Impulse Control (Or Lack Thereof) in Dementialand

When I do presentations and explain how dementia can impact impulse control, I ask groups, “How many of you have ever felt like hitting someone, kicking someone, or verbally berating someone…but didn’t?”

It’s funny. I’ve asked this question to quite a few groups: nursing home administrators, nurses, nursing assistants, social workers, family caregivers, nuns, cops, city bus drivers, college students, and legislators—to name a few. The initial response of most groups is to passively look around to see if anyone else raises their hand. It’s almost like they think it’s a trick question and that I’m setting them up to look like dregs of humanity.

And then I say, “Okay. Only me, then.”

The two notable exceptions are city bus drivers and (get this) nuns. When presenting to both of these groups, hands shot up and heads nodded. Maybe bus drivers admitting that they sometimes suppress angry responses isn’t surprising…but the nuns?

Let’s face it. We all feel that way once in a while—maybe more than once in a while. Even nuns.

When the nuns readily (and honestly) admitted that they have felt like lashing out at people, it reminded me that those passing thoughts are part of being human. And, for most of us most of the time, they are just that–passing thoughts.

It’s not the absence of these urges that make us kind people and upstanding citizens. It’s the decision to take a deep breath, push those thoughts aside, and respond in a different—and more acceptable—manner. Our goodness is not dependent on the absence of frustration (and even rage) with others. It’s more dependent on our choice to respond in a way that doesn’t demand someone call the cops.

For the majority of our population, it is a decision. However, the ability to make that decision depends on the activity in a certain part of our brain: the prefrontal cortex. The prefrontal cortex is responsible for impulse control, emotional regulation, self-regulation, and social skills.

Yeah, it’s pretty important.

When this part of the brain is damaged by dementia, people struggle to control their emotions. They may even become physically aggressive. At the very least, what goes through their head comes right out the mouth (whether it’s kind or not).

We’ve all been told “If you can’t say anything nice, don’t say anything at all.” However, let’s imagine what life is like when you really can’t stop yourself from saying those things that float through your head. I wouldn’t have many friends, I’d probably be divorced, and I’m pretty sure I would’ve lost my job by now.

And I’m not unique. We all have thoughts, urges, and desires that ain’t pretty. It’s seeing someone drop a $100 on the bill while walking down the street and thinking—just for a split second—that you could keep it and no one would know. But you give it back. It’s getting so frustrated with a coworker that you have this moment when you clench your jaw and having the word “asshole” float through your consciousness. But you don’t call them an asshole. It’s seeing a woman you haven’t seen in a year and realizing she’s put on an impressive amount of weight in that time. Thank you, prefrontal cortex, for the ability to notice but say “I love the way you’re wearing your hair,” rather than, “Wow! You’re a lot bigger than you were at the Christmas party!”

If my prefrontal cortex fails me, I’m screwed.

With Alzheimer’s, the prefrontal cortex is eventually impacted, but it is generally not affected until a bit later in the disease process. However, this part of the brain is usually impacted early in the disease process for those with frontotemporal dementia and chronic traumatic encephalopathy (CTE).

When I was in graduate school, I started volunteering for a hospice. My first hospice patient had frontotemporal dementia. I was told by the volunteer coordinator that several volunteers had already visited this guy, but none of them were willing to go back. She wasn’t sure why.

As I entered his house for the first time, I greeted him by saying “Hi! I’m Elaine, the hospice volunteer!”

His response was “Hi, Elaine, the hospice volunteer. Can I get a kiss?”

Except…he didn’t ask for a kiss. It was something a bit more sexually explicit, and I’m trying to keep my blog PG-13 here.

I called the volunteer coordinator that afternoon and said, “I think I know why the other volunteers don’t wanna go back.”

I didn’t know a lot about dementia at the time, but for some reason I was comfortable being around him. His wife worked two mornings a week, and I’d come over and stay with him during that time. I’d sit on the floor with my laptop and work on my thesis. He’d watch movies and pipe up every 15 minutes or so to ask for a sexual favor. I’d tell him I was pretty busy at the moment with my thesis. He seemed to respect that. I’m not sure how my 23-year-old self found normalcy in that routine, but we did it for about four months. Then he moved to a nursing home.

I can’t come across a copy of my thesis without thinking of this guy and wondering how many times I was asked for sexual favors in the process of writing it. And somehow it makes me smile. Despite the weirdness of our situation, I really liked him.

I didn’t know it at the time, but his prefrontal cortex was degenerating. I don’t think he ever had an MRI done, but an image of his brain would have likely shown atrophy of this area. He wasn’t a dirty old pervert harassing a young woman. His brain was broken.

I once heard someone say that the prefrontal cortex is what separates man from beast. When it doesn’t function correctly, we want what we want—and we want it now. We are unable to think ahead to predict the consequences of our words and actions. And we don’t process emotions like guilt and empathy.

For those of us without dementia, our prefrontal cortex is constantly functioning to help us make decisions that preserve our relationships and jobs. And all of us, from nuns to bus drivers to college professors, depend on it to keep us out of trouble.

7 thoughts on “Impulse Control (Or Lack Thereof) in Dementialand

  1. Excellent post! We’ve been in dementialand for over 3 years and I have been on the receiving end of this type of behavior (from people not my loved ones) and when you explain it that way, it’s easier to understand and to deal with it. Forgive them, they know not what they say was my motto. Depending on their moods, I would sometimes smile and say thanks for the offer but I’m married! They’d laugh, I’d laugh and all would be well. I guess it depends upon the personality of the patient and how far the brain has deteriorated. Good for you for hanging in there with him!


  2. So true. I had many moments of “you can’t make this stuff up” with my BvFTD husband. He was very taken with pretty young things at one point. Now sadly he cannot speak. Your blog is always illuminating and, bonus points, in a pretty crummy situation, makes me laugh.


  3. This is one of your most helpful blogs for me personally. Thank you so much for taking the time to educate those in the trenches. I look forward to your weekly blog posts.


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