Adriana González, LCSW, es graduada de la San Diego State University, con una maestría en trabajo social y tiene licencia en el estado de California.  Como trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego, Adriana trabaja en colaboración con su equipo para satisfacer las necesidades cambiantes de las personas que viven con la enfermedad de Parkinson y su familia.

Julia Wood, MOT, OTR/L is an occupational therapist specializing in assessment and treatment of people with Parkinson’s disease. Julia is currently the director of Professional & Community Education at the Lewy Body Dementia Association (LBDA). Julia has served as faculty for the Parkinson’s Foundation Team Training for Parkinson program since 2016 and served on the Parkinson’s Foundation Rehabilitation Task Force in 2021. She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson’s Disease in 2022 and serves on the Comprehensive Care Subcommittee for the World Parkinson’s Congress (WPC) in Barcelona, Spain in 2023.

Rebecca (Becca) Miller, PhD, is a licensed clinical psychologist and Associate Professor at the Yale School of Medicine, Department of Psychiatry, New Haven CT, USA. She received her MA and PhD in Clinical Psychology from Long Island University, Brooklyn, and her BA from Barnard College. She serves as Director of Peer Support at Connecticut Mental Health Center in New Haven, using her lived experience with mental illness to inform her work. Her publications and other scholarship have focused on peer support for persons diagnosed with serious mental illnesses, person-centered and recovery-oriented approaches, alternative experiential approaches to clinical training programs, and deprescribing in psychiatry. She recently co-authored the book, Deprescribing in Psychiatry, published by Oxford University Press. Becca was diagnosed with Young Onset Parkinson’s Disease, at age 39 when her daughter was 9 months old, and after living with symptoms undiagnosed for 10 years prior. She has served as a delegate and spoken on YOPD and parenting at the World Parkinson Congress in Portland, OR and Kyoto, Japan. She finds it delightfully ironic that she discovered snails were her totem animal 20 years before diagnosis with YOPD. She currently lives in New Haven with her now 9-year-old daughter.

Dan Keller 0:08

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.

Up to 40% of people with Parkinson's disease may experience impulse control behaviors, such as compulsive shopping, gambling, hoarding, or hypersexuality. Dopamine agonist drugs are the most common cause. Impulse control behaviors become impulse control disorders when they impair a person's ability to function at home, work, or just make it through daily life. These disorders affect an estimated one in six people with Parkinson's taking dopamine agonists at some point.

Not only does dopamine in the brain control body movements, but it's also involved in the reward pathways. So drugs that stimulate one function may also stimulate the other, meaning impulsive behaviors may be highly pleasurable or anxiety-relieving to the person experiencing them, and they may therefore try to hide them. But these disorders can be harmful to the person, their family, and others around them in terms of financial, social, and health outcomes.

The good news is that impulse control disorders are responsive to treatment when recognized early enough. I spoke with Dr. Mark Groves, a psychiatrist at Mount Sinai Beth Israel in New York, about the need to promptly recognize and report the disorders and what can be done about them. He first defined them.

Mark Groves 1:57

They're behavioral disorders defined by a failure to resist temptation or an urge or an impulse that can harm oneself or others. Essentially, they're behavioral addictions. Individuals who are affected by impulse control disorders compulsively pursue reward-based activities and fail to make careful decisions about the consequences of those repetitive activities.

Dan Keller 2:19

Are some more prevalent in people with Parkinson's?

Mark Groves 2:23

The ones that have been described most commonly in Parkinson's include compulsive eating, hypersexuality, compulsive shopping, and compulsive gambling. As well, hobbyism—which is over-absorption, excessive time in creative projects or hobbies such that it consumes an individual and affects functioning—has also been described. And a related behavior change is called punding, which is intense preoccupation with purposeless sorting, taking apart, or arranging objects, for example, medications or buttons or things like that.

Dan Keller 2:55

Are impulse control disorders stable within a person? Do they change over time, or accumulate?

Mark Groves 3:00

Individuals certainly can have more than one impulse control disorder, but once it develops, it usually doesn't go away without treatment, which requires usually medication reduction. In the largest cross-sectional study of individuals with Parkinson's on medications, the DOMINION study, about one in seven, or 14% of patients, had one or more impulse control disorders.

Dan Keller 3:23

So they are mainly related to medication and not the underlying disease?

Mark Groves 3:27

Usually, that's the case. People who are not on medications who have Parkinson's can have some impulse control disorders, like pathological gambling and others, just like the general population. But dopaminergic medications, in particular dopamine agonists, greatly amplify the risk.

Dopamine agonists can increase the risk in one study two to three and a half times. And ropinirole and pramipexole are dopamine agonists that have particular impact on the emotional brain circuits and can be involved in bringing out impulse control disorders. But it's important to remember that not everyone on those medications gets impulse control disorders. There's an interaction between an individual's susceptibility to impulse control disorders, the medications, and life experience.

Risk factors for that individual's susceptibility include younger age of Parkinson's onset, male sex, also a family history of alcohol and drug problems. A personal history of alcohol or drug problems, or certainly a personal history of impulse control problems. Heavy cigarette smoking is also a risk factor. So it's an interaction of the meds and the experience within susceptible individuals.

Dan Keller 4:38

Does physician experience with dopaminergic drugs have an influence on whether these things are more or less likely to occur?

Mark Groves 4:48

Well, certainly it's critical for the prescribing physicians to be aware of these risks. So, usually patients with Parkinson's are best served by seeing a movement disorder specialist who is aware of that and will follow them closely. But conscientiousness of the physician in asking, educating patients and family members about the risk is also critical, and not all movement disorder doctors ask as regularly as others.

Dan Keller 5:14

Does the risk increase at certain times, especially when the medication reaches a peak, when people take medications that go up and down in their blood? Or is this more of a long-term constant disorder?

Mark Groves 5:26

My read of the literature, it's not fully clear. Higher doses definitely add higher risk. The shorter-acting forms that have more peaks and valleys across the day may be higher risk than the longer extended-release forms, but I don't think that's been definitively demonstrated. Pramipexole and ropinirole probably do have more impact than rotigotine, which is another dopamine agonist, because the pramipexole and the ropinirole bind much more tightly to the emotional brain circuit receptors—the dopamine receptors in the non-motor circuits of the emotional brain. And so it depends probably more on the type of medication and the dose than whether it's short or long-acting, but I don't think it's been completely definitively clarified.

Dan Keller 6:09

Should patients starting on one of these drugs be warned about the risk of developing an impulse control disorder, and their caregivers to look out for them?

Mark Groves 6:17

Absolutely. Because, as you can imagine, family members and patients who haven't heard about this might not have any idea that their medications could be related to these behaviors. Plus compulsive sexuality, pathological gambling—these are private activities that people feel ashamed about, and they're not going to ask their doctor about it if they're not inquired specifically about it.

Dan Keller 6:40

How do they affect people's lives?

Mark Groves 6:42

They can be devastating: extreme financial loss, marital strain, even divorce. I can't overstate how devastating they can be. So, it's absolutely critical to catch them early.

We really, really depend often on caregivers to have a better sense of how our patients are doing. As physicians, we can sometimes be fooled by the over-animated patients in the room that don't have any complaints, but we don't really realize that at home they're irritable, they're consumed in behavioral addictions, in these impulse control problems, and they have marital strain. So we really need to get collateral history, and the spouses often are the biggest clue, or partners, because there's a lot of irritability and marital strain.

Dan Keller 7:24

Can they be controlled?

Mark Groves 7:27

Sometimes they can remit completely for many when the medications are reduced, especially the dopamine agonist medications. But you have to reduce that dose pretty slowly and really watch people closely because there's a withdrawal syndrome that can occur. Patients will often call their doctor saying that they're off, but if they were examined by the movement disorder doctor, they actually motorically or physically can be okay.

So, this dopamine agonist withdrawal syndrome, which is almost like a cocaine withdrawal, is very important for the doctors to be aware of. Patients can feel very fatigued, dysphoric, and depressed, anxious, and irritable, and so you have to go slowly. So, reducing the meds is the right treatment, but some patients don't tolerate it.

I think that sometimes there are alternatives to going back up on the medication. Certain mood medications may help, and some patients they crash, and after a few days, they rebound. But if they've been on high doses of dopamine agonists for a long time, the withdrawal syndrome can be very difficult to treat and sometimes intractable. So it's really important to catch these impulse control disorders early.

Dan Keller 8:32

Can medications be added that specifically address the impulse control disorder?

Mark Groves 8:37

We're hoping to have better evidence for that. We really, really need good treatment studies. One well-designed study of Naltrexone showed that there was some hint of benefit, but the study failed to meet its primary outcome. I believe that Naltrexone, which is used for binge drinking and for other repetitive behaviors off-label, may be helpful for some of the milder impulse control disorders where people are over-absorbed in activities or for compulsive drinking.

But some case reports of clozapine, which is an antipsychotic that does not worsen Parkinson's symptoms—and clozapine may have a particularly strong anti-impulsive effect—some of those case reports report that it's helpful, and I've had some patients that seem to benefit from that. But we don't really have enough data, and we need more studies. Others have tried anti-seizure medications like valproate or topiramate, but there are very few case reports. So, the primary mainstay of treatment, absolutely, is a reduction of the dopamine agonist medications.

Dan Keller 9:36

Does it help to have talk therapy along with it, cognitive behavioral therapy, or others?

Mark Groves 9:40

It's a great question. There was at least one very good study of cognitive behavioral therapy that suggested a potential benefit, and support groups may be helpful. But it's important for people to realize that, akin to the contemporary treatment of substance use and addictions, a medical model is critical. Expecting that an individual going to 12-step programs is going to be helpful without looking at the medications and thinking about adjusting the dopaminergic meds and other things is unlikely to be as successful. So those things are probably ancillary for the severe ones, but medication treatments are helpful.

Dan Keller 10:15

What should physicians know about impulse control disorders? I'm sure that probably people with Parkinson's see their general practitioners as well as their movement disorders team.

Mark Groves 10:25

That's right. Physicians really need to know about this possibility. Some of these medications and other similar medications are prescribed for other conditions, but we have to certainly have physicians educate their patients and caregivers.

Getting collateral history is critical, regularly screening, assessing these risk factors that we talked about, treating early, considering partnering with a psychiatrist with either experience in behavioral addictions—an addiction psychiatrist—or maybe a psychiatrist with experience in Parkinson's, if it's very difficult. And the dopamine agonist withdrawal syndrome is critical for the physicians to understand because otherwise they misinterpret the patient's response as a return of physical symptoms, and they just go right back up on the medication. That's something that many doctors don't really realize that is important to know.

Dan Keller 11:12

How about what people with Parkinson's and their caregivers need to know?

Mark Groves 11:16

That these are common, they're not due to character deficits, but they're biologically mediated. It's an interaction between baseline biological susceptibility interacting with these meds that affect the reward circuitry in the brain, and life experiences. So, early identification is really important. And don't be ashamed; talk with your doctor about them.

And patients who recover from impulse control disorders often feel like the problem is solved, but they need to really maintain an empathetic understanding that their spouse—whose awareness was full and their eyes were wide open during the traumatic experiences—often takes much longer to recover. Healing is a process, and so I have often worked with caregivers or partners and had to encourage the patients to realize that it's not just fixed; the recovery takes a while.

Dan Keller 12:07

Should caregivers, spouses be on the lookout for these, actually monitor the patient's behavior? And if they do, this really affects the patient, so they have to sign on. Do they need consent for something that formal to be done?

Mark Groves 12:23

Yeah, certainly. Patient consent is always necessary for us as doctors to speak with others about one of our patients' care. But some physicians could reasonably insist that for particular patients at very high risk—say, those with a heavy history of substance use in their family, a personal substance use history, and young age—some physicians could reasonably insist they'd only prescribe some of the dopamine agonists, such as pramipexole and ropinirole, with a careful risk monitoring plan that incorporates a trusted close individual.

Dan Keller 12:53

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

Mark Groves 12:55

Well, one of the most useful explanatory models that I find fascinating for impulse control disorders is based on our understanding of reward-based learning in the brain. When we experience an unexpected reward, there's a transient release of dopamine in our reward learning center, called the ventral striatum, and that release of dopamine encodes the link between stimulation and reward. At the other extreme, when we expect a reward but we get a negative outcome or a punishment, there's a pause in the dopamine release in the reward learning center.

So it's a delicate balance between the history of the variable dopamine releases and pauses based on our past experiences that influence our goal-directed behavior. And in susceptible Parkinson's patients who are given these dopamine meds that bind to these limbic or emotional brain circuits, there's a shift or a bias such that those susceptible individuals become super-sensitive to rewards due to the boosted dopamine levels, and they can't learn from punishment or negative consequences.

So, if you think of an individual on a dopamine agonist who has a family vulnerability to impulse control disorders going to a casino, the danger is after the patient wins big. Because that dopamine release is so amplified by the medication, no matter how many times they lose, because they can no longer get that pause or that decrease in dopamine when they lose, they just keep getting locked into that behavioral addiction. And it's a real window on the way that goal-directed, reward-based learning occurs in the brain.

Dan Keller 14:32

So they're essentially getting a reward exogenously from administered medication, feeling a reward which would normally occur in the brain if you did something that deserved a reward, but here they don't have that stimulus.

Mark Groves 14:47

Well, the reward still occurs externally, but the external event is like a hit of crack cocaine. So, you know, they win big, but instead of a bit of a rise, there's a bigger rise, and they can't learn from their mistakes. So they get locked in more and more, so there's that bias towards reward learning.

Dan Keller 15:07

What's the take-home message to families and people with Parkinson's?

Mark Groves 15:11

That these are common. We all need to look for them. We need to educate doctors, patients, and caregivers about them. They're not due to character deficits; they're biologically based behavioral disorders. They can be treatable, but close follow-up is critical.

The dopamine agonist withdrawal syndrome is very common in individuals as they go down on the agonists, and the patient, him or herself, will often tell the doctor, "I'm off, I'm off, my Parkinson's is worse." Don't take those inputs as physicians by phone; examine the patient. Often, the clue is that they're sleeping for hours, they're fatigued, they're irritable, they're really in a bad mood. Sometimes they come out of that, but catching them early is critical because if patients are on these medications with impulse control disorders for a long period of time, it's much, much harder to treat them.

Dan Keller 16:00

Good, very good. Thank you. I appreciate it.

For more on impulse control behaviors and disorders, search "Impulse Control" on our website at parkinson.org. There, you'll find an article titled New Study Examines Impulse Control, REM Sleep, and Dopamine. It describes in more detail the study that Dr. Groves alluded to, and also has links to other resources on impulsivity and compulsive behavior, including a fact sheet on impulse control.

In the fact sheet are suggestions for things you can do if you suspect you're experiencing impulse control issues. One suggestion is to keep a drug diary and to record changes in your mood, behavior, and physical responses, and of course to discuss them with your doctor, family, a support group member, or a clergy person. These disorders usually subside with medication adjustments if they did not exist prior to using the medication. You can also visit parkinson.org/library for more information on impulse control disorders.

As always, our PD information specialists are a great resource to answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO.

The Parkinson's Foundation is thrilled to announce the expansion of our clinical study, PD GENEration: Mapping the Future of Parkinson's Disease. When you participate, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies. If you have a confirmed diagnosis of Parkinson's disease, visit parkinson.org/signup to learn more and enroll.

If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's home page. And if you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, 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.

Dr. Mark Groves is psychiatrist specializing in the psychiatric management of Parkinson’s disease and other movement disorders and is an Assistant Clinical Professor of Psychiatry and Neurology at the Icahn School of Medicine at Mount Sinai in New York City. For the last 17 years, he has been the consulting psychiatrist to the Movement Disorder Division and Parkinson’s Foundation Center of Excellence at Mount Sinai Beth Israel. Dr. Groves’s clinical interest in Parkinson’s disease was initially sparked in his early college years when he had 2 Parkinson’s Disease Foundation Summer research fellowships and worked with clinical researchers and patients at Columbia University.

A graduate of Brown University, Dr. Groves attended medical school at the University of California, San Francisco and completed his residency in Psychiatry and a fellowship in Consultation-Liaison Psychiatry at Columbia University/New York State Psychiatric Institute. He is board certified in Psychiatry, with subspecialty certifications in Psychosomatic Medicine and Neuropsychiatry/Behavioral Neurology.

Dr. Groves has published a number of papers and book chapters on Psychological Reactions to Illness, and clinical aspects of Parkinson’s disease and Huntington’s disease, but his primary focus is in the direct clinical work with patients, caregivers and multidisciplinary colleagues treating the psychological and non-motor symptoms of patients with movement disorders with psychotherapy, medications and other treatments. He continues to learn from the privileged opportunity of immersing himself in the inner experiences of his patients and partnering in care with other disciplines.

Cara Iyengar, MSW, LISW, is the social worker and Center of Excellence Coordinator for the University of Iowa Health Care Parkinson's Foundation Center of Excellence. She is a graduate of the University of Iowa and the University of Northern Iowa and has over a decade of social work experience. Cara has worked in a variety of healthcare and community settings but has mostly focused on working with older adults and caregivers. In her current role she assists patients and families navigate their Parkinson's and related diagnoses and helps them access resources and information. 

Cara is the current co-champion for palliative care at her COE and also serves on the COE Clinician Advisory Council on Palliative Care.  Since working in her current role, Cara has been involved with a variety of projects with the Parkinson's Foundation, including Patients Advisors in Research (PAIR), Hispanic Outreach Leadership Program, and has served a peer reviewer for the Parkinson's Foundation Community Grants.

Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G is a Neuroscience Medical Social Worker who works with patients, families, and care partners impacted by the diagnoses of movement disorders, such as Parkinson's Disease.

Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania. Lance holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) both specialty certifications from the National Association of Social Workers.

Lance holds a bachelor’s degree in science (BS) in Human Services from Lincoln University of PA and a master’s degree in Social Service (MSS) in Clinical Social Work from Bryn Mawr College’s Graduate School of Social Work and Social Research. Currently, Lance is pursuing his clinical supervision for his licensure in clinical social work (LCSW) and is currently a PhD student of Social Work at Widener University’s College of Health & Human Services.

Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.

La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.