What are Challenging Dementia Behaviors and How to Fix Them

We examine various frameworks for understanding these behaviors, such as the behavioral and psychological symptoms of dementia, the control and connect model, and the distinction between behaviors stemming from symptoms versus underlying causes.

We also consider the societal impact on these challenging behaviors and share insights from a case study in our Facebook group.

In this episode:

0:00:00 Introduction to Challenging Behaviors in Dementia

0:00:58 Unpacking Challenging Behaviors and Society's Contribution

0:01:40 Welcome to Dementia Caregiving for Families

0:04:53 The Challenges of Dementia Caregiving

0:09:00 A Different Approach to Addressing Challenging Behaviors

0:09:11 Symptom-Based vs. Underlying Cause-Based Approach to Challenging Behaviors

0:11:24 Control and Connect: A Different Approach to Challenging Behaviors

0:14:19 Recognizing the signs of something wrong

0:15:59 Understanding the impact of changes in behavior due to dementia

0:18:39 Changing interactions with a loved one with dementia

0:21:11 Exploring the impact of external factors on behavior changes

0:22:24 Analyzing behavior as a means of control or connection

0:25:48 Understanding the importance of allowing time for the brain to process

0:27:21 The PEACE Framework: Person-Centered Approach to Dementia Care

0:28:30 Workshop Details and Introduction

As someone deeply committed to enhancing dementia caregiving, I acknowledge the obstacles that caregivers face within the healthcare system.

To ease this burden, I'm crafting a seminar that tackles dementia management from a healthcare provider's angle, drawing from extensive research into challenging behaviors.

In discussing intervention strategies, we touch on medication management but advocate for a more comprehensive approach that seeks to understand and address the root causes, always keeping the individual's well-being at the forefront.

Medication should be a considered option, but not the go-to solution.

We then examine the symptom-based method, which zeroes in on behaviors directly linked to the brain's physical changes, such as hallucinations.

Equally crucial is identifying cause-based behaviors that may arise from feelings of fatigue, being overwhelmed, or sensory overstimulation.

The intriguing control and connect concept introduced by Teepa Snow sheds light on why certain behaviors may emerge—as attempts to either exert control over the environment or to seek connection with others.

I reflect on society's role in defining "challenging" behaviors and the realization that our responses can exacerbate the discomfort and confusion experienced by those with cognitive impairments.

From my personal journey with my father, I share the profound effect of embracing his repetitive conversations without correction, contributing to his sense of calm and security.

The narrative continues with an insight into my mother's care, where I discovered that it was my response to her behavior, rather than the behavior itself, that created anxiety.

A transformation in how I engaged with her led to remarkable improvements.

A related anecdote from our Facebook community illustrates how interpreting a loved one's behavior through the lens of control or connection can open pathways to understanding and adjusting care strategies.

As the brain changes, behaviors that were once manageable can trigger extreme reactions.

The podcast concludes with practical tips for family caregivers to mitigate these behaviors.

I host a monthly workshop offering the "peace framework," which includes person-centered care, tailored environments, and engaging activities.

The workshop also emphasizes the caregiver's role in these dynamics and provides evidence-based guidance.

We are thankful for the Success Seekers who accompany us on this path of aiding our loved ones with dementia.

Your involvement is invaluable, and we invite you to contribute reviews on Apple Podcasts and participate in our Facebook group, Dementia Caregiving for Families.

Let's collectively strive to bring serenity and ease to the caregiving experience amidst the challenges of dementia.

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Transcript

Introduction to Challenging Behaviors in Dementia

[0:00] Wow, what a great episode, Dementia Success Seeker.

We just finished the episode on what are challenging behaviors, and it was a great episode.

We looked at a couple of different things. We looked at how people, what, first of all, what quote unquote challenging behaviors are and are not.

And then, potentially, we looked at three different ways of classifying challenging dementia behaviors based on what is out in the healthcare world, what they're called.

One is called behavioral and psychological symptoms of dementia.

TIPA talks about control and connect. And then the third one that we talked about, which I can never remember, I always have to look at, or symptom-based behaviors versus underlying causes-based behaviors.

Unpacking Challenging Behaviors and Society's Contribution

[0:58] So we kind of unpacked those three things. I went on a long rant on how we, quote-unquote we, being society, actually help contribute to what's called challenging behaviors.

And then we talked about a case study or an example of a person that I helped yesterday in my free Facebook group called Dementia Caregiving for Families.

So thank you for listening to the episode today. I'm super excited that you're here.

If you're not a part of my Facebook group, remember to go join the Facebook group and here's the next episode.

Welcome to Dementia Caregiving for Families

[1:40] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving?

Looking for an easier path?

You're in the right place.

On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

[2:38] Well, welcome back to today's episode of Dementia Caregiving for Families.

This is episode number 60, and I wanted to speak about that for just a second because I don't know if you guys have ever started a new bank account, right?

When you go to the bank, you know, you had a scam happen or something.

That's what happened to us. we had somebody access our checking account, and we needed to get a new bank account.

And so, when we went to the bank, they asked us what number we wanted our checks to start at, and you have to come up with a number.

Well, the number 60, episode 60, isn't really an arbitrary number.

I did a different program called The Baffled Brain, Demystifying Dementia, and had done 55 episodes.

So, it just started counting from there. but I wanted to clarify to you why this is episode 60, even though you only can see a few episodes uploaded right now.

We're going to work on putting the old episodes up because they were kind of fun.

But what are we going to talk about today? Let's look at this.

The first thing I wanted to say is that if you are here with me today.

[3:54] You're likely struggling with somebody who has dementia. And for that, I am very sorry.

I know it is a difficult road for many people.

And I believe that the reason it is such a difficult road for many people is because the healthcare system is failing us and not giving us the right information at the right time.

And you are pretty much left up to figuring it out on your own.

And as a health care provider, I apologize for the health care system because we have made it so much harder and so much more burdensome than it has to be for the family caregivers of somebody living with dementia.

So first off, because you're here today, I know you're likely struggling with dementia in your family and for that I am super super sorry.

Join me on this journey and we will make it easier for you.

The Challenges of Dementia Caregiving

[4:53] So what I wanted to talk about today are challenging behaviors.

[4:59] What are, and I'm doing for the people listening, air quotes, challenging behaviors.

Right now I'm in the process of developing a 14-hour credit seminar for physical therapists, occupational therapists, and speech therapists on the topic of managing a person or helping people living with dementia from a health care provider's perspective.

And in this week I have been working on the section called, air quotes, challenging behaviors, and I started to look at it in a little bit of a different way.

[5:40] And the reason for that is because I do a lot of reading on dementia, and there are so many different definitions of different things and different ways to look at challenging behaviors.

So I thought I would kind of break down what I have noticed over the last week or so as I'm working on putting together this 14 credit hour presentation.

[6:04] Related to challenging behaviors and a couple of things that I know to be true.

There are two ways, there are a few ways to look at challenging behaviors.

One is called the behavioral and psychological symptoms of dementia or challenging behaviors.

So it's divided into two separate sections.

One, you know, are the challenging behaviors that are behavioral in nature, so things like shadowing or wandering through the house or being resistant to care or those kinds of behaviors that we call, air quotes, a behavior.

And then some of them are so behavioral and psychological symptoms of dementia.

So the psychological symptoms, things like anger and anxiety and depression and apathy.

So that's one way of looking at what we call challenging behaviors.

[7:18] And that puts it very squarely into the medical model.

And the way that these, air quotes, challenging behaviors are addressed, is typically through addressing medication or looking at medication management to address the things like hallucinations or the depression or how to manage these behaviors using medication.

And it doesn't necessarily always.

[7:52] Keep the person who is living with dementia front and center related to their behaviors, because it's treated like a symptom that just needs to be managed and the easiest way to manage it is with medication.

So there are pros and cons to everything in life, right?

And so one of the pros of a behavioral and psychological symptom approach to managing the behaviors, in air quotes, of a person living with dementia is that for some people medication is a necessary, solution.

But I believe it should be the last line of defense related to how to help a person living with dementia and not the first line of defense.

So, behavioral and psychological symptoms of dementia is one way of looking at challenging behaviors.

A Different Approach to Addressing Challenging Behaviors

[9:00] A different way of addressing challenging behaviors comes up between.

Symptom-Based vs. Underlying Cause-Based Approach to Challenging Behaviors

[9:11] A different way of addressing challenging behaviors can be considered what is called a symptom-based approach or an underlying causes-based.

[9:24] Approach of behavior management, right?

So what is a symptom-based approach for, air quotes again, challenging behaviors?

These are directly resultant of the physical changes in the brain caused by the dementia, right?

So for example, hallucinations.

So hallucinations typically occur frequently, because there is an actual physical reason in the brain for the hallucination, even though there are parts of a hallucination that can be managed better by changing some things, and we'll talk about that later on.

And then the other one is the, so symptom-based behaviors and then underlying cause-based behaviors.

So an underlying cause behavior may be because of something going on with the person due to the, you know, them being tired or them being overwhelmed or overstimulated, etc.

So, symptom-based behaviors and then underlying cause-based behaviors.

[10:42] So, this model also has some pros and cons because it's not cut and dry related to a quote, challenging behavior that a person.

[10:55] It's hard to determine for any person whether or not the challenging behavior, in air quotes again, is due to a physical underlying cause or if it's due to a something going on with the person or the environment or their care partner.

So that's It's a different way of classifying challenging, air quotes again, behaviors.

Control and Connect: A Different Approach to Challenging Behaviors

[11:24] And then recently I went to a TIPA Snow presentation and she actually had a different approach which I had never heard of before.

And I don't know that she necessarily categorizes because I'm not TIPA certified, but she talked about control and connect, right? So, we're also always looking to either control something or to connect with something.

And so, if you look at our, yet again, what we call challenging behaviors, they could be divided easily into I'm trying to control my environment because I feel out of control.

So, I'm trying to, I'm angry because I cannot do something and so therefore I'm trying to control.

Or I'm pacing and I'm crying or I'm upset because I'm looking to connect with someone.

So these were just three quick little down and dirty ways of kind of looking a little bit and challenging what we call in air quotes.

[12:32] And the reason I use air quotes for challenging behaviors is one of the things that I have come to conclude the longer I do this and quite frankly, because of my personal experience with my parents, I finally started to recognize that we, and what I mean by we, I don't want you to hear you.

I want you to hear we, we, society, the people around people with cognitive impairment are actually causing to a large extent the behaviors that we see.

And the reason I say that is because dementia creeps up on you, doesn't it?

[13:23] It's insidious. It, you kind of, when it, when it first, when you notice the first changes, you have that thought in your head.

I'm like, did I really see that?

Did that really happen? Was that there?

Or is this, oh, they're just tired, or they're overwhelmed, or the person, oh, it's just normal aging.

We, people around people who are starting to have cognitive changes, we really, we're far behind by the time we notice it, that we, society, everybody around this person has contributed to their sense of dis-ease.

Recognizing the signs of something wrong

[14:19] Or questioning, is this really happening to me?

And so by the time we truly have a, either a diagnosis or things have progressed to the point where it is no longer a guessing game, there really is something wrong.

We've done stupid things for a very long period of time.

And for example, with me, what happened with me is when my mom first started repeating herself, um, I frequently would say to her, but Mom, don't you remember you said that to me already, right?

Um, or, but Mom, we've had that conversation before.

Uh, all of these different types of things that I would say to her.

And then my mom was super anxious. all the time and I never could figure out why.

And then my dad got sick, right? So you guys might have heard the story about my dad getting sick about two years ago.

And when he first came out of the hospital, he was super, super confused.

And the second time he came out of the hospital, he couldn't stay at home with my mom and he's my mom's primary caregiver.

So they moved in with my husband and I.

Well, thankfully, the second time around, I was a little smarter than the first go-around and I realized that saying to my dad.

[15:44] Plus I'd had further education and training, that telling my dad that he wasn't remembering something had created anxiety in my mom, and I tried something different.

And the difference was remarkable.

Understanding the impact of changes in behavior due to dementia

[15:59] I never would have guessed it could be such a tremendous, big difference by just changing me and not trying to change my dad, right?

And so when they lived with us for the first two months after he came out of the hospital, he was what I call generously cuckoo for Cocoa Puffs and was super, super confused.

Every single morning, I would come out of the room and my dad would be in the living room where we kind of set up a little station for them to sit and be on their computers and do their daily things that they did at home, and he would say to me, good morning, Lizette, how did you sleep?

And I would say, I slept great, Dad, how did you sleep? And I slept with my eyes shut every single morning.

And then I'd go get my coffee, I'd go back to the office, I'd sit down and do my.

[16:52] Well, my private space, and I would sit down and do my morning devotions, and we would, I would finish my coffee, or it would get cold, and then I'd walk back through the living room, you know, on the other side of the house, and my dad would look up and say to me again, well, good morning, Lisette, how did you sleep?

Every single morning, we had the exact same, exact, word for word, same conversation.

[17:17] Four times, three to four times, every single morning before his brain was ready to move on.

But what I realized from doing...

This little loop with him was that, although it was something I had to work at, not to get frustrated, because it's super easy to say, but I told you so, right?

We've already had this conversation. I know how hard it is. You've got to bite your lip.

[17:47] But what happened was I started to realize that my dad wasn't anxious.

My dad was not anxious at all about the fact that he wasn't remembering these conversations.

Fast forward two years, he has hardly any recollection of the first two months when he came out of the hospital when they were actually living with us.

And so I concluded that my dad is not anxious at all.

He still has difficulty. His difficulty is not as profound or as pronounced as it was when he first came out of the hospital.

But what has happened, though, is that I realized that I probably contributed to my mom's challenging behaviors by the fact that I was caught by surprise.

Changing interactions with a loved one with dementia

[18:39] I did not have an awareness that my mom was having these changes earlier on, and now that her changes are more pronounced and it's evident that she really doesn't remember stuff.

[18:52] I have changed how I interact with my mom because I can change, my mom cannot.

And so my mom's right now, quote, unquote, challenging behaviors are pretty well controlled, not because my mom has changed, but because I have changed.

And so I wanted to have this conversation today about quote, unquote, what we call challenging behaviors, because it is something that is so frequent in our, in the healthcare space, calling these things challenging behaviors.

Another opportunity for you that I want to challenge you with on purpose, using the word challenge you with, is who is it challenging for?

[19:40] Who are, quote unquote, these challenging behaviors? Who do they challenge?

Do they challenge the person living with dementia? Or do they challenge me?

Because I would contend that nine out of 10 times, if not more, if not 100% of the time, but most of the time, a quote unquote challenging behavior is challenging to me, the care partner, the care provider, the family member.

They challenge me because I don't know what to do.

Because I was caught unaware.

Because, quite frankly, it impacts my life. I have to do things differently, right?

It, um, I have to control my tongue. Um, I have to change.

I have to... I have to drop everything I'm doing to go intervene and try to get this person who is demonstrating this challenge, which is their way of trying to communicate something to me, that something's going on.

It challenges me more than it challenges them.

[20:56] Yesterday in my Facebook group, which is called Dementia Caregiving for Families, She's a sweet success seeker, which is what I'm trying to call the people in my world, in my sphere of influence.

Exploring the impact of external factors on behavior changes

[21:11] This person, this success seeker, she is looking for solutions.

She is looking for answers to questions.

Well, she posted that when her mom came home from a.

[21:26] From the adult day program she was in, she left the house in the morning in a great way, and by the time she came home, she was all bent out of shape, and it was really impacting this member of my community's ability to function herself.

And she reached out and asked a question.

And so my answer to the question was to try to look at the situation related to whether this person who had been in the adult day program, what had happened at the adult day program? Did something happen there?

[22:03] Was she overwhelmed there?

Was there a care partner there that pushed every button of her?

And what we're seeing with and what we're dealing with at home is related to what happened at the day program.

[22:19] But the description that the member in my group had given was that her mom was

Analyzing behavior as a means of control or connection

[22:24] kind of being a little resistant to care. She had to change her.

She was being resistant and then wouldn't take her medication for her anxiety or for her behavior and then was sitting on the couch and had pulled the covers over her head in the house.

And my recommendation, my suggestion to the member of the community was to consider, you know, whether her mom was trying to control or connect.

Trying to figure out, is the fact that she's putting the blankets over her head, I'm trying to control my environment, I'm trying to, I can't tell you what's going on in my mind, but I can put the blanket over, I can cut off all of the stimulation because my brain is telling me I cannot do this, there's too much going on, leave me alone.

Like, the nonverbal to me said, leave me alone, I'm trying to control what's going on with me, but I can't tell you what's going on, just give me some space, right?

Or is she trying to connect with her daughter?

And my gut, my spidey senses, my gut said that she was trying to control because of whatever was going on.

[23:45] What was interesting is that the member of the community came back later on and said that she just gave her some space, she didn't want to eat, she wasn't going to die of hunger, so she wasn't going to force her, which was the right thing to do.

But she waited and waited and waited and just gave her mom that space that she needed.

And then the quote unquote challenging behavior went away.

She was able to, she, the daughter, was able to regain control of the situation, help her mom with her basic self-care skills, give her her medication, and really was able to avoid a catastrophic response, which is, you know, a response, we've all seen them, right?

We just don't call them catastrophic responses, but a catastrophic response is a response to a stimulus that is way outside proportion to the actual stimulus.

Where do we see these catastrophic responses all the time?

Think about the two-year-old kid in the grocery store, right, that's going, I want that thing, and laying on the floor, the two-year-old kicking and screaming.

[24:57] So their response to the situation is way out of control to the actual stimulus.

And the reason that that happens for people living with dementia is because as their brain is changing, the actual physical changes to the brain, some of the first things that go away is some of the higher level prefrontal cortex parts of our brain, which include our ability to control our emotions.

[25:31] So, back to my group member, the reason that, you know, that she was able to avoid that catastrophic response is because she gave her mom the space that her mom needed in order for her mom's brain to just process what was going on.

Understanding the importance of allowing time for the brain to process

[25:48] So, today's program was really about challenging behaviors, what they are, what to do about them, to give you a little bit of an idea of how to look at them from a couple of different perspectives.

So we looked at the behavioral and psychological approach.

We also looked at an underlying symptom and a, I can never remember, a symptom-based and an underlying cause-based program, you know, way of looking at it.

And we kind of looked at it from a control and a connect perspective.

I gave you a couple of definitions of what challenging behaviors are and what you, what you, as the.

[26:31] Family caregiver could do to actually help decrease the incidence or the frequency of what I called, air quotes, challenging behaviors.

So I have a free workshop once a month that I actually look at three things.

I look and one of the three things that we look at is a framework or a system or a repeatable process to actually be able to look at what's going on with the person that you love and try to actually stop the challenging behavior or stop the behavior before it starts by just using a simple framework that I call the peace framework because I want there to be peace in dementia care giving.

The PEACE Framework: Person-Centered Approach to Dementia Care

[27:21] The P actually stands for person, so it's an acronym. The first one is person-centered.

[27:27] The second one is the environment that we are living in.

The third one is activity engagement or lack of activity engagement, depending on what's going on with the person.

The third thing is a C, which is the care partner's contribution or the caregiver's contribution to what's going on.

And then the last one is actually evidence-based education regarding how to manage these challenging behaviors, challenging in air quotes.

So I invite you, if you haven't been to my free workshop, I invite you to come to my free workshop.

It's once a month. It's a live presentation.

You have the opportunity of actually asking me questions and having specific questions related to you and your family member, actually addressed on the workshop if you are willing to come on.

So, yet again, the workshop is in the show notes below, but it's pretty easy.

My website is DementiaCareGivingMadeEasy.com.

Workshop Details and Introduction

[28:30] And for the workshop, it's just forward slash workshop.

So, Dementia Success Seeker, thank you for joining me today, and I hope you learned something about how we as a society can help to try to help the people that we care and love for because obviously you wouldn't be here if you didn't have somebody that you love that you're trying to help that is living with dementia.

So thank you for joining me.

Thanks for joining me today Success Seeker. I pour my heart and soul into this program to serve you.

You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.

It's a positive and proactive space to navigate dementia caregiving together, get practical tools, and find support but without the verbal vomit.

Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis.

So join today and see you next time as our flight takes off.

Subscribe To Dementia Caregiving For Families Podcast

If you would like more information on how to help a parent living with dementia. Join Our Next FREE Workshop. https://www.dementiacaregivingmadeeasy.com/wsl

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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