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Fall 2025
Fall 2025 Issue RBD: A Case Study REM Behavior Disorder for the Primary Care Provider and the Patient Having lectured on rapid eye movement (REM) behavior disorder (RBD) over many years and later developing RBD, I found that lecturing and experiencing are indeed different. Lecturing lacks emotion and is an intellectual exercise, whereas experiencing the disorder revealed frustration and concern about hurting someone or even myself. I decided to discuss RBD so that I could provide primary care physicians (PCPs) and patients the opportunity to understand RBD and expose the nuances of the disorder. This will offer both groups a more global understanding of how treatment and understanding can improve the quality of life for the patient and give the PCP an opportunity to form a helpful therapeutic alliance. Case Background The patient began experiencing RBD around November 15, 2023, when, in the middle of the night, he struck his wife in the head, which resulted in no injuries. Other continuing behaviors include kicking legs in the air and shouting very short phrases (eg, “stop,” “help,” and “get out of here”). Prior to retirement, the patient was an assistant professor in gerontology and the director of the master’s level geriatric care management program at a nearby university for more than 20 years. Since he and his spouse are both certified as geriatric care managers, this behavior was immediately recognized as RBD. The purpose of this case study and discussion is to apprise PCPs of the condition. Although the frequency is low, at 1% to 2% of the US population over the age of 50, it could be 3 to 6 million patients. Keep in mind that numerous patients may not report the behavior or are unaware of the significance of the behavior. If PCPs asked every patient, “When asleep, do you ever yell, kick, punch, or fall out of bed?” and the response was yes, an in-depth evaluation could and should follow. It is both a difficult and time-consuming diagnosis and may require a specialist if one is available. However, the PCP can offer support, provide patient education, and discontinue drugs that may be contributing to RBD. For example, the nadolol 20 mg tablet could be shifted from the morning to the evening; the steroid cream, which the patient believed exacerbated the RBD, could be limited or completely discontinued, thereby resulting in less frequent and less dramatic occurrences. A sleep diary was kept, noting the presence or absence of RBD, as well as medications and caffeine consumption. It recorded how medications affected sleep, time of day taken, half-life of medications, etc. After several weeks of trial and error, it became clear to the patient what was affecting his RBD. Additional Insights The Four Ds vs Deviant Behavior Dreams and RBD Dementia Drugs Numerous other off-label medications are employed to treat RBD but are beyond the scope of the article. Nonetheless, a paper in the Neurotherapeutics journal entitled “Current Concepts and Controversies in the Management of REM Sleep Behavior Disorder” elaborates on the alternatives. The medications the patient had been using played a role in exacerbating his RBD. The patient was applying prescribed topical creams containing steroids of different strengths (not all at once) for a dermatologic problem. When utilizing these creams, it seemed that the RBD was exacerbated. The stronger the steroid dose, the greater the incidence of REM behavior. Two to three days elapsed before the reaction lessened and then disappeared. His beta-blocker, nadolol, also acted as a trigger for RBD, as did caffeine. Once the patient shifted the beta-blocker to the morning and switched to an over-the-counter antihistamine cream, there was improvement in the RBD. The PCP could review patients’ medications to determine whether any could be contributing to the RBD, or refer them to a clinical pharmacist for review. Many prescription drugs have an impact on sleep, making this determination a difficult task. Disease vs Deviant Behavior The individual who has RBD can find it scary, embarrassing, humiliating, frustrating, and, depending on their medical literacy, difficult to understand. As a result, these feelings might prevent the individual with RBD from mentioning it as a problem or issue to the PCP. Hence, it’s advisable to ask the patient whether, during the night, they yell, kick, punch, fall out of bed, or get up and run toward an object in the bedroom. The PCP needs to explain to the patient, as well as others involved in this situation, that their loved ones’ punching or kicking them is not deviant behavior but rather a disease behavior that needs to be addressed. PCP Recommendations 1. Conduct a differential diagnosis to rule out sleep apnea, PTSD, and other causes of the behavior that can be successfully treated. 2. Explain the nature of the disorder in plain terms. Many patients will not understand the loss of atonia, the risk of developing synucleinopathy disease, and other medical terms used when discussing RBD. 3. Discuss treatment options so that the patient can give informed consent. Explain the risks and benefits of clonazepam vs melatonin. Investigate environmental changes that can be made to limit injury to the patient or others (eg, separate beds, padding on the floor to prevent injury to the patient who falls out of bed, etc). Although few specialists are available, refer to any who may be accessible. The PCP could also discuss off-label drugs that are in use if melatonin and clonazepam fail to limit the behaviors. 4. Discuss the concept of disease vs deviant. Since individuals have been hurt by the behavior and have hurt others, it is important to provide that explanation. 5. If the PCP believes the patient needs counseling and/or support concerning RBD being a prodrome for PD, LBD, or MSA, such services could be provided or arranged. Patient Considerations 2. Ask the PCP for patient educational material and search the internet for reliable sources such as the Mayo Clinic (www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/diagnosistreatment/drc-20352925) or the American Academy of Sleep Medicine (https://sleepeducation.org/sleep-disorders/rem-sleep-behavior-disorder/) 3. Discuss treatment options and the risks and benefits of the treatments with your PCP. 4. If the patient and PCP decide to utilize melatonin, remember that the United States has no purity laws, so company A’s 5 mg of melatonin may not be the same as company B’s 5 mg. In fact, melatonin is a prescribed medication in many European countries. 5. Review environmental interventions. If the patient falls out of bed, they might consider lowering the bed or using a bedside floor mat, separate beds, etc. An occupational therapy referral might also be helpful. 6. If the patient discovers that caffeine triggers RBD, determine a limited amount of daily caffeine and/or no caffeine after 10 AM. Also, ask the PCP if it is permissible to take medications that trigger the behavior in the morning rather than the evening. 7. Continue all medical treatments prescribed by the PCP. 8. Join a support group if available. Consider support groups for bed partners (See sidebar). 9. Depending on the situation, the patient might want to consult an elder care attorney to arrange for a medical power of attorney, as the duration of the RBD could result in a neurocognitive disorder such as dementia, and the patient may want to plan for this situation. Conclusion: Friend or Foe Friend: Recognizing and understanding RBD can be positive in that it mitigates the guilt associated with hurting your bed partner. The patient finds comfort and relief in learning that it is disease behavior and not deviant behavior. It allows the patient to plan for the future, such as creating a power of attorney. If there is a need for placement in a facility, the patient could participate in that decision. The patient might volunteer for research into RBD, as clinical trials can lead to prevention, treatment, and improved outcomes for the disease. Foe: The dreams can be frightening, alarming, and even violent, and cause significant distress for the patient. Many times, RBD causes injury to the patient and others, resulting in guilt and shame. RBD can create a sense of hopelessness, so the patient may withdraw and hide the behavior from the PCP and squander the opportunity for a meaningful intervention. Substantial work, research, and discovery remain for the medical community when the diagnosis is RBD. — James Siberski, MS, CMC, retired, was an assistant professor of gerontology and the director of the geriatric care management graduate certificate program at Misericordia University in Dallas, Pennsylvania. He is also an adjunct faculty member at University of Scranton. He has presented more than 150 workshops nationally on various aging-related topics and has been published in numerous professional and trade journals. — Carol Siberski, MS, CRmT, C-GCM, is a retired geriatric care manager in private practice and has participated in research in geriatrics and intellectual disabilities in Pennsylvania. She has coauthored articles in gerontology and intellectual disabilities.
PATIENT RESOURCES • American Sleep Association: Offers support groups for people with sleep disorders, including RBD and sleep apnea. • National Sleep Foundation. • Hoag Hospital Sleep Disorders Center: Offers support for bed partners.
References 2. Roguski A, Rayment D, Whone AL, Jones MW, Rolinski M. A neurologist's guide to REM sleep behavior disorder. Front Neurol. 2020;11:610. 3. Schenck CH. Update on rapid-eye-movement sleep behavior disorder (RBD): focus on its strong association with α-synucleinopathies. Clin Transl Neurosci. 2023;7(3):19. 4. Gilat M, Coeytaux Jackson A, Marshall NS, et al. Melatonin for rapid eye movement sleep behavior disorder in Parkinson's disease: a randomised controlled trial. Mov Disord. 2020;35(2):344-349. |
