Episode 179: Understanding Depression, Anxiety, and Apathy

Dan Keller 0:03

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. With Parkinson's disease, people often focus on motor symptoms such as stiffness, tremor, or balance problems, as well as non-motor problems like constipation, fatigue, or blood pressure control. But less well recognized, and therefore less addressed, are mental health conditions that are inherent to PD, including depression, anxiety, and apathy. May is Mental Health Awareness Month, so it's a perfect time to invite social worker Lauren Zelouf of Penn Medicine's Parkinson's Disease and Movement Disorders Center to discuss these problems and ways to cope with them. Can you describe how depression, anxiety, and apathy might look in a person with Parkinson's, and give me some examples?

Lauren Zelouf 1:35

Absolutely. So depression may look like persistent sadness, or having a low mood or feeling down. It could look like having little interest or pleasure in doing things that someone used to enjoy, or even feeling bad about yourself. And we also notice changes in sleep, appetite, feelings of hopelessness, and low energy. Depression could show up in someone with Parkinson's as maybe they're not exercising, or they're not going out or leaving the house because they feel like there's no point. So those feelings of hopelessness can come through. They might also be withdrawing or isolating themselves from friends and family. And I think what's important to note is that the severity of depression really may differ person to person. Right, one person might experience a low mood where it's hard for them to enjoy their daily activities, where another person may be having thoughts about death or suicide. There's definitely a difference in the level of severity, and it's not uncommon for people to have these thoughts. Our role as professionals is making sure people can access treatment and make sure those thoughts are addressed, so they can improve their quality of life.

Dan Keller 2:46

Why don't we move on to anxiety?

Lauren Zelouf 2:49

Okay. Anxiety might look like feeling nervous or tense or on edge, and not being able to stop or control one's worrying. So having those thoughts race—if you're constantly overthinking and worrying about many different things, you can also become easily annoyed or irritable when talking with others, so that can start to affect your relationships. The thing about anxiety is it can actually manifest in the body and exacerbate those physical symptoms that we see in Parkinson's, like having a tremor. Your tremor could worsen when you're anxious, you might notice some tightness in your throat or in your chest, maybe you have tension in your shoulders or your neck, so you really have those physical symptoms that you can experience. These changes in mood and anxiety can also be worse during motor fluctuations—those "off" times when your meds wear off. So, for example, someone with anxiety with Parkinson's, they might wake up in the morning and feel anxious and not know why, and there might not be a reason why, because anxiety is a symptom of the disease. Maybe they might constantly feel worried about going out with friends or family and going to new places, so they withdraw and stay home. Someone with Parkinson's could also spend hours online reading about the disease and not be able to focus on anything else, so those are just some examples.

Dan Keller 4:11

What about apathy, and how does that differ from or work into depression?

Lauren Zelouf 4:18

That's a great question, because apathy can commonly be misunderstood as depression. Someone who's apathetic is someone who has difficulty initiating tasks, so they lack that motivation or interest in doing things. It's not that they feel down or sad, it's just they don't have that "get up and go," that oomph that you need to kind of have the motivation to carry out your day. So I often hear from care partners that it's difficult to get their loved one to do something else other than watch TV, for example. They just sit in front of the TV all day, and they can't get them motivated to exercise, for example. It's really commonly mistaken as being lazy or just defiant or depressed, like you said. And so it's really important to be able to distinguish what is the symptom that we're seeing, and not just quickly chalking it up to be that someone is depressed, because it could just be they don't have that motivation.

Dan Keller 5:16

We talked about strategies for depression and anxiety, but what can people do about apathy?

Lauren Zelouf 5:24

So, apathy can be addressed with medication, but it can also be addressed by working with an occupational therapist to help come up with a schedule or developing a routine, and then also through behavioral management. So, that means kind of relying on someone else to help encourage and prompt someone. Because it's difficult for the person internally to have that motivation and to get up and go and get up and do things, it's helpful to have either a care partner—or, if care partners again feel like they are a nag and it's not helpful for the care partner to keep encouraging and the person not responding, sometimes it's helpful to reach out for help and see if calling someone else for help works. Whether it's a home health aide, an adult child, a neighbor, but seeing if someone else can help to encourage that routine and encourage the engagement in other activities.

Dan Keller 6:19

It seems like exercise is a good thing, but some of these conditions would kind of work against anyone being motivated to get up to exercise—sort of a vicious circle. So, how do you work around that, or motivate them?

Lauren Zelouf 6:35

That's a great question. It's true. I mean, in addition to any of these mental health challenges, fatigue and those physical symptoms can also make it difficult to have that motivation. I often recommend folks meet with an occupational therapist, because they can help come up with a schedule or routine, especially for someone who's struggling with apathy, or even if you struggle with depression or anxiety. An occupational therapist can help kind of discuss what are those activities that you used to be able to enjoy. Like maybe it was being active, maybe it was being outside and spending time with grandkids, or gardening, or doing something where you're doing a physical activity, but because of your motor symptoms, or because of your non-motor symptoms, it's become much more difficult to do those things. So an OT can really help brainstorm, you know, based on your current abilities: what can you do now, and how can we make sure you can build that into your day? So I would say an OT, but then also maybe it's signing up for exercise classes, like Rock Steady Boxing, or planning on going on a walk with a family member or neighbor, because once you have it scheduled, there's a little bit more accountability.

Dan Keller 7:47

Are these things we've been talking about—depression, anxiety, and apathy—part of the disease, and not just a reaction, a normal reaction to having the disease?

Lauren Zelouf 7:58

Absolutely, that's such a great point. Yeah, so depression, anxiety, and apathy are all caused by chemical changes occurring in the brain. They're not simply a reaction to receiving the diagnosis or due to difficulty coping. It definitely contributes, but we know that there are brain chemicals, or what we call neurotransmitters, that regulate movement, such as dopamine, norepinephrine, and serotonin, that actually also regulate mood, motivation, and energy. So we know that in Parkinson's, these chemicals are imbalanced, just like when treating other mental health challenges. So it's absolutely normal to have these symptoms in a person with Parkinson's. It's very common.

Dan Keller 8:40

What kind of practical steps can care partners or family members take when they notice these sorts of symptoms in their family member who has Parkinson's?

Lauren Zelouf 8:50

The first thing I would suggest is, because a lot of these things have overlapping symptoms, it can be easily misinterpreted for something else, like apathy being depression, for example. I think it's important to first ask questions to help understand what is actually being presented. So being able to find out what is the barrier, what is going on, why is your loved one having trouble leaving the home to go spend time with friends? Is it that they're feeling depressed, is it that they're feeling worried about what that outing would be like, or is it that they just don't have the motivation? So kind of getting a better understanding of what's going on, and then being able to name it. And now that you have this information—that these are symptoms—being able to educate and normalize to your loved one that these are all common and can be treated. So you can either have this conversation with your loved one and then message the doctor if in between visits, or you can bring it up at your next visit to talk about whether it's medications to address it, and/or also counseling, or support groups, and other strategies like that.

Dan Keller 9:56

In a previous podcast with a social worker, he said social workers are sort of the yellow pages of therapeutics—they know all the resources and where to send people and everything else. So, can you share some resources to help care partners and family members essentially navigate their loved ones' mental health challenges and also look out for themselves?

Lauren Zelouf 10:20

Yeah, that's a great point. Social workers can definitely... they wear a lot of hats, they definitely can do a lot. So, I would say, especially if you're at a Center of Excellence or you see a movement disorder specialist, finding out if the center you receive care from has a social worker on site, and being able to find out: does your social worker facilitate support groups for patients and for care partners? Do they have a psychiatrist on site to help with providing or prescribing medication for these mental health challenges? Sometimes it definitely needs to be talked about in the visit with the movement disorder specialist, and it's important for patients and care partners to advocate for themselves and bring up a need to address these symptoms. But also, sometimes the doctor feels like medications are tried and more specialty around prescribing medications is needed, and that's why a psychiatrist can be helpful, and some sites have access to a psychiatrist. Other resources for mental health support would be connecting with the National Suicide and Crisis Lifeline for people who are in a suicidal crisis, so that's 988, which would connect you with your local Lifeline Network crisis center that's closest to you, which is based on the area code of where you're calling from. It's a 24/7 hotline.

Another thing to take note of is how to find a mental health therapist. Some social workers at their centers could help with locating local therapists, but it's definitely hard to find someone who is Parkinson's specialized, and so I often recommend using a therapy finder like Psychology Today or ZenCare as another option, in addition to maybe calling your insurance network to find an in-network provider. If you use these therapy finders, you can actually plug in that you want someone who specializes in chronic illness or someone who knows grief and loss, depression, and anxiety. And while these folks might not have a Parkinson's knowledge, usually a center social worker would be able to provide information and education about Parkinson's to your therapist with your written consent. The most important thing is to find someone who you feel comfortable sharing with, and it's a safe space for you, but that you don't have to feel the burden of educating them about your disease.

Dan Keller 12:34

What are some non-drug strategies that people can take advantage of?

Lauren Zelouf 12:41

Yeah, yeah, so with depression and anxiety, there are a ton. You know, the first thing I would say would be lifestyle factors. I know we've been talking a lot about exercise, and that's always encouraged, but it's also maintaining a healthy diet, staying engaged and social with others, and really working on your sleep habits, so all of these things can help to boost mood. Other ways are to engage in breathing exercises, mindfulness, and grounding techniques that can work to help calm you down and bring you back into the present moment. The Parkinson's Foundation actually does Mindfulness Mondays, which is a great way to build that into your daily routine or your weekly routine. You can even do guided meditation using applications like Headspace, Calm, or Insight Timer, in addition to also looking into counseling and support group options.

One thing I wanted to make note of is cognitive behavioral therapy is actually an evidence-based treatment for anxiety and depression in Parkinson's, which is where you learn how your thoughts influence your feelings and then influence how you act or how you engage in the world. So CBT is one way that can treat anxiety and depression in Parkinson's. An example of someone I've worked with in counseling who struggled with anxiety is someone who is a patient with Parkinson's who became anxious whenever she was in anticipation of an outing. So her anxiety was triggered whenever she was leaving her home or leaving her familiar environment, and anticipatory anxiety was very debilitating for her. So, something that she did is a combination of taking an anti-anxiety medication, which she talked about with her movement disorder specialist, and with me, when I did counseling with her, we worked on grounding techniques—what I mentioned before, which is being able to kind of focus on her five senses, so kind of noticing what's going on in her environment to help self-regulate and then feel calmer, and really just kind of keeping note of what's going on in the present moment, not jumping ahead. We also worked on processing her fears, like her fear of falling, which is really a rational fear a lot of folks have. So I referred her to a physical and occupational therapist to work on fall prevention. And then we also worked on CBT themes, so that cognitive behavioral therapy I mentioned before, where we work to challenge her negative and irrational thoughts—so her thought that everything will go wrong with the outing—and then we work to challenge those to help her really not catastrophize or jump to conclusions. So there's a way to kind of work on CBT themes in counseling, which is what we did together and was very helpful for her.

Dan Keller 15:21

What about communicating these sorts of conditions and concerns to healthcare providers? Is the patient generally forthcoming? Should the care partner also be there to jump in when someone glosses over something? How should that work?

Lauren Zelouf 15:38

Yeah, that's a great point. It's possible that people with Parkinson's are not always as aware of these symptoms, or might not be able to point it out themselves. So, I think it is important if the person with Parkinson's is unable to advocate for themselves in the visit and point out areas that they're struggling in, just as they would in talking about their motor symptoms of tremor and stiffness. It is helpful for care partners to be that voice for those concerns, not waiting for the doctor to bring it up. We all know that visits can be very short, and there's only so much we can get to in a visit. So, I think having the care partner there to help to prioritize those concerns and bring up things that are concerning, like these non-motor symptoms, is helpful. And it might involve coming prepared for the visit, having questions or having things that you've noticed in your loved one that you have concerns about, and you have some ideas on how they might be addressed. You just need the support of the physician or healthcare provider.

Dan Keller 16:36

We touched upon it a little bit before, but can you expand on the role of the social worker? I think sometimes people have a misimpression or no impression of what social workers do and what kind of benefits they can derive from talking with one.

Lauren Zelouf 16:51

Yeah, absolutely. So social workers wear a lot of hats. I describe my role as being there to support people with Parkinson's and their loved ones throughout their journey with their Parkinson's. And in this realm, I would say, you know, our role can be helping to assess for mental health issues, and if there is a need for intervention, whether that's referrals to support groups, and/or counseling to address those ongoing mental health challenges. Or it could be providing just simple education about these healthy coping skills I mentioned before, like those grounding techniques or mindfulness, and also looking out for the care partner. We do a lot of support for the care partner, making sure that they have a chance to talk about the grief and loss they're experiencing as they witness their loved one's disease journey, and making sure they are keeping up with their doctor's appointments and getting the support they need through counseling and support groups, so it's really supporting the entire family.

Dan Keller 17:50

Being a care partner can be stressful in time, emotion, and physically. So, how can they take care of themselves to be in the best position to help their loved one?

Lauren Zelouf 18:00

Absolutely. So care partners may also encounter mood changes themselves in response to feeling overwhelmed, like you said, and stressed in their caregiving role, and experiencing grief and loss as they witness their loved one's PD progression. So, I would say it's important for care partners to take care of themselves by keeping up with their annual wellness visits with their doctors and accessing mental health services by seeking counseling or even attending support groups. Talking with their own healthcare provider could be useful to learn about what medication options there are, as well as other stress management tools that are available. I would also say care partners may find it helpful to explore options for respite from caregiving to be able to spend time doing things that they enjoy.

I also worked with a care partner in counseling whose spouse had Parkinson's disease dementia, and we processed together the grief and loss she's been experiencing as she witnesses his decline in thinking skills. It was very helpful for her to meet with her own doctor and ask for an antidepressant to support her during this time, so in addition to our work together, she also got that support. And we talked through ways that she could get respite to be able to go out and spend time with family and friends outside of the house.

Dan Keller 19:13

Is there anything we've missed that's important or interesting to add?

Lauren Zelouf 19:18

Yeah, so one thing that I would like to leave with is just being able to say that these symptoms are normal non-motor symptoms that happen in Parkinson's, and they're really difficult to go through alone. And so I want you to know that it takes courage to ask for help, but you don't have to go through this alone. There are resources and professionals available to help you navigate these mental health challenges, and through the journey of Parkinson's. So that's what social workers and the interdisciplinary team at centers are for. We're all there for you to help you navigate this journey.

Dan Keller 19:53

Very good, I'm sure that's much practical and helpful information for people. So thanks.

Lauren Zelouf 20:01

Yes, well, thank you, Dan, for the opportunity, and the Parkinson's Foundation for speaking today.

Dan Keller 20:15

As Lauren mentioned, it's fairly common for people with Parkinson's to experience these symptoms. Our website at parkinson.org has a wealth of resources on these topics. You can search our site using the term mental health, or for more specific information, search for depression, anxiety, or apathy. We have a fact sheet called Parkinson's 101 Mental Health for a general overview, or dive deeper into apathy by listening to another podcast episode called Strategies to Address Apathy and Exercise Motivation. Mental Health Awareness Month takes place annually in May, providing an opportunity to highlight the importance of mental wellbeing. While Parkinson's disease is often associated with its well-known movement-related symptoms, it's essential to recognize that many individuals with PD also face significant non-movement symptoms, including anxiety and depression. These mental health challenges, though not always visible to family and friends, can be just as, if not more debilitating than the physical symptoms.

Throughout Mental Health Awareness Month and beyond, the Parkinson's Foundation remains dedicated to supporting the Parkinson's community by sharing valuable mental health resources. For more information, please visit parkinson.org/mentalhealth. 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.

Lauren Zelouf, MSW, LCSW is a graduate of the University of Pennsylvania’s School of Social Policy and Practice, where she received her Master of Social Work in 2018. During her Master’s program, Lauren completed the Penn Aging Certificate (PAC) program and gained specialized skills and knowledge in the field of Geriatric Social Work. She completed her advanced-year field placement with the Penn Memory Center and stayed on as their Interim Social Worker in the summer following graduation. Lauren then spent two years as a Social Worker in a skilled nursing facility before returning to Penn Medicine. 
 
Lauren is a member of the Pennsylvania Society for Clinical Social Workers (PSCSW), a support group facilitator for MSA NJ, a non-profit organization supporting those living in the tri-state area affected by multiple system atrophy, and an avid speaker in the movement disorders community. Lauren has done speaking engagements with MSA NJ, the Parkinson Council, CurePSP, the National Ataxia Foundation, and Mission MSA as well as for numerous patient and care partner programs. In her spare time, Lauren volunteers with the Jewish Relief Agency, a non-profit organization that provides hunger relief to residents in the greater Philadelphia area.  
 
She has a passion for serving patients and families living with neurodegenerative disorders, and educating about the role of a social worker with this population. Lauren has been a Social Worker at Penn Medicine’s Parkinson’s Disease & Movement Disorders Center for almost five years.