5 MORE Strange Dementia Behaviors and Why They Happen

0:00Careblazer, it's two o 'clock in the afternoon and your loved one is calm. Everything seems normal. Nothing's out of the ordinary. But then 5.30 in the afternoon hits, and all of a sudden, your loved one seems agitated, restless, suspicious. Maybe they're checking the doors. Maybe they're constantly asking what's going on, what's about to happen. And you're left thinking, what the heck changed? They were just fine a couple of hours ago. Sometimes the answer is nothing happened. The only thing is that the time on the clock changed. And that's one of the five strange behaviors that I want to talk to you about today.

0:48Careblazer, real quick, if you learn better by watching things, then you can hop on over to my YouTube channel where I post these podcasts in video format, sometimes have different visuals to help people learn even better. You can just type in Careblazers into YouTube and I will pop up. All right, let's get back to today's podcast. Because after I made my last video on five strange dementia behaviors explained, I received hundreds of comments, thousands of views with Care Blazers telling me, oh my gosh, my loved one does exactly this, or oh my gosh, that finally makes sense. So today I'm doing five more.

1:27And just like in the original video, these five symptoms can look completely irrational or strange or like they don't make sense on the outside, on the surface. But when you understand what the brain is actually doing, it actually makes perfect sense. And stay with me because surprising, strange symptom number five is a symptom that makes the caregiver look like they are exaggerating or being dramatic about the symptoms they are seeing. Hi, I'm Dr. Natalie Edmonds, a board-certified geropsychologist and the founder of Dementia Care Blazers, welcome to this channel. Here is where we talk about everything dementia.

2:08So let's start with a symptom that seems to come out of nowhere, typically in the later afternoon, and that is sundowning. This is when a person is doing fairly well in the early parts of the day, but as the day wears on, they seem to get more confused, more pacing, more restless, more anxious, more irritable, which then makes it really difficult for family members to feel like they can settle their loved one down at night. As the evening approaches and the rest of the world seems to be settling in, for the person with dementia, it seems to be riling them up. And for some families, they can almost count on it like clockwork.

2:47They just know around this time, my loved one's going to start having these strange behaviors. Now, we do not have just one simple explanation for why sundowning happens. There are probably several things working together when we see the sundowning type behaviors. So number one, it's changes in the person's internal body clock. Number two, just fatigue and tiredness as the day wears on. It's just like more wear and tear on the brain the longer that they're awake. Number three, the lighting inside the home changes as the sunlight starts to go away, which also then can create shadows, which then also leads to some disorientation and confusion.

3:32And when we're talking about somebody who has dementia, their brain is working incredibly hard all day long just to try to figure out what's going on. So by the time the evening rolls around, their brain is depleted. Think about it this way. Think about the brain's ability to handle confusion and information similar to the battery on your phone. In the morning, you have a full charge. But as the day goes on and you keep using it, that charge starts to dwindle. Now, at a darker room, dinner's being prepared, the television is on, people are moving around, maybe the you, the Careblazer, you're tired too.

4:17All of these factors are happening. So the same exact amount of stimulation that the person was able to handle at 10 a.m., all of a sudden becomes completely different at 6 p.m. That is why one of the most useful things that you can do with sundowning is to stop looking at what happened when they became upset or when they start doing the sundowning behaviors and instead start looking at what happens before that person becomes upset. Instead of responding in the moment, we want to proactively respond before the sundowning moment. So ask yourself, what time does that behavior typically start? What is happening around the person at that time?

5:01Are they tired, hungry? Is the house getting darker? Is there more noise? Is there a certain TV program that happens to be on? One Careblazer that I worked with noticed that her sister became restless pretty much all the time, right around 6 p.m. at night. So basically what she decided to do, since this was like clockwork, is instead of waiting till 6 p.m. when her sister became agitated, she started intervening around 5.45 p.m. And around 5.30, 5.45, she engaged her sister in an activity, something that was familiar and calming to her sister, whether that was folding towels, sitting together with music, just something simple.

5:43She's proactively getting her sister involved in something calming and easy for her to do, so that by the time 6 p.m. rolled around, she was already pleasantly engaged in an activity. Now, it doesn't magically erase sundowning symptoms, but what it does is it stops treating sundowning as a surprise. There are many behaviors in dementia that happen repeatedly, and for some reason, for a lot of people, they still act surprised or like they don't know what to do when it happens. But if there is a behavior that is happening repeatedly, especially at around the similar time of day, we can start brainstorming now.

6:22What are we going to do just before that time to help reduce the chances of it happening or at the very least, reduce the intensity of that behavior if it does happen? If you can find the pattern, you can often get ahead of the behavior. And that's a huge principle in dementia care. Okay, let's move on to number two, shadowing. You walk into the kitchen, they walk right behind you. You go into the bedroom, they're right behind you. You go into the bathroom, they're standing right outside the door waiting for you to get in. You sit down, they sit down. It's like you have a shadow. They are your shadow, hence the term shadowing.

7:02And this can become incredibly exhausting and frustrating for you, the Careblazer, because it can feel like you have absolutely no privacy or time to yourself. But shadowing starts to make more sense when you understand what you represent to your loved one who is shadowing. You represent their orientation, their safety, the person who knows what's happening, the person who knows where things are, the familiar person in a world that is becoming increasingly unfamiliar. And dementia can interfere with the ability for the person to hang on to and remember any reassurance you have provided them. So if you say something like, I'm just going into the other room, I'll be right back.

7:48Their brain has a hard time holding on to that information. And three minutes later, they're wondering where you are, where their safety base is. That information goes quickly. And so if the person they are depending on you isn't there, they're going to go look for you. They're going to want to be around you. Think about, again, let's go to our phones since many of us are unfortunately very tied to our phones. It's like all of a sudden you're doing something on your phone and you lose your Wi-Fi connection. You lose your cell phone reception. There you are trying to search for it again, trying to reconnect, trying to get the signal that's still there.

8:26So for people with dementia, you are basically their signal. They are always trying to connect to you. In their minds, even though they might not be able to say this, in most cases they can't or acknowledge this, if you are there, they are okay. You represent safety. So in this kind of situation, if this is happening, you want to be asking yourself the question of what could help them feel more secure when I am not directly in front of them? That answer will be different depending on different people. I have certainly worked with Care Blazers who sometimes leave a story in their voice playing on an audio for them to listen to.

9:04Sometimes maybe a video of family playing on TV when they want to step out of the room. What is it that's going to provide a bit of reassurance for them if you are not physically present? What can you do to help it seem as if maybe you are still physically present? Third strange symptom, hiding, hoarding, collecting things. So this is where perhaps your loved one has 47 dirty napkins in her drawer and doesn't want to put them away. Or you find jewelry inside of a shoe. Or maybe even you find soiled underwear or clothing hiding behind a pot in the house. Maybe they're collecting food, plastic bags, toilet papers, forks, whatever it is, they They are just collecting things and they are objects that maybe don't seem to have much value at all.

9:55They maybe are objects that don't seem to belong together at all. And you're sitting there like observing this behavior and the items that they're hanging onto or hiding or hoarding or collecting. And you're thinking like, what in the world is going on here? Why are they doing this? Okay, so the thing to know about this kind of behavior is that there's no one single reason why people with dementia do this, it can be for a variety of different reasons. Number one, it could be related to their memory. Sometimes they put something somewhere for safekeeping, and then they forgot where that safe place was that they put it.

10:35So they're hiding things for the safekeeping, and then they forget where they put it, which sometimes can lead also into accusations and suspicion that somebody is stealing from them. Sometimes collecting things and keeping them in their possession or somewhere nearby also can offer them a sense of safety or even control that they have these things with them. Think about it maybe like a security blanket, but for them it might be security napkins or security takeout food containers. I remember once working with a lady who definitely had the symptom of hoarding and it became a problem because she was living in a memory care facility and they consulted me because the room was becoming out of code, out of compliance with what the memory care facility would allow, but she just kept hoarding things and hoarding things.

11:24But we discovered she grew up in the Great Depression when food and supplies were scarce. So she grew up in a time period where you didn't throw anything away and she was kind of living back in that time period, which we will come to very soon in the next symptom. But here's what I want you to know not only about this collecting, hiding, and hoarding, but about all dementia symptoms across the board. You do not always need to know the exact reason why the person with dementia is doing what they are doing to make that situation better. There are still ways we can intervene to make a situation better, even if we don't fully understand why it is happening.

12:02So a couple of questions also to ask yourself in this situation is number one, what they are doing, Is it hurting anything? Number two, is it creating a safety issue? What seems important to them about these objects? Is it possible that you can give them a safe place for them to keep these things? Maybe just certain things. Is it possible for the hiding, forgetting, losing, those kinds of things? If it is something very important, is it possible to keep duplicates? Because if somebody is constantly collecting napkins and it's not hurting anybody at all, the question might not be, how do we stop them from collecting napkins?

12:45The question might be, all right, this drawer is their napkin drawer. This is where they collect the napkins. And that's exactly the kind of questions and the shift and the approaches I talk about in my book, The Dementia Care Toolkit. So instead of asking yourself, okay, how do I make this person stop this strange thing? How do I change them? We start asking ourselves what problem actually needs to be solved here. And sometimes, oftentimes, those are not the same answer. And there are problems we can simply walk away from. And then there are problems we absolutely have to do something about. That's where we want to focus our precious energy and attention.

13:25All right, number four, time shifting. This is one that can really throw families for a loop. And it's basically like, let's say your loved one all of a sudden is saying, I have to go to work. I have to go to work. But they've been retired for 20 years. Or they're saying something like, I have to go home. My mom is waiting for me. Their mom died decades ago. Or they're saying, I have to get to the bus stop and pick up the kids. But their kids are grown adults no longer at the bus stop. This is time shifting. This is where the person's internal sense of where they are in their life may no longer match the calendar that we're living in.

14:02Where older memories are more accessible than newer information, the newer, more recent things that are happening are harder for them to hang on to. So from your perspective, it's 2026, your loved one's 81. From their perspective, they are 23. And that's why when we try to correct them when they have this time shifting issue, like you tried to correct them and say, oh, your mom is dead or, oh, you're 81 years old. It often doesn't work because in their mind, they're living in a different timeline. So in these situations, try to pay attention to the need underneath the time shift. So if they are saying like, I need to get home, I need to get home, what might be underneath that comment from that time shift?

14:47likely a sense of them not feeling settled wherever they are currently. If it's like, I'm looking for mom, I need to go get my mom. Maybe it's a feeling and need underneath that of like, I need to feel safe. If it's basically, I need to get to work. I need to get to work. Maybe it's a need underneath that time shift of, I have a role and an obligation and a duty of something I need to fulfill. You do not always need to pull the person back into the current calendar to be able to work through these time shift symptoms. Sometimes you can meet that need underneath their symptom to help reassure them, help them feel calm, and help meet whatever need you think it is that they are expressing.

15:30Which brings me to number five, show timing. Have you ever spent time with your loved one where you have an upcoming doctor's appointment or you have a phone call coming up with a family and you are basically jotting down all the major symptoms and strange things you have noticed, all the things your loved one is having difficulty with so that you can update the provider. You can let the doctor know everything that's going on. And then you get to the doctor's appointment and all of a sudden they seem totally fine. They're polite. They're cooperative. They're quiet. They're not asking the same question over and over.

16:04They're not looking agitated at all. They don't seem confused. And where you were thinking, finally, somebody's going to see this. Finally, they're going to understand how hard I've been having it at home. The doctor walks in, hey, how are you doing? And they're like, oh, I'm wonderful. And they don't seem like they have any problems at all. This is so infuriating and confusing for family members. Unfortunately, this is something that happens quite often. And the most frustrating part about it, at least it was for me when I was caring for my mom and dad, is that the person who is witnessing this, the person who is not there all the time, the doctor, the other family members, they leave that interaction and they will likely maybe even tell you, oh, they seem like they're doing pretty good.

16:48Things seem to be going pretty well. And you're left thinking, what the heck just happened? Who is that person anyway? That is not my loved one. My loved one does not act like that most of the time. And all you want to do is say, come live at my house for 24 hours and see how it really is. So here's what's happening here. It's almost as if the person with dementia gets pulled or switches onto something called like a host mode where they are hosting. They slip into the short socially familiar roles that are socially acceptable for brief interactions. They smile. They know how to greet somebody and say hello.

17:23They give familiar answers, maybe a little bit of small talk. They don't really get into anything deep, but they know how to say little things on the surface that make things seem like they are not as bad as they are. Like, oh, things are okay. Oh yeah, things are pretty good. Uh-huh. And they smile and they laugh. And it's like, they're not really giving any depth, but they're also not giving away that there's a lot of issues. And with show timing for a 15 minute visit or a 30 minute visit, they can look remarkably good. They can fool many people on the surface. So the person who is doing the most care, the primary caregiver, you, the careblazer, you are the one who sees the worst of the worst, the irritability, the confusion, the agitation, the behaviors, all the things that they struggle to do on a daily basis.

18:16You are the person who sees all of that. And most other people will not see that. What I would recommend here, especially when it comes to doctor's appointments, is do not rely on the appointment to relay the whole story or to give all the details. In that appointment, the doctor may not get a good idea of how bad things really are. And this is where you being as factual and concise as possible is really helpful. So writing down on a piece of paper with very specific examples, not a big paragraph or anything, but just writing them down ahead of time and being able to provide it to that doctor or healthcare provider privately if possible.

18:53Many healthcare systems now have electronic health records where you can submit it in writing ahead of time so that they're clued in into what's going on. Do not make your loved one's entire treatment plan based on how they show up during a short 20-minute appointment. That would likely be very disappointing for you. Let's bring all five of these together. We have sundowning. The brain has a harder time managing confusion and stimulation later in the day. We have shadowing. Your presence may be functioning as a reassurance and an orientation in a world that is increasingly more confusing and unfamiliar.

19:30We have hiding and hoarding, where there might be a need of security and control underneath their behaviors of collecting things. Then we have time shifting, where the person's internal sense of where they are in life does not match the calendar on the wall. And finally, we have show timing, which is basically where a person is able to pull together short, familiar social scripts and cues for short interactions with somebody. And it does not reveal the impairment they are having in their daily life. These five behaviors look completely different, but they all come back to something I want you to remember, which is basically the behavior makes more sense.

20:15when you stop looking only at what the person is doing and you start looking at what the brain might be trying to do. That brain is trying to compensate for a world that they're not really making sense of. Understanding the behavior, that's step one. But understanding what is underneath the behavior, that's one thing. But then what do you do with all of that? Okay, your loved one is pacing at eight o 'clock at night and won't go to bed. Your loved one is following you everywhere and you can't even get a shower. or your loved one is insisting they need to go home and it's the middle of the night.

20:49So if you're really looking for, I need more brainstorming, I need more help. What do I do in all these strange situations? There are basically two things you can do. One, you can grab this book, The Dementia Care Toolkit, where literally you can open it up. There's three sections in here. One is entirely on behavior strategies. You can just point to a behavior strategy and say, I will try this. I will try this behavior strategy because I don't know what to do in this situation. Let me see if this one will work. That is available right now. Just go to Amazon, go to Barnes & Noble, look for the Dementia Care Toolkit.

21:21That's what you can get. The other way that you can do it, if you're looking for more personalized approach, is to look into our Care Collective Program where we come together and we talk. You talk with other care blazers. You talk with other experts. You can talk with me and we listen to your situation specifically and give you ideas for what you might be able to try. This is not a replacement for healthcare. Absolutely, you have to keep going to your healthcare providers, but it's just a bridge in between appointments to help you with those difficult, confusing times that you would like an idea of what to try.

21:55You can learn all about both of those things at our website, www.careblazers.com. Now, Careblazer, have you seen any of these five behaviors with your loved one? Let me know in the comments below. And if you missed the first video where I talked about five strange dementia behaviors explained, I'm linking that below too. They are five completely different behaviors from what we covered today. As always, I am sending you so much love. Thank you for what you are doing for your loved one with dementia. Bye.