Ritualistic Behaviors with Gillian Bradley
Next up, we’d like to warmly welcome Gillian Bradley, BSN to the stage!
“As the nurse for the center, I hope to be a resource for both patients and caregivers as they navigate new diagnoses, optimize symptom management and pursue research opportunities to join the fight against these devastating diseases. "
Gillian is the clinical research nurse at the Penn FTD Center. She received her BA in neuroscience from Drew University and her MA in Psychology and Brain Sciences from Indiana University Bloomington, where she first began her career studying molecular mechanisms of protection in neurodegenerative disease mouse models, but she quickly learned she wanted to work directly with patients and care partners rather than in a laboratory setting.
This episode begins with a “heavy hitter” question… What are ritualistic behaviors and how do they pertain to FTD? Gillian explains that ritualistic behaviors, also known as compulsive behaviors or repetitive behaviors, encompass a wide variety of FTD symptoms. Both in simple and complex repetitive actions that involve doing the same action over and over. On the simple side, behaviors like tapping, clapping, clicking, etc are demonstrated. Gillian continues to explain that there is a multipart involvement as well. “If a patient is collecting items or if they need to walk a very specific route to a friend's house at a specific time of day, those are also under the ritualistic umbrella as well.” Gillian continues describing these behaviors as habitual and although they have a very simple side, there is also a very intricate form that can present themselves too. Ritualistic Behaviors are a very common symptom in FTD and Gillian quotes about 60-70% patients seen at the Upenn FTD center exhibit some form of this major umbrella behavior.
Along with the simple habits and the complex compulsions - there is a language element as well. Parroting or repeating a phrase over and over is a form of ritualistic behavior too. Gillian explains that “more often than not,” the patient is completely unaware (lack of insight) that they are engaging in echoing the same phrase over and over. Gillian continues to explain that it can be suggested that somewhere deep inside the brain, the person with FTD feels they “should” respond but the atrophy to the frontal lobe makes an appropriate response more difficult. “The person affected likely doesn’t have the deep insight that their response isn’t properly fitting the context of the conversation.”
As we shift from understanding what this behavior entails to where in the brain and why it happens at all, we learn that earlier in the disease, BvFTD patients are seen to engage in higher levels of ritualistic behaviors. “This is where we see an increase in sweets and alcohol use, more often than not,” Gillian explains. Earlier in the disease is where the “complex” side shines. More hoarding, more strict schedules, and more complex routines. “Often as a person progresses, these complex behaviors shift into more simple ones like tapping, clapping or using repetitive phrases. We learn that because of where FTD strikes in the brain, the frontal and temporal lobes which house our understanding, this behavior really stems from the lack of insight. “Patients with FTD - the part of the brain that controls impulse is affected by the underlying pathology so they don’t have the ability to use societal norms to check their behavior.”
Gillian offers her best piece of advice to combat these behaviors and begins with reassuring us (and you!) as caregivers, “you know your loved one best,” … so as we say here at Remember Me, Trust your GUT! She then says, in general, she suggests differentiating the ritualistic behaviors that put you or your loved one at risk or are very disruptive/maladaptive in nature from the ones that are less disturbing or dangerous. “If the patient is clapping once and a while and it’s providing them comfort, we suggest letting them complete the behavior,” Gillian says. “If a patient is doing something unhealthy or dangerous, we want to try and control that.” Basically, our takeaway here is that you gotta learn to let things go that aren’t causing problems. If the behaviors are escalating or are dangerous, Gillian suggests calling your care team. She also says to tap into your creativity and “change the environment” before the behavior is exhibited. Lastly, Gillian explains that SSRI’s can provide some benefit in managing repetitive behaviors.
Gillian talks openly about the frustration felt by caregivers, how bittersweet it is to hear these stories of love and loss and how difficult this journey is for families and people affected.
“It’s ok to give yourself some grace too.”
As Gillian notes, in many cases these behaviors can be harmless and may help to fulfill a need for the person.
As with many symptoms in FTD, look closely at the situation to identify approaches that are person-centered.
It may not be possible to stop the behavior completely but there are often ways to provide supervision or support for safety, substitute with new routines or activities and reduce the frequency.
If the behavior causes safety concerns, approaches should focus on ways to change the environment to reduce the risk of the behavior whenever possible.
These approaches are often the first line of intervention but in some cases, medications such as SSRIs are also needed to help manage safety risks. Working with your health care providers is key.
AFTD’s FTD Behavior Tracker can help identify patterns, approaches and help you share concerns with health care providers.
The past issue of Partners in FTD Care below provides additional background on compulsive behaviors in a facility care setting. Compulsive Behavior in FTD
Connecting with other FTD care partners who have experience in these symptoms can be key to your approach and understanding. AFTD has a listing of support options for care partners here: https://www.theaftd.org/living-with-ftd/aftd-support-groups/
The AFTD HelpLine is also available as a resource to provide additional guidance, resources and support. 866-507-7222 or info@theaftd.org
