Unlocking Behaviors – Urinary Issues

By Craig Escudé, MD and Ley Linder, BCBA

Julie’s favorite activity was playing checkers. When she met anyone, one of the first things she would ask was if they wanted to play checkers. She played game after game, and sometimes, she would lose herself in the game so much that she had to be reminded to stop for dinner or to take a bathroom break. After a particularly long checkers session, she suddenly got up and ran to the bathroom, but she didn’t quite make it, and she wet herself. This had happened several times before, so her support staff usually reminded her to take a break now and then. Julie’s usual direct support professional had recently taken a new job, and she now had someone new who had only been there for a week. After that first episode, the new DSP reminded Julie to take frequent breaks to go to the bathroom. Soon, Julie began to make frequent trips to the toilet independently, and the staff supported this new behavior.

Over the next couple of weeks, Julie began to get up more often and would go to the bathroom, but would only remain there for a couple of seconds and then would come back, never having used the facilities. A couple of days later, she became agitated when she attempted to use the facilities. Her support staff would continue to insist that she go, but Julie began to become aggressive toward her when she was encouraged or assisted to the bathroom. She was also quite fidgety and could not focus on her checkers game anymore.

Behavioral Discussion

When looking at Julie’s situation, two dynamics quickly come into focus. The first is the behavior change, both incremental and acute. The second is how we can use a timeline of behavior change to better guide interdisciplinary decision-making. Julie’s behaviors changed slowly over a couple of weeks, with her frequent trips to the restroom and not voiding. This behavior is likely related to Julie feeling the urge to go to the bathroom but not needing to go. Eventually, her behaviors showed a rapid change in intensity and presentation, possibly including uncharacteristic behaviors, such as aggression. These changes in behaviors over two weeks, centered around urination, provide valuable information that can be relayed to the interdisciplinary team to help Julie.

People with challenges in using words to communicate may exhibit different behaviors that can point to an underlying UTI. Find out a few that are important to recognize.

When analyzing behaviors, it is typical for the most “serious” behavior to receive the most significant emphasis. For Julie, this could be the rapid onset of aggression, but without explaining the context of the aggressive behavior, it increases the likelihood that we miss the function of Julie’s changes in behavior. When her behaviors are put into a contextual timeline, aggression is only one piece of the puzzle for Julie. For instance, a behavior analyst could tell an interdisciplinary team and/or medical professional, “Over the last two weeks, Julie has shown a change in behavior related to her using the restroom. She has had one recent instance of urinary incontinence, in addition to increased visits to the restroom without actually going. Recently, she has shown increased irritability and agitation, which has led to aggressive behaviors when prompted to go to the bathroom.”  This provides insight into the behavior related to going to the bathroom, which is the fundamental feature of her current behavioral concerns, not the specific aggressive behaviors. Using timelines to convey the context of behavior changes is a key feature of unlocking behavior.

Medical Discussion

Urinary tract infections (UTIs) are common, and when left untreated, they can result in more serious conditions, including pyelonephritis (kidney infection) and sepsis. People with challenges in using words to communicate may exhibit different behaviors that can point to an underlying UTI. Here are a few that are important to recognize:

New onset of urinary incontinence

  • Agitation, especially when approaching the bathroom

  • Repetitive trips to the bathroom

  • Grabbing or rubbing the genital area

  • Putting one’s hands in their pants

  • For those who use adult briefs, agitation or yelling at the time of urination into the brief

  • Abdominal guarding

  • Rocking back and forth

  • Change in cognitive status

  • Fatigue

The last four can be signs that a more serious infection is developing. Early recognition and medical attention are essential to prevent more severe complications.

Outcome

Julie’s staff noted that while she has been resistant to leaving her checkers games to go to the bathroom, she has never been agitated or aggressive until recently. They alerted the nurse, who then contacted their nurse practitioner. Julie underwent an exam to determine the cause and was found to have a UTI. She was started on an antibiotic, and her symptoms resolved.


About the Authors

Ley Linder, BCBA, is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.  

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD. He is also the host of the “IDD Health Matters” podcast.


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