Undesirable Behaviors are Not Their Choice

Why Someone with Dementia Cannot Control Undesirable Behaviors & How to Manage

Photo by Traci Milimo on Unsplash

I was working on something else when this came to me…that’s how my mind works I suppose.

Anyway, I was writing about the behaviors people with dementia sometimes show, and I thought this might be a good reminder to develop a mantra that might save your sanity and hold back regret.

I’m not here today to actually talk about what those behaviors are. You already know.

We all already know.

Instead, I want to dig a little deeper into the why of behavior change, as well as how you can come to accept it and what you can do about it.

Why Behaviors Change

There are over one-hundred billion neurons or brain cells. This vast network interconnects in the most amazing ways.

An analogy that comes to mind is a time many years ago when I was briefly staying with my parents while my apartment was being prepared. I had a cat who managed to find a spool of thread. He wound that thread around every chair and table leg in the loft, going back and forth, under things and back out. I’m sure he had a blast. The resulting mess took scissors to undo. That’s how brain cells are connected – only in a less messy way, I’m sure.

When someone develops dementia, those threads are snipped and the connection between one neuron and the next is lost, causing those neurons to wither away.

The Frontal Lobe

The frontal lobe is responsible for a few behavioral changes you may recognize. Within the domain of the frontal lobe are:

• Humor

• Initiation

• Motivation

• Impulse control

• Attention

• Concentration

• Multitasking ability

• Use of short-term memory

You had an ah-ha moment or two there, didn’t ya?

Loss of ability in these areas may lead your loved one to do things like quit a cleaning up job before it’s done or not respond to a question asked of them.

You might find that your loved one is more impulsive than they were before. This impulsiveness may include taking their clothing off at inopportune or inappropriate moments or being sexually inappropriate.

The mantra you must learn to say to yourself is it’s the disease, not my loved one.

Temporal and Parietal Lobes

These two areas of the brain tinker in the areas of memory and language. As neurons are lost here, your loved one may find it more difficult to find the word they’re looking for, recall a word, or tell you what they need.

Your loved one might pull back from conversations and spend less time socializing so they aren’t required to speak.

This can be very frustrating for your loved one, which they may exhibit as anger or agitation.

Other problems with a loss of neurons in these regions of the brain include having trouble getting around, even in familiar places, which causes more frustration and some crankiness.

Imagine being somewhere so familiar and yet not knowing where to go to use the bathroom or get a drink of water.

The last thing I remember my father saying to my mother while in our home was Barbara, I’m lost. Those words haunt me, even today, and bring me sadness. He was standing in the kitchen he’d known for twenty-three years looking for either the basement or garage, I don’t recall. He opened the pantry door and then said those words.

As your loved one experiences these things, they may wander, looking for what’s right in front of them, but what they cannot recognize as theirs.

Behavior as a Means of Communication

Instead of looking at undesirable behaviors as belligerence or misbehavior, as caregivers, we must look at these as a cry for help.

Your loved one is trying to tell you that something, other than the death of another neuron, is not right in their world.

When you look at these behaviors in this way, it hopefully guides you to a more solution-based thought process than a punitive one.

It’s the disease.

Now, I’m going to provide you with caregiver gold. Are you ready? If your loved one is exhibiting these undesirable behaviors, here’s what might be going on in their world.

Your loved one is undressing because he’s too warm, his clothing is uncomfortable, or he needs to use the bathroom.

Since I have several grandchildren with texture issues, I’ll help you with the uncomfortable clothing one – look for tags that are poking them, seams that are pressing too hard (socks, underwear, etc.), and even just the texture of the fabric. Some clothing on the inside has a different texture. Sweatpants over blue jeans, for example, is a great choice.

The skin of the elderly is much thinner and more delicate than ours and that can make it more sensitive to things you might not even consider.

Your loved one is hitting, kicking, or biting because of pain or discomfort. Additionally, they may feel threatened or that their personal space has been invaded when someone is trying to take care of them by bathing them or helping them with toileting.

Just because someone has dementia doesn’t mean they can’t feel embarrassed, even if they cannot express it.

Your loved one might be feeling frustrated that they need this type of assistance or they may feel that they have no control in their lives.

Pain and discomfort detection is more challenging. You must use body language to detect things like this. Are they favoring a part of their body (injury to a limb)? Are they avoiding eating or drinking (sore throat)? Is there swelling or discoloration?

Remember too that your loved one could be experiencing hallucinations or delusions and are seeing/hearing something or someone that you cannot, thus there’s a threat that they are aware of, but you are not.

Your loved one is crying, fearful, or avoiding something usually because of what’s called an environmental fear.

For example, if your loved one is struggling with depth perception, she may not want to get into a bathtub because she cannot tell how deep the water is and she’s afraid she’ll drown.

A dark colored rug might look to your loved one like a big hole in the floor or ground, making them not want to step on or near it.

While these things may sound silly to you, they are far from silly to your loved one. They’re very real perceived threats. No amount of talking will change things. Stepping into the tub to show how it’s not too deep won’t work. Walking on the rug will only scare them further as they fear losing you too.

Your loved one wanders or runs away for one of a few reasons. Either they’re anxious about something and are taking the flight part of fight or flight to heart, or they feel there’s something they should be doing, like going to work or fixing something.

Additionally, they might have lost something and they’re not desperately trying to find it.

On his last night at home, Dad moved around here like a man who didn’t have arthritis in his neck and back. He was furiously moving upstairs and down, looking for people who he thought were in our home.

Your loved one may seem sexually promiscuous because they misunderstand the purpose you have for doing something. For example, you are preparing to give your loved one a bath, but he perceives this as you wanting sex.

For others, they misunderstand the relationship between themselves and their caregiver. Your loved one may really long for the intimacy they’ve experienced before. They’re just inappropriately expressing this desire.

Your loved one touches a part of their body because there may be discomfort in that area. Touching the face might indicate some dental pain. Touching a hand, leg, or other body part might indicate pain in that area.

How to Manage these Dementia Behaviors

I’m not going to lie, managing these undesirable behaviors is not easy. In fact, it’ll take every bit if strength you have sometimes, but you must at least try.

Remain calm even though you’re frustrated too. Your loved one is more likely to mirror your behavior, so you must mirror what it is you want from him. If you want him to calm, then you too must be calm.

It’s the disease.

Remember that your loved one isn’t behaving in this way to upset, embarrass, or frustrate you, but to express that he’s experiencing one of those things himself.

Redirect your loved one to a different task, like helping you do something or working on an activity.

I just found a term I love – love lies. Love lies are where you meet your loved one in their reality, rather than arguing with them.

As an example, if your loved one wants to drive, you can tell them that they cannot because the car is in the shop. Offer a walk instead.

I’ve heard people say I tried to redirect and it didn’t work.

You must keep trying. Turn on music and get them to sing along or dance.

Turn on their favorite show on television and sit with them to watch for a while.

You’ll learn over time what works best and what is a waste of your time. Use your go-to’s.

It’s the disease.

Look for other problems like pain or something else that may be making them irritable. Sometimes, it’s a medication. Have any new meds been added? It might be that either the new medication is causing the problem or it’s interacting with another med and together, they’re troublesome.

If you cannot find the problem, or if you suspect it’s pain or medication-related it’s time to visit with the doctor.

Know that this is a temporary condition and it will change as your loved one’s brain changes. The problems you’re battling today will not be problems in a month or two. The disease will evolve, and these problems will fade away.

And yes, the changes may bring on new undesirable behaviors, but there will also come a day when your loved one is in late stages that you’ll wish for their activity.

Wrapping Up

One of the best things I did when caring for my father was to join a support group on Facebook. I’ve mentioned this numerous times.

These are people who are going through what you are. Chances are good that someone there has experienced something very similar to what you’re experiencing, and they can offer words of advice.

Other times, you can just share your heart to these groups and the other group members are there with the best online hugs and heartfelt empathy you can imagine.

The strategies and things I learned in that support group helped me so much. I also realized that what I was going through, while frustrating or exhausting, was nothing in comparison to what others were going through.

It taught me to know what to expect, should those things ever happen, and how best to manage those situations.

It’s the disease.

Keep saying that to yourself when you find yourself teetering on the edge of your own frustration and anger.

Put yourself in the shoes of your loved one and imagine how agitating or frustrating it must be to feel something and not have the ability to tell someone about it.

XO Kirbie