Editor’s note: Roseanne Dobkin, PhD, kindly authored this blog about mood changes and Parkinson’s. Dr. Dobkin is a professor of Psychiatry at Rutgers University-Robert Wood Johnson Medical School and a practicing clinical psychologist at Rutgers Health and in the New Jersey Veterans Affairs Healthcare System. She has been conducting mental health research in Parkinson’s disease since 2003. Key objectives of her research, some funded by The Michael J. Fox Foundation (MJFF), include improving the assessment and treatment of depression and anxiety in PD and utilizing telemedicine to improve access to mental health care.

If you or a loved one is experiencing a mental health emergency, call the National Suicide Prevention Lifeline at 988 or visit www.988lifeline.org.

No two people experience Parkinson’s disease (PD) the same way. Depression and anxiety are common and primary symptoms for many. While these symptoms can significantly impact quality of life, they are highly treatable. There are many effective management strategies, including, but not limited to, medication, exercise and psychotherapy (talk therapy), which can improve quality of life and reduce disability and distress.

As a clinical psychologist and researcher specializing in the treatment of mental health concerns in PD, I often get questions about the role of psychotherapy in PD care. Many people wonder if talk therapy is helpful, what it looks like in practice and how to find a good therapist.

Let’s explore this and more below.

As a start, consider a key question: What is Parkinson’s like for you? Is it mostly anxiety, tremor, fear of falling, stiffness, depression, insomnia, slowness, loss of interest, fatigue, memory and thinking problems? A combination of all these symptoms? Something else?

Though historically thought of as a “movement disorder,” PD is characterized by a diverse array of both motor and non-motor features. Depression and anxiety, also known as neuropsychiatric symptoms, are common and can be associated with significant distress and disability. About 80 percent of People with Parkinson’s (PwP) report at least one mental health concern at some point in their PD journey. Depression and anxiety may emerge at any time, and for some people, may predate the onset of motor symptoms, like tremor, by years or decades.  

The high rate of depression and anxiety in PD is likely due to many different factors. PD is associated with biological changes in several brain chemicals (neurotransmitters), regions and pathways related to mood. Equally important, the diagnosis itself and the progressive changes that the disease can cause over time can lead to significant stress, lifestyle disruption and need for adjustment that can compromise emotional well-being and quality of life.

The good news is that depression and anxiety are highly treatable. In addition to anti-depressant medication, anti-anxiety medication and exercise, there is growing interest in the use of psychotherapy to optimize mood and daily functioning for PwP. Many different types of psychotherapy exist. Treatment selection should be guided by the PwP’s need and preference. But for any treatment to be effective, the practitioner must be compassionate, sensitive and empathic. Without these key ingredients, any treatment will be sub-optimal.

What’s cognitive behavioral therapy?
Cognitive behavioral therapy (CBT) has been the most extensively studied type of psychotherapy in the PD community to date and has been a major focus of my research program for almost two decades. CBT aims to change unhealthy patterns of thinking and behavior associated with negative mood.

When it comes to negative mood, there often is more than one actor in the play. In addition to the biological factors (brain changes) mentioned above, there are cognitive and behavioral triggers for depression and anxiety:

• Cognitive factors involve your thinking patterns. These can include beliefs or assumptions you hold about yourself, the world and the future. The CBT model posits that feelings don’t come out of the blue; rather they come in response to how you label and interpret situations. Often, thoughts might come so quickly that you might not even be aware you are having them. Yet they linger long enough to negatively impact how you feel and how you act.
• Behavioral factors include what you are doing or not doing in response to life changes and challenges. Limited exposure to people, places and things associated with meaning, pleasure, and satisfaction can have a negative impact on mood. Once low mood sets in, you may be more likely to withdraw, isolate and avoid activities that have potential to sprinkle joy into the day, further intensifying unwanted feelings like depression and anxiety. 

What does CBT look like?
CBT addresses cognitive and behavioral triggers through a structured, active and collaborative approach tailored to meet the needs of each unique individual. It focuses on the development of adaptive coping skills to help manage depression, anxiety and the stress of living with a chronic medical condition.

Sample CBT techniques you and your therapist may explore include:

• Daily-goal setting around exercise, social or pleasant activities;
• Observing the relationship between your own thoughts (My future is bleak), feelings (sadness) and behaviors (staying in bed until noon);
• “Acting according to goals not feelings,” such as attending the boxing class you signed up for, because daily exercise is an important health goal, even when you “don’t feel like going;”
• Experimenting with new activities that have the potential to increase meaning, joy and pleasure in the day, such as taking a new class, trying a different hobby, going out for coffee with friends, taking pictures in the park or attending a little league baseball game;
• Problem-solving around physical limitations, such as pacing of activities, planning around “off” time, or testing out new activities to replace old ones that are no longer safe;
• Relaxation training, which can include deep breathing, visualization or progressive muscle relaxation;
• Developing a healthy sleep schedule; or
• Learning how to identify, pause, evaluate and change untrue negative thoughts that have a detrimental impact on mood, behavior and quality of life. For example, you may learn how to catch a negative thought such as “I am not accomplishing anything since I left my job,” evaluate it, and replace it with a more factual alternative, such as “Even though I am no longer working, I am still making active and important contributions to my family and community.”

Individuals are asked to practice the new skills learned in therapy at home, between therapy sessions. This “experimentation” is an important part of the process! You often have to test out different techniques and approaches to figure out what strategies work best for you. Your therapist can help you troubleshoot difficulties, celebrate successes and come up with a plan to make useful tools part of your daily and weekly routine. 

Consistent practice with your best tools will lead to greater improvements in mood. That said, allowing yourself grace and gratitude for trying and making progress is essential, as lasting change takes time. We all fall into old habits from time to time. Easier days will follow harder ones. “Perfect” is a myth that does not exist.  Success is a journey, not a destination.   

The benefits of CBT for people with PD have been demonstrated across three randomized controlled trials conducted by my team, with comparable effects noted for in-person and telehealth delivery. Other psychologists and research groups have also noted the helpful impact of this approach.

How do you determine if psychotherapy may be a helpful addition to your PD management?  
It is important to “keep an eye” on your mood as you navigate PD. Regularly ask yourself questions like, Is your mood as good as you would like it to be? Can you identify activities that you regularly engage in that bring you meaning, joy and pleasure? Do you feel lonely and isolated?  Are you avoiding other people? Do you regularly turn down invitations to get together with friends and family? Do you have frequent negative thoughts about yourself (I am helpless), your world (people judge me) or your future (I am rapidly deteriorating)?  Does worrying take up a lot of time? Is “What If” a common question you ask yourself? (What if I am too tired to exercise? What if my meds don’t work while I’m at a big event, like my child’s wedding? What if I never learn how to manage my anxiety?) Does fear dictate what you do or do not do. (Declining invitation to eat with family in a restaurant due to fear of having tremor in public?) Do you often focus on the worst-case scenario? (All of my friends will abandon me because my PD makes them uncomfortable.) Have loved ones commented that your mood seems different?

In considering the questions above, keep in mind that emotions are not the enemy. It is very healthy to feel, experience and express a range of emotions in response to life events and personal circumstances. Acknowledging and talking about your feelings does not mean you are giving into them. However, if negative moods or behaviors occur frequently; last for long periods of time; are quite bothersome; or lead to significant disruptions in your work, daily activities and relationships, it is likely time to seek treatment.

What’s the time commitment?
Psychotherapy is typically scheduled once a week or every other week for about 60 minutes per session. The session may take place in a provider’s office or via telehealth (phone or video).  As I mentioned above, much of the work takes place outside of session. The more you practice the new skills learned, the more symptom relief you will experience. When you begin to notice meaningful improvements in mood and coping, the frequency of therapy appointments will gradually decrease, until you feel ready to act as “your own therapist.” Many of my patients will continue to touch base a few times a year, for a skills refresher, even when things are going very well. While the number of therapy sessions is based on individual need, most people experience noticeable decreases in depression and anxiety over a period of three to four months.

Depending on your symptoms and your preference, psychotherapy may be used alone or in conjunction with medication.

How do you find a qualified mental health professional to provide psychotherapy?  
While any licensed mental health professional — psychologist, social worker, licensed professional counselor, marriage/family therapist — can provide psychotherapy, it is important to find someone you are comfortable with. As a starting point, you can speak with your movement disorder specialist, primary care doctor and/or other members of your health care team, such as your physical or speech therapist, about local providers whom they trust. Recommendations from family members and friends, as well as from fellow support group members and exercise class participants, may also prove helpful.

There are also several national (Psychology Today) and local therapist directories (search for your local state and county psychological associations: e.g., “New Jersey Psychological Association” or “Florida Psychological Association”) that enable you to search for mental health providers based on location, accepted insurance, out-of-pocket costs, types of therapy provided and clinical areas of interest and expertise. While there are few providers at the current time with specialized expertise in PD, those with documented interest in health or medical psychology, behavioral medicine, chronic illness, stress management, depression, anxiety, sleep or aging may be good starting points. Lastly, you can reach out to academic medical centers in your state. Many will have large behavioral health divisions and may be able to offer telemedicine services. 

Once you identify a “short-list” of potential providers, do some more homework. It can be helpful to phone interview a few different providers to see with whom you feel most comfortable prior to making an appointment.  You can ask about their background, training and types of mental health concerns they have the most experience treating. Most providers will offer a free 10–15-minute phone consultation prior the first appointment.

Some people also find it helpful to set up an initial consultation or try a couple of sessions with a few different providers, to determine who may be the best fit.  These sessions will be billed to you or your insurance (depending on your individual coverage), but may be worth your time, effort and co-pay in order to find the right provider for you. The quality of the therapist-client alliance is of utmost importance. If you are not comfortable, are hesitant to honestly and openly discuss your concerns or don’t feel heard or understood, it is not a good match.

Editor’s note: The Michael J. Fox Foundation and the Parkinson’s community, alongside the Medicare Mental Health Workforce Coalition, successfully advocated to ensure Medicare beneficiaries can access a broad range of mental health practitioners by recognizing licensed mental health counselors and therapists as covered Medicare providers. Read more here and here.

Depression and anxiety are core symptoms of PD, just like tremors and rigidity. They’re not a sign of weakness, failure or character defect. If your mood is not as good as you would like it to be, speak with your movement disorder specialist or primary care physician about local mental health referrals or search “find a therapist” directories online. Psychotherapy is fully covered by most insurance plans and can be incredibly beneficial, both in person and via telemedicine. Just like physical, occupational or speech therapy, early and effective treatment of depression and anxiety is a critical part of your overall PD management and well-being.

DON’T SUFFER IN SILENCE! EFFECTIVE TREATMENTS ARE AVAILABLE!

For more on this topic, visit MJFF’s webpage, watch a webinar or read a blog.

References:

Beck AT, Rush AJ, Shaw BF & Emery G. (1979). Cognitive therapy of depression. New York: Guilford Press.

Beck AT. (2008). The evolution of the cognitive model of depression and its neurobiological correlates. American Journal of Psychiatry, 165, 969–977.

Dobkin RD, Menza M, Allen LA, Gara M, Mark MH, Tiu J, Bienfait KL, Friedman J. Cognitive-behavioral therapy for depression in Parkinson’s disease: a randomized controlled trial. Am J Psychiatry. 2011;168(10):1066-1074.

Dobkin RD, Mann SL, Weintraub D, Rodriguez KM, Miller RB, St Hill L, King A, Gara MA, Interian A. Innovating Parkinson's Care: A Randomized Controlled Trial of Telemedicine Depression Treatment. Mov Disord. 2021; 36: 2549–58

Dobkin, RD, Mann, S. L., Gara, M. A., Interian, A., Rodriguez, K. M., & Menza, M. Telephone-based cognitive behavioral therapy for depression in Parkinson disease: A randomized controlled trial. Neurology. 2020; 94: e1764-e1773.