Glossary of Essential Dementia Behaviors and Symptoms: Part II

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back to another brand new episode of The Truth Lies in Alzheimer's Show. I'm Lisa Skinner, your host. As promised, I'm bringing you part 2 of the glossary of common behaviors living with dementia. We covered quite a few of them last week. I'm going to continue today with where we left off. And in case you missed last week, I just wanted to bring to your attention that these are all common behaviors and symptoms that we see with people living with Alzheimer's disease and one of the other brain diseases that causes dementia. They overlap. Not everybody displays every single one of these behaviors and symptoms that I'm covering in these two episodes, but a lot of them are very common. The point being that you know about them so you can recognize them, and you know that they are all part of living with dementia. So I left off last week with a behavior that we call psychosis. And the things that you want to look for with psychosis is somebody having a hallucination, a delusion, or acting paranoid, like accusing somebody of stealing their possession. My grandmother had hallucinations, delusions, and paranoia. And when I went to visit her, just about every time she would tell me about these people that would break into her home and they were stealing her jewelry. And one time she showed me, she brought me her jewelry box and it was locked, and she wanted to prove to me that everything in the jewelry box had been stolen. So she insisted that I break the lock on her jewelry box. So I did, and when I opened it, she was right, there was nothing in that jewelry box. And, you know, I just came to the conclusion that she had unlocked it one day, taken things out, hidden them somewhere, and then locked it and forgotten. And then believed in her mind of minds that these men that she talked about frequently had gotten a hold of her personal, um, jewelry, her expensive jewelry, stolen it, and then tried to cover it up by re-locking her jewelry box so she would think that all was well. That was not the case, and this is actually really, really common, and I talked about this last week, but it's just under two different terms. Repetitive behaviors. Are quite common, and you may see things like saying or doing something over and over and over again, such as repeating words, questions, activities, telling the same story over and over and over again in the same conversation, and This behavior really drives a lot of caregivers and family members kind of crazy and nuts. It's like, would you stop the broken record? But this is a very common behavior that we see. I can't tell you how many people I witnessed in the memory care units that I had access to. That they did this, and it can be pretty frustrating for caregivers and family members. But I will tell you how to stop the hamster from running that wheel. There's rummaging, which is a synonym to hoarding. A lot of times you see Rummaging is a part of hoarding. They're looking for things to take so they can hide. So, um, the definition of this is searching through things in order to find an object of interest, often causing disorder and also causing confusion. Sleep disturbances are very common. And the reason why this happens is because people living with dementia, their circadian rhythms, in other words, their internal clocks, are completely thrown off. People who are awake during the night might actually think it's daytime and they're supposed to be awake, or vice versa. So you may see this with a lot of your loved ones or people you're caring for. Where they're completely off-kilter with their circadian rhythms and they're active and awake in the wee hours of the night and wanting to sleep during the day. So those signs that you wanna look for is sleeping more or less than usual, interrupted sleep patterns, unusual sleep patterns such as sleeping during the day and awake all night, suffering from insomnia, and/or awakens frequently at night, and they may get up and wander all over the place. Then we have stranger in the mirror. This is a very unusual phenomenon that people aren't aware exists with dementia, but it is very common. Those signs may include passing a mirror and thinking that someone else is in the room. In other words, they don't realize that they are the person in the mirror because oftentimes the way the short-term memory short-circuits and malfunctions is they believe that they've gone back into a previous time period of their life, and when they look in the mirror, they're not seeing their true reflection. They're seeing a younger version of themselves, so they think it's a stranger. This happened to my uncle. He's one of the stories in, in my book, and my aunt ended up telling me this story, and I thought it was so cute. That he came upon a full-length mirror in the hallway one day and was talking to the mirror saying, "Oh, I don't know you. Who are you?" And then went into the living room, was telling my Aunt Nancy that there's some stranger that's visiting them. "What's his name?" And Nancy said, "Oh, his name's Harold," which happened to be my uncle's name. And he carried on this conversation for months with this guy, talking to him about everything under the sun and giving him, trying to give him cookies. And it's a really cute story. And my aunt ended up going to a support group where she learned that this was a real thing called stranger in the mirror, and they recommended that she either take the mirror down or cover it up with a towel or a sheet or something like that. So she ended up removing it, and my uncle came to her one day. She goes, "Well, I guess Harold moved on because he's not coming to visit me anymore like he did for so long. I'm gonna really miss that guy," because the mirror was gone and he was no longer experiencing the stranger in the mirror. So with my uncle, the story was harmless and very, very cute, but it can present really serious episodes of fear and panic in people, especially if a caregiver is, you know, trying to take them into the bathroom to give them a shower and they pass by the mirror. And they see the reflection of themselves that they don't recognize, they can actually believe that that's a stranger going to watch them disrobe and take a shower and then absolutely refuse. So if that ever happens to you, you'll need to know that stranger in the mirror is a real thing. It actually exists, and if you know about this, and all of a sudden your person just absolutely digs their heels into the floor and refuses to take their clothes off, it might be because they don't recognize themselves in the mirror and absolutely will not disrobe or continue with the showering process while a stranger is watching them. So you need to know that this exists to know that that might have been the trigger. Sundowning. Most of us have heard of sundowning, and sundowning does not necessarily mean that it always and only happens at the end of the day. That's what it's called, but it can actually happen anytime during a 24-hour period. But what those signs look like is the person all of a sudden becoming, going into a state of confusion that is typically associated with the end of the day or into the night, but it can occur at any time. A person's personality may change to becoming demanding, suspicious, disoriented, and just getting upset out of the blue. That all falls under sundowning. But they could be displaying these symptoms and not actually be technically sundowning. Like I said, all of these symptoms and behaviors overlap. No two people experience the journey of dementia the same, but the important thing is to know that these are all part of the disease, and you may see any one of these during the progression of their disease. Suspicion. You can see behaviors that include doubt, mistrust, misgiving. A person with dementia may doubt the trustworthiness of another person and believe that their intentions are unreliable, unfavorable, or menacing. It doesn't necessarily have to mean that they believe you stole their jewelry or their belongings. It can look like these other behaviors. They doubt everything you say. They don't trust you. Another common behavior that we see is Unusual clothing. People who live with dementia cannot discern between what's appropriate clothing to wear and what's inappropriate clothing to wear. So they don't always put on a coat if it's freezing cold outside because they don't have the ability to reason and use sound judgment. So they may actually end up wearing inappropriate clothing for the weather or the occasion. Just like, you know, a heavy coat in, in the heat of the summer, or clothes that don't coordinate or match anything else a person is wearing. I've seen people put pants over their heads. I've seen people put pants on backwards or try to put them on upside down. The important thing to understand here is nothing really makes sense to them the way it did when their brains were healthy. So it's— they do all sorts of bizarre things that we as healthy-brained people are unaccustomed to. Just know that it's their brains changing, their brains malfunctioning, and you never know what you're going to end up with. So providing clothing that's easy to get on and off with less buttons and zippers and fewer choices makes it easier for them to make sense of their world. Wandering. And there are many different, uh, subcategories of wandering which I'm going to go over with you right now. So just in general, wandering includes becoming lost even in familiar places or intrude on someone in inappropriate places, you know, walking in on somebody while they're going to the bathroom, walking in on somebody while they're being given a shower. But the other types of wandering that you should be aware of include what's called Aimless walking. Now this refers to a type of wandering where a person walks aimlessly around without any specific purpose or goal. They're just constantly on the move. It's harmless. Just make sure that it stays harmless and they don't have the opportunity to put themselves in harm's way. Now there's another term that is synonymous with wandering called checking, and this refers to a type of wandering where a person is repeatedly seeking the whereabouts of a caregiver or another person, especially a person that they are familiar with, and it's usually based on comfort and security. Then there's chronic exit Seeking. This refers to a type of wandering where a person is continuously seeking a way out of their current environment. They typically have an agenda or a purpose to get somewhere or go somewhere else, such as shopping, to work, to find someone, etc. One of the most common scenarios that I hear is I wanna go home, take me to my home. And you don't know what home they're talking about. That's a chronic exit seeker. They're determined to find whatever it is they are determined to find, and nothing is going to stop them. There's excessive wandering. This refers to a type of wandering where a person is constantly on the move for an abnormal amount of time, and typically it's throughout the entire day. Others wander for what's called an inappropriate purpose, and this is very, um, similar to one of the other ones that I have already mentioned. Uh, it refers to a type of wandering that invades the privacy of another. Then there's nighttime walking, refers to a type of wandering in which a person frequently wanders at night. Remember the circadian rhythms in people with dementia? In other words, their time clocks are completely thrown off. So this nighttime walking is not an unusual occurrence. Then there's a term called pottering. This is a type of wandering, and it's where a person may walk around and throughout their surroundings, possibly trying to accomplish a work-related task such as cleaning, doing laundry, gardening, etc. That actually is a type of wandering. It's called pottering. And trailing is another common form of wandering. This is where a person follows closely behind another person, like let's say two different residents living in a memory care wing, and one constantly follows another resident. It's almost like you know, a shadow. Withdrawal signs may include removing themselves from hobbies, from social activities, projects, and also removing themselves. They won't participate in conversations. If you know, withdraw is similar to depression, but they actually withdraw themselves from social situations. They may ask fewer questions. They may start fewer conversations. You'll notice that they are— that they start to make less eye contact and/or may seldom comment or respond to others. So in conclusion, I want to just leave you with these further thoughts. Everything that I've shared with you in the first episode and today's episode, just realize, be mindful that all of these behaviors do have an underlying reason. People are not intentionally trying to be mean or difficult or combative. A person with dementia will continue to experience and express their emotions but will gradually lose the ability to verbally communicate them. There is always a cause and a result of these behaviors that we see. However, these behaviors can actually be modified. Behaviors are beyond the control of the person with dementia. It is the damage to the brain that causes them to act and believe the way they do, and therefore will be much easier to identify the underlying problem with an in-depth understanding of needs and situations that can trigger extreme reactions, the symptoms I've just shared with you, and the behaviors. So know these, learn to recognize them, and then starting in the next series, I am going to share with you common triggers of these behaviors and symptoms that we see with people living with Alzheimer's disease and dementia. So that'll do it for us for this episode today. Again, I'm Lisa Skinner, the host of Truth, Lies Alzheimer's Show. Thank you again for being here. I appreciate all of you so, so much and look forward to having you join me in upcoming episodes to learn more about living life with Alzheimer's disease and dementia. So take care for now, and I will see you back here soon.

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