Understanding Disinhibition, Impulse Control and Hypersexuality in FTD with Dr. Katya Rascovsky
This symptom is distressing, worrisome and oftentimes uncomfortable. Frank was the poster child for this symptom, so I write this blog with him so close to my heart.
Dr. Rascovsky, a neuropsychologist with extensive clinical and research experience in neurodegenerative disease, gently explained the complexities of this behavior with such poise and assurance. For the past 20 years, her research has focused on the cognitive and behavioral characteristics of Frontotemporal Degeneration (FTD) and Alzheimer’s Disease (AD), so she’s definitely our people, y’all!
Jumping right in, Katya defines disinhibition as an “unrestrained behavior with disregard for rules and or consequences.” She kindly shouts out Dr. Mario Mendez of the Memory and Cognitive Disorders Neurology at UCLA for the definition as she continues to explain there are two different ways disinhibition presents itself.
Person-based
Generalized impulsivity
Person-based disinhibition requires the person affected with FTD to have interactions with people, Katya describes. Person-based disinhibition includes social interactions that may involve but are definitely not limited to: inappropriate touching, kissing, nudity, loss of manners or social graces, sexual and criminal acts. Generalized impulsivity, on the other hand, is seen without the addition of another person and can look like basic reckless behavior including issues of gambling, stealing, reckless driving, etc. Dr. Rascovsky explains there is a huge disconnect in the brain, mainly in the frontal and temporal lobes. Hmmm…
Katya continues on within the realm of disinhibition and explains that this symptom of FTD is commonly seen within the behavioral variant and is suspected to be present within 76% of each BvFTD case. Dr. Rascovsky remarks that disinhibition and impulse control issues reach a peak and then begin to subside (and that made me take a deep breath and also thank my lucky stars for science). Katya describes that although this daunting behavior is unnerving and worrisome, it will end.
“The quicker we get a diagnosis, the quicker we can act and begin providing support, resources and education.”
Katya provides such wonderful advice in terms of managing disinhibition and beautifully empathizes with the FTD community by expressing how heartbreaking it is to see families struggle with behavior management, with understanding and with caregiving for a disease like this one.
Dr. Rascovsky provides solid tactical recommendations with the caveat that each person presents differently and any advice should be tailored to be person specific. The most important facet of managing this symptom is … education. Katya explains that when caregivers understand the disease, they understand the behaviors that coincide with the degeneration of the brain. “This is the disease talking,” she states, “not your loved one.” She says once families and caregivers realize the behaviors aren’t malicious or personal, there is a natural reframe that occurs that allows room for more acceptance and compassion. (Beautiful!)
Katya also suggests that you don’t argue or try to change the behavior. Instead, redirect, divert, distract. Along those lines, she suggests that you learn to pick your battles (man, hindsight is 20/20. I used to get all over Frank. Ugh!)
Next, Katya suggests that someone in the family or close family friend take on the responsibility of a durable POA. This will help with any legal matters or big decisions that need to be made. Along the same lines, safety is a huge priority and Dr. Rascovsky suggests that caregivers ``proactively restrict activities that have the potential to be troubling” (i.e. if reckless driving is an issue, take away/hide the keys). Controlling the environment is a huge way to manage disinhibition as well. Katya openly discusses the fact that when a person with FTD is stressed, overwhelmed or anxiety ridden, they will exhibit more behaviors. To mitigate that, she suggests to “minimize cognitive demands, simplify the environment and provide as much structure and daily activities as possible.” (I always think of idle hands being a bit more “dangerous” than busy ones!). Lastly, Dr. Rascovsky speaks about medication and the positive effect SSRIs (antidepressants) have on disinhibition in particular.
Although the topic of hypersexuality can be difficult to openly discuss, Katya gently touches on that too. She states there are two different types of hypersexual behavior, one being an opportunistic display where the person affected makes sexual comments, jokes or statements. She makes it clear that this arm of hypersexuality doesn’t translate to acts. On the other side of the coin, though, there is the other type which is a dramatic increase in sexual desire and frequency. Hypersexuality is common in about 13% of each BvFTD case and is caused by atrophy to the right anterior temporal lobe.
This topic, hitting close to home, brought up so many feelings and memories of my sweet dad. And I just want to say … to any of you in the thick of this specific behavior, I see you. And I totally get it.
Getting an accurate diagnosis can help to explain confusing and heartbreaking behavior changes and is key to mobilizing needed information, support, and resources.
The diagnostic evaluation process takes time. Don’t wait to use tips and strategies for disinhibited behaviors that may help your family now.
Learn as much as you can about FTD and behavior changes coincide with brain changes due to the disease. Understanding that disinhibited behavior symptoms of FTD and are not malicious or personal is key to reframing your approach.
Strategies that help to lessen behaviors can be learned. Don’t argue or try to change the behavior. Instead redirect, divert, and distract. You will gain confidence by trying different approaches and refining them based on the response and each situation.
Always prioritize safety - of the person with the disease, the caregiver and family. Think ahead to limit or shape activities that may be troubling.
Simplify the environment. Reduce stimulation from noise, light, or too much activity, and use positive daily routines for the person with FTD to do their best.
Support from others facing FTD is often the best intervention for both caregivers and persons living with FTD. Talking to others who share the journey provides emotional support and practical examples of strategies that help.
Resources from AFTD
To find centers with FTD experts for evaluation and diagnosis visit AFTD’s website: Research and Medical Centers | AFTD (theaftd.org)
Read more about Disinhibition in FTD | AFTD (theaftd.org) from Partners in FTD Care.
In some cases, disinhibited and impulsive behavior can lead to aggressive behaviors. Download a handout on the aggressive behavior that outlines strategies for safety: Managing Aggressive Behavior (theaftd.org)
For an overview of various behavioral symptoms in FTD, download this chart that describes the symptom and practical interventions to try.
Support is essential! In addition to Remember Me, find support groups including national, regional and local groups, support for persons living with FTD and other options like AFTD’s Facebook groups for care partners and young adults here: Find Support Near You… | AFTD (theaftd.org)
