinson's diagnosis because his symptoms had progressed to the point where he could no longer go out and respond to calls and fight fires. He became very depressed and very withdrawn.

Even though the local fire department was not only his profession, but also his family and his sense of social connectedness in the community, he had completely cut off ties with the entire establishment because he was so down and out. He just wasn't able to go and work with the organization in the way that he had historically done, which was riding on the truck and running into burning buildings, which just wasn't feasible anymore.

Over time, what we did in the course of our work together is we began to systematically test out new and different ways that Howard could still remain connected, could still remain invested, could still contribute to his local fire department, but that wasn't running into burning buildings with a hose trying to put out a fire. Over a period of about six to nine months, what Howard gradually began to do was he agreed, largely as an experiment, to say, "Oh, Doc, I'll go and do it, and then I'll come back and tell you that you were wrong."

Dr. Roseanne Dobkin 0:16:05
He's like, "Okay, on Saturday night, when they're all getting together for chili dinner, I'll go once and I'll see what it was like." So he went, and the good news was it wasn't as horrible as he thought it was. So he went back. In addition to getting together with the fire department and all of his friends there for the chili dinners on Saturday night, then he started going to the Thursday night trainings where they would practice some drills, but then they would just hang out and shoot pool and have some drinks. He found that to be enjoyable.

Then one day he decided, "Well, they've got a big volunteer initiative planned next week, and maybe I'll just go and I'll help collect some of the cash that may be floating in that day." He gradually began to connect in alternative and different ways with the fire department. Over the course of nine months, Howard moved from a position of being completely withdrawn and disconnected from involvement with this firehouse to not only helping collect funds for fundraising efforts, but actually spearheading all of the local fundraising efforts for that local firehouse.

What Howard came to recognize over time was that even though he couldn't literally and physically ride on a fire truck and run into a burning building, there were still many, many, many important and meaningful ways in which he could make a contribution to that fire department and to his unit. He wasn't running into burning buildings with a hose, but he was continuing to offer friendship and support to his colleagues that were. He was spearheading fundraising efforts such that the local department could raise the money that they needed to do the good work that they were doing in the community.

I'll just share with you that when Howard took over as the chair for the fundraising committee, his first independent campaign raised over fifteen thousand dollars, which was really significant for that community. What Howard came to recognize was there were many different ways that he could stay connected. There were many different ways that he could contribute and make a real difference, an important difference, even if it wasn't about keeping the blazes literally under control.

Again, we want to think outside the box. Can we reintroduce old activities that have sort of fallen off the radar for no good reason? Can we find new activities to replace old ones that aren't feasible? Or can we find creative ways to modify what's really meaningful for us so that we continue to contribute to our lives and to our families and to our communities? It's not about doing more. Sometimes it's about doing less, but it's about making smart choices.

We want to increase our involvement in activities that are going to help us to feel good about ourselves, that are going to help us to feel productive, to feel satisfied. Sometimes it's trial and error to figure out what that's going to look like or how that's going to play out. Oftentimes it might also mean that we have to problem solve around the physical limitations that we're experiencing. We may need to pace ourselves in a different way. Yes, we want to have goals, but they need to be appropriate and not super rigid. Maybe we need to plan around our off time.

There's going to be certain times of the day where it might be more reasonable to engage in goal-focused behavior, and other times of the day when maybe we know our medication historically doesn't work as well, where we want to focus on more calming or more self-soothing activities. We can always break up our activities. If you can't walk for 30 minutes at a time, maybe you can go out and walk for 10 minutes three times a day. Always follow through also with all of your referrals for PT, for OT, for speech, because following through with all of that multidisciplinary care is a very important, very effective way to take control and to be empowered in your own self-care.

Dr. Roseanne Dobkin 0:20:20
Now we're going to go to slide five. Some additional examples: when we experience depression in the context of Parkinson's disease, it's often common to also experience anxiety. There are a lot of wonderful non-medication approaches that are available for managing anxiety: different types of breathing exercises, muscle relaxation techniques, mindfulness-based approaches. If you were to go on Dr. Google and do a search, you could probably come up with dozens upon dozens upon dozens of recordings for different relaxation and mindfulness-based techniques.

I usually recommend to folks, take ten minutes once a day, or ideally twice a day, and practice some meditation. Practice some controlled or some paced breathing, because what that will do is it will help to keep that baseline level of anxiety lower so that you can more appropriately respond and react to the challenges that the day may be presenting for you.

Visualization is one of my favorite anxiety management approaches. The idea behind visualization is to pick a scene, pick an image. There's no right or wrong, but anything that kind of rings true for you. Pick a place that's associated with calm, with tranquility, with relaxation. Maybe it's the beach. Maybe it's the mountains. Maybe it's the hot springs. Maybe it's sitting in your kitchen with a piping hot cup of coffee, smelling cinnamon buns in the oven.

Whatever your calm, pleasant, relaxing scene is, close your eyes and get all your senses involved. Allow yourself to escape there for 10 or 15 minutes at a time, really thinking through what it would be like to be in that moment. What would you see? What would you hear? What's the temperature in the room? Get all of your senses involved to really create in your mind an experience that's associated with calm, that's associated with relaxation.

Experiences and mental images that are associated with calm and relaxation are completely incompatible with feelings of worry and tension and apprehension and anxiety. This is where we have the power to really exercise and exhibit that mental control to bring our minds, to bring our bodies from a place of anxiety and hyperarousal to a place of calm. Visualization is just one of several techniques, but there are muscle relaxation exercises, there are breathing exercises, there are meditations out there. I would encourage everybody on the call to do some research, look online, check out some self-help books from the library, and experiment with some different techniques that may be self-soothing, that may be calming for you.

Dr. Roseanne Dobkin 0:23:25
It's also important, if we want to think about overall calm and sense of inner peace, that we really focus on our sleep habits. If you're having a hard time sleeping, I would encourage everybody to try to come up with a more consistent sleep pattern or routine. In general, going to bed around the same time, getting up around the same time, give or take. You don't have to be watching it to the second, but in general, maybe you have a schedule where a person might go to bed, whatever works for them, around 10 and they get up around seven every day, and that's kind of a set schedule.

You want to limit being in bed during the day for long periods of time, or laying in bed unable to sleep for long periods of time at night. As a rule of thumb, if you're in bed and you're having a hard time falling asleep, give yourself 20 minutes, a half an hour. If you can't fall asleep, get up and go do something else in another room until you start to feel tired, and then come back to bed and try again in terms of falling asleep. What we don't want to do is associate being in bed with being awake. We want to associate being in bed with getting restful sleep. Sometimes there are sleep behaviors that may be more conducive to sleep versus others.

Now we're going to go to slide six. Slide six begins to talk about some of the cognitive interventions, some of the ways in which we can start to take control, not just over what we're doing or not doing in terms of our activities, in terms of our meditation, in terms of our sleep schedule, but where does our mind go? Where do we allow our minds to go in the context of the day-to-day? The reality is, every single one of us, we're constantly thinking. We're thinking all the time. But most of us, myself included, don't really stop to think about what we're thinking about, unless we're primed to do so.

Dr. Roseanne Dobkin 0:25:20
One of the most important non-medication cognitive-based techniques that we can really focus on is becoming more aware of our thoughts. Learning how to take out that mental remote control, just like we see in this little cartoon on slide six, and kind of press pause on some of that dialogue that's spiraling and spinning through our mind. Pause it. Think about it a little bit more carefully. Rewind it and then maybe replay it in a more balanced, healthier direction.

The reality is when people become depressed, when they become anxious, those thoughts that they are having in response to daily stressors tend to be very much skewed to the negative and tend to make coping with all of the challenges that Parkinson's presents even more difficult, and we want to make it easier. We don't want to make it harder. Sometimes a key step to making it easier is to really take a closer look at our thoughts and figure out, hmm, is the way I'm thinking about this as balanced as it could be, as accurate as it could be? Or maybe is there a way I can gain some better, some healthier perspective on the situation? There are dozens of techniques that we can use once we freeze-frame that thought to try to think about it a little bit more deeply, and I'm going to go over just a few with you.

Now I'm on slide seven. Oftentimes the first step to changing the thought, or to at least examining it more closely to determine, is there a place or a point of intervention here, is to catch the thought. For some people, just either writing it down, using voice to text, sharing the thought with a loved one, keeping it in a journal, just the process of putting pen to paper can allow them to separate themselves somewhat from the thought and to recognize, okay, I'm thinking this. This is an opinion, but just because it's running through my mind doesn't necessarily mean it's the absolute truth. Maybe I need to take a somewhat closer look before I make assumptions, before I plan my day around this idea that my thought is the absolute truth.

On slide seven, where I provide this thought log example, these are real-life, specific stories that a lot of my previous clients with Parkinson's have shared with me. This kind of gives you the flavor of what thoughts might sound like if a person is feeling more depressed or anxious. This first example comes from my friend Doris, who was feeling really depressed and was out one day doing volunteer work. She was telling me how she was working with these inner-city kids in her mentoring program, which had historically been really valuable for her, but in that moment, she was feeling really helpless when she was tutoring and mentoring. When I said to her, "Well, Doris, tell me a little bit about what was running through your mind. What were you saying to yourself?" She was able to very clearly express that she was thinking that she's not capable of contributing and that her life was meaningless. Those were the thoughts that were feeding into the negative emotion of hopelessness.

Again, in the cognitive model, it's not the situation per se that leads to the emotional reaction. The situation provides the context. That sets the stage. But it's the meaning, the interpretation of the situation, that ultimately guides our emotional response. For example, if Doris were to say to herself when working with the challenging adolescent population, "This is a really tough crowd today, but just by being here I'm making a difference," then she probably wouldn't have been feeling as hopeless. But because she was saying to herself, "This is meaningless and I can't contribute," she was feeling quite hopeless.

Some other examples that have been shared: my friend Sandy, not invited to lunch with colleagues one day, was feeling depressed, and the thought that she was having is, "My Parkinson's makes my friends uncomfortable." My friend Bob was one day thinking about going to a party and reported feeling anxious and scared, and the thought that he was having that was related to the anxiety was, "It'll be horrible if people see me shake." Again, it's not the invitation to the party, but it was Bob's interpretation of what might happen that was leading to the anxiety. If Bob were to say to himself, "It might be great to meet new people," there might still be some apprehension, but he probably wouldn't be experiencing as much anxiety as he was in response to the thought, "Oh, it'll be horrible if people see me shake."

The first step to looking at the thought a little bit more closely to see if there's room to balance it out is to catch it. To really check in with yourself: what's running through my mind? Why is the situation bothering me so much? What does this mean to me? Why is this so bad? Those might be some questions that you could ask yourself to help to figure out not only what you're feeling about something but what you're thinking about it.

Dr. Roseanne Dobkin 0:30:40
Now as we go to slide eight, another little cartoon. We need to figure out, once we pause our thoughts, are they balanced? What would a jury of your peers decide? If you were to share your thought, your impression, your appraisal with loved ones, would they agree necessarily? If you were to poll people online, would they agree necessarily that the way in which you were thinking about something was the only way to be thinking about or interpreting that situation? Or might there be other angles? Might there be other perspectives? Because again, I don't necessarily want people to think more positively about what's going on around them, but we want to make sure our thoughts are factually based. Having overly optimistic thoughts is probably going to be just as detrimental as having very pessimistic thoughts, but we want our thoughts to be balanced. We want them to be in perspective so that they don't impede our coping efforts and so that they help to actually facilitate healthy coping.

Again, this can be a little bit more abstract because we may all recognize that increasing exercise can be good for us, but it's a little bit less clear that maybe at times we also need to stop and think about what's running through our mind and figure out how we can make changes in that area. Now I'm on slide nine, examining the evidence. As I mentioned earlier, once we freeze-frame our thoughts, there are so many different techniques, so many different methods that we can use to look at the thought more closely to say, hmm, is this as true as it feels? Or is the thought maybe guided more by my emotion in this moment rather than by what's going on around me? Examining the evidence is one of several techniques that we might be able to use to test out a thought.

I love to share this example because it's so powerful. This example comes courtesy of my friend Bill, who I've known for years and years and years. Bill has more advanced Parkinson's disease and has been experiencing problems freezing, a lot of off time, a lot of dose failures, things along those lines. One day he came into the office, and he was just looking horribly depressed. So we started to talk through what had recently happened that was having such a negative impact on his mood. He's like, "Oh, well, Roseanne, had another really bad night last night. I got up, as I always do, 3 a.m. to run to the bathroom, and just as I finished washing my hands and was about ready to return to bed, I was frozen, and I couldn't move." He said that he couldn't help but view himself as helpless in that situation.

I said, "Well, tell me about it. What happened next? It's 3 a.m. and you're in the bathroom. What did you do?" And he said, "Well, like I told you, Roseanne, I was totally helpless. I couldn't do anything." I said, "Well, it's 11 o'clock the next day and you're on my couch, so something has happened between 3 a.m. and 11 a.m. this morning. Tell me what happened. How did the situation play itself out?"

What Bill was able to share, which was actually quite creative, because he had been freezing, because he had been having a lot of fluctuations and dose failures, he never went anywhere without a cell phone. He had his cell phone around his neck. What Bill actually did in this situation was he called his wife with his cell phone on the home phone, woke her up. She got up, went to the bathroom and helped him back to bed. Once we talked through it and examined the evidence for this idea that he was helpless in the bathroom in the middle of the night, what Bill came to realize was that yes, it's true, he was unable to physically move his feet in that moment, but he very much helped himself out of the situation. He was creative. He thought ahead. He planned in advance. He knew exactly what to do. He was empowered. He took control. He called his wife, and together they were able to get him back to bed.

We looked at, okay, what facts support this idea that you were helpless? What facts maybe suggest that that isn't so much the case? And if we look at the big picture, in totality, might there be a more balanced way to view yourself in the context of what happened last night? He was able to recognize after talking it through that he actually wasn't helpless, but he was quite empowered, and he really was able to take charge, to take charge and really enact meaningful change for himself in that moment. Examining the evidence can be, like I said, one of several techniques, but it can be quite helpful.

Dr. Roseanne Dobkin 0:35:27
As slide 10 shows, a behavioral experiment can be another effective method that we can use to test out a thought. Oftentimes if a person, if we're depressed, if we're anxious, we're making a lot of negative predictions. We're expecting worst-case scenarios. Things just aren't going to go right. There's going to be a bad outcome. Most of the time, the outcomes that we are predicting, if we're feeling really depressed or really anxious, might not be as accurate as we think that they are. Again, not that I want people walking around pie in the sky, always anticipating best-case scenario, but we want to anticipate what's the most realistic outcome, right? Not the best-case scenario, not the worst-case scenario, but what's in the middle? And how can we plan for that?

Oftentimes again, if we're emotionally not in the best place, we're jumping to conclusions and we're assuming the worst possible outcome. We want to work to fight back against that tendency. The great thing, if I had to find the great thing about negative predictions, is that we can test out predictions. We don't have to necessarily accept that they're true. Oftentimes we can do something to actively explore, is this prediction true? Is it as accurate as it feels? Or maybe it's a little bit off.

Here's another example from another old-time friend of mine that was very anxious, very much avoidant, very much kind of checked out from life because they were so concerned about what it might be like to have symptoms in public. The prediction that was made was that it would be impossible, not hard, not difficult, not requiring modification, but they were thinking in terms of impossibility. It will be impossible to have dinner in a restaurant because of my tremor.

Finally, I got them to agree, well, let's do an experiment. Again, let's test this out and let's see what the outcome is. If I'm wrong, you can come back and I will listen to "I told you so" for the entire hour that you're in my office. But let's just see what happens. So we did some planning, we got the family involved, and we decided, okay, maybe a good experiment to test out this idea, to test out this assumption that it'll be impossible to have dinner in a restaurant because of tremor, would be let's go to the Olive Garden, six o'clock Saturday night. There's going to be people there, but it's not going to be as crowded as it might be at seven or eight o'clock, when everybody comes out of the woodwork to go out to dinner. Let's just see what happens. If it's terrible, you never have to go back.

We planned for going. Again, I'll have to say, I was pretty sure that this person would be able to successfully go and have dinner in a restaurant because I knew them pretty well. But he was telling himself that he couldn't. He was telling himself that it would be impossible. It was a really nice behavior that we could test out and evaluate the outcome to see if that outcome matched that expectancy. What ended up happening was they went, they ordered food that didn't need to be cooked, they got a straw and a lid for their Diet Coke, and really liked getting out of the house. That negative expectancy, I cannot do it, it will be impossible, it will be a disaster, did not play out.

The only way that we were ever able to really determine that that negative outcome wasn't going to play out was to test it out and to allow life to give us the experience that showed, hmm, maybe things aren't always going to be as bad or as unmanageable as I fear that they might be. If you're making a negative prediction and it's amenable to testing it out in a safe way, I challenge each and every one of you: test out those predictions. After you test it out, compare the outcome to the expectancy and let's see how we do.

Dr. Roseanne Dobkin 0:39:23
If we flip to slide 11, I think this summary sheet kind of highlights the spirit behind the cognitive component of treatment. We want to take a negative thought, we want to freeze it, we want to use some type of intervention. Maybe we're going to examine the evidence. Maybe we're going to do an experiment. Maybe we'll do something like examining the cost and benefit of the thought versus changing the thought. Maybe we will act the opposite of the thought and see what that feels like. But we're going to freeze-frame that negative thought, pause it, and then do something to look at it more closely to see if we can then bring ourselves from a pretty skewed negative thought to a place of balance, to a place where we can achieve a healthier mindset and just better overall functioning.

Some examples again of real-life thought transformations would be freezing a negative thought like, "I am not accomplishing anything anymore," doing something with it, and then coming to a reframe that's more factually based, that's more balanced: "I'm still accomplishing many things for my family and community even though I'm no longer working in my business." Freezing the negative thought, "I am rapidly deteriorating," and reframing it to something along the lines of, "The neurologist said I was the same as I was six months ago and didn't change my medication." The thought, "Our future is bleak," and turning it on its head: "We can still live a meaningful life despite the symptoms of Parkinson's disease."

Circling back to my friend Bob that I mentioned earlier in the talk and his anxiety about social situations, taking the negative thought, "Nobody at the party will talk to us," freezing it, looking at it a little bit more closely, and then maybe after careful inspection, coming up with a more balanced thought of, "At least some people at the party will talk to us. It's highly unlikely that we'll be completely ignored." Again, I'm not just talking about taking the thought and flipping it on its head because it's more positive or because it just sounds nicer. We want to take the negative thoughts and flip them on their head because they are not true in their current form, and we want to balance them out so we can allow the true thought, the accurate thought, to guide what we do and what we don't do, how we feel and what we don't feel in the course of the day. That's where the control lies.

We may not always be able to control how the Parkinson's presents itself on a given day, but we can always control what we do or don't do in response to the symptoms that we're having. We can always control how we're thinking about what's happening to us, the meaning that we are taking away, our interpretation, and we can look at those things more closely to make sure that they're balanced. So we can have healthy thoughts that help us cope effectively rather than destructive thoughts that derail and sabotage our coping efforts.

Now I'm going to move on to the next slide and just talk a little bit, very briefly, about some of the research that I've done in this area. I practice these techniques clinically, and I've also done some research studies that have looked at how effective these techniques can be when we present them together in a package and we're really working with folks to help them make important behavioral changes, engage in goal-directed behavior, increase their involvement in meaningful and pleasurable activities in creative ways, and learn how to identify and, gosh darn it, start to talk back to those negative thoughts. We talk about Rock Steady Boxing. Let's give some of these negative thoughts a strong right hook and put them in their place. Can we crush them like a bug and get really efficient at that?

Dr. Roseanne Dobkin 0:43:13
I've done several studies. I want to share some outcome data from one of the larger trials that I've completed to date. I've got a couple of other large studies in the works, but in terms of complete data, there is a randomized study I did a couple years ago where we took 80 people with Parkinson's and their caregivers and we randomly assigned them to one of two groups. Half of the people just continued to keep doing whatever it was they were doing under the supervision of their personal doctors. The other half also continued doing whatever it was they were doing under the supervision of their personal doctors, but we also added a 10-week skills-based approach to their treatment-as-usual protocol.

We looked to see, okay, what happened? Is this any better? Is this any more effective, any more helpful? If we work with people to make key cognitive changes and key behavioral changes, do they feel better? Do they function better than they otherwise would if they just continued with business as usual? If we look at the depression outcome slide, which is the next slide, what we see is it actually did make a difference.

If we look at the folks that received the cognitive behavioral therapy versus those that received the treatment as usual, you can see that treatment-as-usual line is pretty flat. They certainly didn't get any worse, but they didn't get significantly better. For those who received the cognitive therapy and really learned and started to utilize coping skills that empowered them to respond differently to their symptoms when they were experiencing them, their depression decreased pretty steadily over the 10-week treatment period, as well as over the follow-up period.

As the next slide shows, it wasn't just depression that got better. When people learned to incorporate these refined coping skills into their day-to-day, their anxiety improved. They were coping more effectively in general. Social functioning improved. They were less avoidant. They were less likely to isolate. We even saw some nice trends, some nice change in terms of motor function and physical function. Just to clarify this point, it wasn't so much so that when people's moods improved, their physical symptoms improved, but their physical symptoms stayed stable. When people's moods didn't improve or deteriorated, the physical functioning started to tick in the wrong direction. Taking control of one's mood can be a really effective way for taking control of overall Parkinson's-related health. I think it goes without saying that negative thoughts also improved, as I hoped they would, over the course of treatment.

As the next slide shows, one of, I think, the really innovative things that we do in the treatment protocols that we run out of my lab is, to the extent that it's possible and is appropriate in a given situation, we try to involve a loved one in the person with Parkinson's therapy. Really to just give the loved one a primer on what are some of the changes we're trying to make, what are some of the adaptive coping skills that we'd like to see more of in the home environment, and how might you help to support and reinforce and facilitate those changes? What this caregiver participation graph shows is that the more involvement, in general, that a loved one has, the better the outcome for the person with Parkinson's. The effects last a lot longer.

The next slide shows we've done some variations of this protocol, and continuing to implement this type of therapy even over the phone, even if they can't come in face to face, can be really, really helpful. Not everybody might be able to attend face to face and sit down with a therapist, but being able to engage in this type of conversation over the phone, over web-based video conferencing, can be really remarkable.

Dr. Roseanne Dobkin 0:47:47
We found very similar effects when we have provided the therapy via phone, via web-based video conferencing, as via other means.

In conclusion, I really want to emphasize that your mood is a critical aspect of living with Parkinson's that you can control. I don't want anybody on this call to suffer in silence. There are effective non-pharmacological treatments that are available, and these treatments can be used standalone or in conjunction with antidepressant medication. Thank you very much for your time and attention.

Dr. James Beck 0:48:29
Dr. Dobkin, that was fantastic. Thank you very much. I really enjoyed the discussion, and I'm sure our audience did as well. We actually have a number of questions which are coming in. One of the questions that we have is, I know our focus of our talk today was really on non-medication approaches, but I just wanted to get this out of the way. Many people are asking, when we're talking about the depression that people experience with Parkinson's disease, are medications helpful for depression?

Dr. Roseanne Dobkin 0:48:59
Absolutely. Medications are definitely helpful. I think the rule of thumb that we tend to follow is, if somebody has milder symptoms of depression — and of course I qualify the term milder because if you're experiencing the symptoms, they're problematic to you — but symptoms that are having an impact but maybe not a marked impact, we'd probably want to start with therapy. When symptoms get to more of the medium range, they're not so mild anymore, but they're more moderate or severe, then we definitely would like to introduce antidepressant medications and really use the antidepressants in combination with the therapy because when we see more moderate to more significant symptoms, it's really that combination approach that can be very helpful.

Dr. James Beck 0:49:49
Fantastic. I guess that leads to another question, and one that I think many people may want to know is: how do people come to your office? I mean, what is the pathway that people are going to take in order to get help from a professional like yourself? Are they self-referrals? Are they coming through a neurologist? How do people begin this pathway to get the help they need?

Dr. Roseanne Dobkin 0:50:12
That's a great question. I think people come to me or to colleagues like me in a variety of ways. I'd say maybe about 30% of the time, they are self-referred and they recognize that they could be coping better or maybe feeling a little bit better than they currently are. They ask around and they figure out who they might be able to go and talk to about their problems. Sometimes we get referrals from primary care doctors, from other psychiatrists in the community. I'd say about a third of the time the referral comes directly from the neurologist or from the movement disorder specialist.

What I would suggest to everybody listening in is that if your mood is not as good as you'd like it to be, even if you're not sure, is this a clinical syndrome or just an adjustment difficulty, say something. Mention it to your neurologist, mention it to your primary care doctor, mention it to a friend and ask for suggestions, ask for referrals as to who you may be able to go and talk to about it. There's a wonderful network out there in the Parkinson's community, so I'd invite people, if they're not sure who to ask or where to turn, to possibly contact your local support group, any of the major Parkinson's foundations, and ask for mental health referral information, and they will be able to plug you in the right direction.

Dr. James Beck 0:51:36
Okay, perfect. This leads me to the next question. This is from one of our listeners in Oregon, and it's really about depression versus apathy. The first part is, since many people with Parkinson's disease experience apathy, what does it take to get them motivated enough to start seeking this help? And can you explain really what the difference is between depression and apathy?

Dr. Roseanne Dobkin 0:52:00
Sure. Why don't I do that first and then we'll circle back. There's a fine line. Some would argue that there's an artificial distinction. Many would argue that they're very separate and unique constructs, but I think the highest-level distinction that I can offer is depression is sort of feeling sad, feeling low, and apathy is more of a lack of feeling. Not really feeling anything versus feeling bad.

But there's a lot of overlap because when you're depressed, one of the key symptoms of depression is we lose interest. We are not as motivated to go and do because we're sad. If you're apathetic, you may be not as motivated to go and do because you don't feel like you care too much in the moment. I think what we spoke about earlier in the presentation, in terms of some of the behavioral strategies, some of the behavioral goals that we might be able to set for ourselves, can be helpful if people are feeling stuck in the mud either because they're depressed or apathetic or both.

Setting very small, very specific goals based on maybe what used to be important to you, based on what's important to your family. If you don't care about something for your own personal interests, well maybe you would care more because it would make your spouse feel better, it would make your family or your grandkids feel better. Trying to find maybe an external point of reference. Set a goal and make it a micro-goal, a goal that is more readily achievable. If it's too much to go outside and walk for 15 minutes, can you go out for 10? If you can't go out for 10, can you go out for five? If you can't go out for five, can you go out for three?

I've never had anybody tell me — probably because they'd be too embarrassed — but I've never had anybody tell me they couldn't go out and walk for three minutes. Make the goal that small, set yourself up for success, and then once you start to feel or to sense kind of a glimmer of accomplishment, a glimmer of success, it will become self-reinforcing and it'll make it easier to keep going. We almost want to start by taking an outside-in approach.

You set the goal, you make it small, you make it reasonable. You let the goal guide your behavior, but then once you start to get a sense of reward, of satisfaction from the experience of that goal, then that internal longing, that internal sense of enthusiasm will kick in. I think it's more of a question of working initially from the outside in rather than the inside out. If we wait for that initial feeling to come, we're going to just be waiting a really long time. We have to do something to jumpstart that feeling, and then the rest will fall into place.

Dr. James Beck 0:54:44
Okay, great. Thank you. I want to say just a little pause that we're getting lots of feedback coming in. There's a health professional in Massachusetts who's just found your presentation wonderful and says thank you, Dr. Dobkin. Another person from Pennsylvania, an allied health professional who has a brother who has depression and anxiety, has commented that your information has been incredibly helpful for them and their family and their loved one with Parkinson's disease. I really appreciate your time.

As I mentioned, on the slide right now in front of everyone on the screen is information about resources available through the Parkinson's Foundation. We have our Helpline, 1-800-4PD-INFO, that's 1-800-473-4636. We've got Centers of Excellence that are worldwide and certainly throughout the United States, and we also have fact sheets, particularly on mood, which is very relevant. We have our webinars which are going to be coming up as well. I'd like to take a moment again to thank our sponsors AbbVie, Sunovion and Lundbeck for supporting this process and making this series possible.

Dr. Dobkin, I want to follow up on some of the things you were saying regarding treatment. One of the things that we've talked about is that you're really helping people develop a lot of coping skills. This question's from New Jersey. Given the biological component of the depression in PD, how are these coping skills going to help people? It seems like depression is part and parcel of PD. How will using these skills really help people?

Dr. Roseanne Dobkin 0:56:25
That's a really great question, and it's actually one that I get all the time. I'm really happy that somebody in New Jersey brought it up so we can address it for the whole group. As I mentioned earlier when we were going over my very sophisticated bubble diagram of all of the different factors that are implicated in the onset and maintenance of depressive symptoms, yes, the biology is there, but it's one component. We can never be certain in any one person's case what the other contributing factors are, and the good news is we don't need to know.

Because even if somebody's depression was 100% biological, which is highly unlikely and would be impossible to prove, there are going to be behavioral and cognitive correlates of that biological depression. If somebody has a biological depression that's triggering them to be avoidant, to be inactive, that might be triggering them to think in an excessively skewed or negative way about themselves or the world or the future.

If we intervene in that behavioral bubble, if we intervene in that cognitive bubble and help them to develop more adaptive coping responses, more balanced ways of viewing themselves and their situation, there's a feedback loop that's constantly at play and works in all directions. If we make changes in the behavioral and the cognitive correlates, even assuming a purely biological depression, there's going to be a feedback loop and it's going to help to regulate the biology. All of those factors influence one another.

It's kind of a myth. We've always thought, in many cases, especially in the mental health world, well we have to figure out the exact pinpointed cause in order to make a difference. While, in the ideal world, that information would be fabulous, we don't always have to have it because all factors, all variables influence one another. Even if we pick any point in the cycle and we make effective change, it's going to help to balance out the other pieces of the cycle. If we can make healthy cognitive changes and if we can make healthy behavioral changes in that feedback loop, it's also going to help regulate a person's biology.

Now that we have the technology and sophisticated research tools at our disposal, there have been some trials that have been done — not in my lab, I can't take credit for this — but if we look at the broader literature, when people go through successful cognitive therapy and they scan their brains and compare those images, let's say to somebody that's been treated with antidepressant medication, there are positive brain changes that show up on imaging. They're a little bit different than they might look if the changes are coming from therapy versus medication, but they're positive nonetheless. It's a question of, are the changes being made kind of in a top-down way versus a bottom-up way, in terms of how our brain figures things out, but we can actually see on imaging that cognitive therapy leads to brain changes. We're not touching the biology directly, but we're having indirect influences.

Dr. James Beck 0:59:34
Right, thank you. We're approaching our two o'clock hour, and I'm just hoping I can get a few more minutes with you before we have to lose you.

Dr. Roseanne Dobkin 0:59:41
Absolutely.

Dr. James Beck 0:59:42
I just want to let everyone know that we have a survey on the screen right now, and we really value your input and feedback on these webinars. In fact, that's how we create these webinars, through surveys of our listening community and our Parkinson's community, both people living with the disease and those who are affected by the disease, the caregivers and the care providers. Just a couple questions on treatment. One from a health professional in Oregon: is there any research data, they ask, on the use of narrative therapy with Parkinson's disease?

Dr. Roseanne Dobkin 1:00:16
Off the top of my head, I don't know of any research data on narrative therapy per se. But what I will suggest is that there's definitely a place for all sorts of evidence-based non-pharmacological interventions that have been helpful in other populations to be utilized in Parkinson's disease. It's likely that they will be successful. It's not so much that we need to go back to the drawing board and start from scratch with the content.

It's more about figuring out how to take the evidence-based approaches that are available and just tailor them, tweak them, both in terms of points of emphasis, in terms of how the information is presented to best meet the needs of a person with Parkinson's disease. I would suggest, wearing your clinician hat, pick the intervention that you think is most suitable, is clinically indicated for the individual that you're working with, and then tailor it as you move forward.

Dr. James Beck 1:01:23
Great. I've got one quick question regarding the Hamilton Depression Scale. A caregiver in Pennsylvania was asking about access to that. Is that something that's relevant for someone? Is it more for a clinician, or is it something that someone can utilize on their own to help improve their mental state?

Dr. Roseanne Dobkin 1:01:45
Great. The Hamilton Depression Scale is actually a rating scale that we tend to use in research. It's something that a clinician would administer to a person with Parkinson's disease, and you have to rate symptoms based on frequency and impact and distress. It would be a difficult measure for a person to self-administer. That being said, there are dozens of measures out there that can be utilized as a quick mood check for yourself that would probably be more user-friendly.

Again, none of these are ideal to use in a stand-alone type of way. Most scales are probably best used in the context of a conversation with a healthcare professional, but there are measures like the Geriatric Depression Scale or the Beck Depression Scale that are out there that are more self-report questionnaires that a person can fill out and just track over time to see how they're doing. But my recommendation for any formal systematic assessment is that it's probably going to be most helpful to do in collaboration with a treating healthcare professional.

The one exception to that would be there are terrific self-help books that are available that really focus on cognitive behavioral treatment principles that can be utilized to help people cope more effectively with depression and anxiety. Often in the context of those self-help books, there will be little guides or quizzes that people can take as they work through the material. That's probably the most appropriate place to find information that you can use for self-help tracking. Certainly, if anybody wants to back-channel to me directly, I'd be more than happy to provide resources and names of some of the self-help books that I tend to recommend.

Dr. James Beck 1:03:37
Okay, great, thank you. I want one final question. As we're going into Thanksgiving, many people are going to be with their families and there'll be recognition that their loved ones might not be feeling themselves, and their mental health may be not what it should be. Is there one specific piece of advice that you would give to family members on how to help people deal with their loved ones? This is from a health professional in Ohio.

Dr. Roseanne Dobkin 1:04:11
Yeah, that's a great question. Again, it's going to vary somewhat situation to situation because there's just so much uniqueness that people bring to the table. But I think just letting your loved one that is exhibiting signs of distress know that you're there and you're willing to talk and to listen. In addition to that, maybe encourage them toward activity. Try to invite them to engage, to connect in whatever way is possible.

If they don't feel like going to the family dinner because four hours is just too long, maybe they'd be willing to go for an hour, and then you could take it from there. The other thing that I would point out is that when people feel depressed, they tend to think in a very depressed way, very negative thoughts, like we highlighted during the presentation. Not only do they tend to think in depressed ways, they also tend to speak in ways that reflect that depressogenic thinking. If somebody were to hear a loved one express very negative thoughts like, 'Oh, I have nothing to look forward to,' or 'I'm a hopeless case,' it can be really helpful to talk back to those thoughts, to really help the loved one balance the thoughts out in the context of your conversation.

If you hear a loved one say, 'I'm a hopeless case,' maybe pack a power punch and say something like, 'Well, actually, you're not a hopeless case, and you're doing all the right therapies, and you've got a great team of doctors working for you, and we're here behind you.' Rather than ignoring the negative thought because it makes you uncomfortable or you don't really know what to say in response or you don't want to say the wrong thing, try to help them talk back to it. Try to help them gain some additional perspective, some additional insight onto what they're expressing to see if that can be beneficial.

Dr. James Beck 1:06:04
That's fantastic advice. Dr. Dobkin, I really want to thank you for your time, and I want to thank everybody for their time joining us today, listening to our wonderful webinar on depression and Parkinson's disease. I also want to thank our sponsors a final time, AbbVie, Sunovion and Lundbeck, for their support in making this series possible. For those of you who want to listen to this webinar again to catch extra notes, we'll have an archive of today's webinar available on Tuesday, November 28. That's next week, and you can find it at www.parkinson.org. I wish everyone a happy Thanksgiving. Have a good day.