[0:00] [Music]

[0:07] and some new faces. So this evening we are incorporating a dementia live

[0:12] simulation. So basically what we're going to do is kind of divide the group

[0:15] into half and half of you are going to hang out with me for the first session

[0:20] and we're going to really dig into and talk about understanding common

[0:24] behaviors when it comes to dementia and how we can best respond to those

[0:28] behaviors. while the other half of you go with my friend Judy who's in the

[0:32] back. She is with Hospice of Southwest Ohio and she's going to be leading you

[0:37] on um a dementia live simulation. And this is meant to be an experience that

[0:41] helps to give you um a direct experience and empathy to understand what it's like

[0:46] to have your your processing and your senses um altered by dementia. So, it's

[0:52] going to give you a really direct way to kind of understand what someone might be

[0:55] going through. So, when you head back with Judy, she's going to give you the

[1:00] opportunity if you kind of want to observe and you don't want to tell us in

[1:04] front of the whole room, but maybe you just kind of want to sit back and watch

[1:07] and not participate, that's okay, too. Um, but for now, we are going to divide

[1:11] up um half and half. So, I'm going to ask that this part of the room go ahead

[1:16] and join Judy in the back and we're going to take you out into the hallway

[1:20] and close the doors and she's going to get you ready for that simulation.

[1:24] » Thank you. You'll come back in about 25 minutes and you get to hang out with me.

[1:32] » You're welcome to leave your belongings here. Whatever is more comfortable for

[1:35] you. Um, I'll make sure Chris keeps an eye on it.

[1:40] Perfect. >> Chris, you need to call Amberly if you

[1:44] have a problem. Which side of the Amberly do you call the ad?

[1:49] » You're going to follow me back here.

[1:53] We are going to need two hands for this

[1:58] area. >> Close the door so she can talk and we

[2:02] can talk as well.

[2:07] » Wait for this door to close so that you don't hear any any secrets.

[2:14] » It's best to go into that simulation. You're kind of not knowing exactly what

[2:17] you expect. Creates a really cool experience for you. Okay. So, They're

[2:23] getting ready to close those doors. And I'm just going to do a quick recap on

[2:26] what we've talked about in our previous three sessions. Okay. So, tonight we're

[2:30] going to be talking about behaviors. >> I think when we met first in gosh, when

[2:35] was that March? We talked about healthy living. We talked about a lot of those

[2:38] lifestyle um choices and decisions we can make to help reduce our risk of

[2:43] developing dementia. Then when we met again, we talked about the warning

[2:46] signs. As I age, what do I look out for in myself or my neighbor, my loved one?

[2:51] you know, what are common signs of dementia and then what are those typical

[2:55] age related changes that just happen as we get older. You know, our brains slow

[2:59] down as we age, just like our bodies do. And then we talked about communication.

[3:03] So, what you're going to hear tonight is probably a little bit of familiar

[3:06] information from what we covered when we talked about communication. They kind of

[3:10] communication and behaviors really go hand in hand. So before we talked about

[3:14] things like joining someone in their reality, someone with dementia, you

[3:18] should join them in their reality because they cannot join you in yours.

[3:21] You know, they do not have the logic the way that a a healthy, you know, normal

[3:25] brain does to kind of follow any kind of clues and cues to ground them in the

[3:30] here and now. So we want to kind of join them where they are. We want to avoid

[3:34] arguing or quizzing or testing someone that will likely lead to probably not a

[3:40] great interaction. And I know I don't like to be told like you're wrong,

[3:43] right? No one loves that. So it might make someone kind of shut down. Same

[3:48] goes with someone with dementia. So we might see that lead to some behaviors

[3:52] that are related to that communication, right? We want to be really careful with

[3:56] not just our verbal communication, our tone of voice, our facial expressions,

[4:01] um our body language. So I think when I stood up your laps, I was standing up

[4:04] here and I was just telling you how excited I am to be here, right? and I

[4:08] was being sarcastic, crossing my arms, and so all the words coming out of my

[4:12] mouth sound like I'm saying, "I'm excited to be here." But communication

[4:16] comes in a lot of different forms, right? So someone as they progress in

[4:21] the later stages of dementia, middle to late stages, they're losing their

[4:25] ability to communicate their needs with with verbal communication. So part of

[4:30] the way they're going to be communicating is through their

[4:32] behaviors. So, we might at times find so and so was always sweet as pie and I

[4:38] just saw her get so aggressive or I heard words come out of her mouth that

[4:43] she never said before. You know, some uh spicier flavorful language. Right? So,

[4:48] we're seeing these behaviors as a form of communication when someone is trying

[4:52] to tell you, "I'm uncomfortable. I'm frustrated. I'm confused." And they

[4:57] can't tell you with their words. So just like we talked about with communication,

[5:01] we really want to focus on keeping someone safe and happy. So we can employ

[5:06] different strategies just like we talked about last time about, you know, kind of

[5:11] uh following them and meeting them where they are in their world, focusing on the

[5:15] feelings over the facts and making sure that we are creating a soothing calming

[5:20] environment and making them feel seen and heard with whatever emotion they're

[5:24] feeling. and then we can kind of move along maybe tell a therapeutic fib of

[5:28] and go along with where they are and then we can move on to an activity that

[5:33] they enjoy. So let's get into today. So what we're going to cover in the next

[5:38] 20ish minutes is really talking about some of those common triggers that we

[5:42] see often times for behaviors that are associated with dementia. So, we're

[5:47] going to talk about the process of how no matter what type of common, you know,

[5:51] dementia related behavior we see, we can use a process for kind of assessing,

[5:56] evaluating, and identifying some of those challenging behaviors. And then

[6:00] again, just like we did with communication, talk about those

[6:03] strategies that we can use to address those behaviors. So, I think we talked

[6:07] last time about putting on our detective hat and kind of using what we're seeing

[6:11] in our environment, what they might be trying to tell us with, you know, all

[6:14] these different forms of communication to address what might what might be

[6:18] happening. So, we'll continue and expand on that this evening. So, behavioral

[6:23] changes can have a lot of different types of triggers, right? So, even in a

[6:26] a healthy normal brain, this is the case, right? if we're um in pain or

[6:31] we're uncomfortable, maybe we're overstimulated, someone with dementia,

[6:36] and this is something that you're going to experience this evening in terms of

[6:39] processing. Um there is some gear that that'll help you understand what it

[6:44] might feel like to process many things at a time in your mind. Um so over

[6:48] stimulation can be a piece. If let's say someone with dementia comes into a room

[6:53] with 20 people all talking at once, they have a hard time following a

[6:57] conversation with one person. So, that's going to be way too much for them to

[7:00] follow and they're going to feel overstimulated.

[7:03] Or maybe they're bored. You know, sitting in front of the TV watching

[7:06] Jeopardy is not going to be a fun activity for anyone if that's all

[7:11] they're doing. And that's including someone with dementia. So, having

[7:14] dementia does not mean that we don't need to be continuously stimulated. We

[7:19] want to make sure that they have engaging activities that they can

[7:22] participate into in a safe way. Any person wants to have some some meaning

[7:28] and purpose in their life, right? Even if they have dementia. So that might

[7:32] mean, you know, if they always did all the laundry, they always took care of

[7:36] the household, maybe that means they're they're helping fold towels, right?

[7:41] Let's do something that can give them a meaningful activity. Even if they're not

[7:44] going to do it the way you want it done, even if you're going to have to refold

[7:47] those towels later, right? We want to give them something that's going to help

[7:50] stimulate them and find that balance. We can also um be fearful or frustrated.

[7:56] So, attempting to communicate and not feeling like someone is receiving or

[7:59] understanding or being in an environment that can be disorienting or or confusing

[8:04] for you can lead to some of that fear. Unfamiliar surroundings, it gets more

[8:10] challenging for an individual with dementia to leave the house. You know,

[8:12] that's mo more than likely going to be the final kind of comfort zone that they

[8:16] have. So when you take them out of that familiar space where they have um some

[8:21] understanding of where things are and they have a little bit of routine, it's

[8:25] going to be much harder for them to kind of regulate and process what's going on

[8:29] around them. And then complicated tasks that can be really disorienting and

[8:34] cause some behaviors as well. So when I say complicated tasks, I don't mean

[8:38] changing the oil in your car. I don't, you know, I guess maybe I could do that.

[8:43] Um maybe. Um, we're talking about things that are like brushing your teeth. You

[8:47] know, if you were to have an alien come down from space and you had to explain

[8:52] the process of brushing your teeth, it's a really complicated step-by-step

[8:56] process, too. You could write down all the directions for brushing your teeth

[8:59] and it would probably be a few pages. So, it's not as intuitive as it seems.

[9:04] It's just something that we got used to because we do it all the time. But all

[9:07] of that information over time is is deteriorating for someone with dementia.

[9:12] So even a simple task that we would assume is simple like brushing our teeth

[9:16] can become complicated. So when we're looking at understanding

[9:20] and addressing the behavior at hand, no matter what the trigger was, here's kind

[9:24] of the line of thinking that you want to employ. So we want to detect and

[9:28] connect. So you know, what are we noticing in our environment? What are

[9:32] they maybe trying to tell us about, you know, the environment or what might be

[9:36] irritating or agitating them? Am I noticing that they're they're kind of

[9:41] tugging at maybe a sweater or are they kind of itching at their neck? Maybe I'm

[9:46] going to check the thermostat, right? How is the room stuffy? Can I open a

[9:50] window? Is there a fan I can turn on? So, we're going to kind of try and our

[9:54] best to detect and connect with what's going on. Address their physical needs

[9:58] first. So, I mentioned that safe and happy, right? Safe is first. So, we want

[10:02] to make sure, are they in any kind of danger? Are they in any kind of

[10:05] immediate physical pain that we need to address? Do they need medical attention?

[10:10] Right? So, if that's not the case, then we're going to move on and kind of

[10:13] assess their emotional needs. So, what might they be trying to tell me by um

[10:19] you know, their agitation or their irritability or maybe they're angrier

[10:24] than they normally would be in this scenario? What else might be going on?

[10:29] Is it something where I'm trying to help them put their shoes on, I'm noticing

[10:33] them wincing in pain? Maybe they have an ingrown toenail that they can't tell me

[10:38] about. Right? So, try and use what you're seeing in when I do this, I'm

[10:42] noticing this. And try and figure out what might be going on behind the

[10:46] scenes. And then when you do notice that trigger that causes that behavior, it's

[10:52] not the end of the world. It doesn't mean you're a terrible person. Doesn't

[10:54] mean you're a bad caregiver. It might just mean you learn some new

[10:58] information. That might change over time. Sometimes

[11:02] someone might love Elvis and then they get to the point where they get to a

[11:06] stage in this disease and they hate Elvis. They despise the sound of Elvis.

[11:11] If you turn on Elvis, so help you. Like they are going to throw a fit and they

[11:16] might throw some things. So, okay, we no longer like Elvis. During my next visit,

[11:21] I am not going to turn on some Elvis, right? So you can really use what might

[11:26] even feel like a hard situation and figure out how you can adjust for next

[11:30] time. Okay, I think I got a little ahead of

[11:34] myself for the sake of time. So this just goes into a little bit more details

[11:37] on that detect and connect. Again, we're joining them in their reality. We're

[11:41] trying our best to see the world through their eyes. So in doing that before we

[11:46] intervene we're thinking about all the who, why, where, how, what's taking

[11:51] place, what take place, what took place before we saw this behavior and then

[11:56] kind of what's going on after. And then make sure that, you know, we talk with

[12:00] communication about that approach. So we want to make sure we are approaching

[12:04] calmly. Someone even in a state of, you know, any kind of heightened emotion, if

[12:09] you're being calm, they're going to start to over time match your tone. So,

[12:13] you want to be a calm, helpful person and come back to those communication

[12:17] strategies we talked about. You want to approach from the front. You want to

[12:20] make eye contact and you want to be at eye level. So, I don't want to pick on

[12:24] anyone, but with all of you in a chair, if I'm approaching you from the front,

[12:29] but I'm not making eye contact and I don't have your direct line of sight, I

[12:35] want to be on your level. If I'm up above someone with dementia, let's say I

[12:39] stand in front of your your TV show, right? that person with je with uh with

[12:44] dementia might just see me as an obstruction. They don't might not think,

[12:48] "Oh, this person's trying to talk with me and I should look up and make eye

[12:52] contact." They might just say they're blocking my show and move their head

[12:56] around you. So, you want to make sure that you're on their eye level, that

[13:00] you're approaching calmly and slowly and getting their attention so that you

[13:04] don't startle them um and then have a a negative reaction when they're when

[13:08] they're afraid. right here. >> So, addressing their physical needs,

[13:12] we're talking about those medical issues. Maybe they're hungry or thirsty.

[13:16] I know I am just generally speaking a hangry person. So, I am constantly

[13:20] trying to say like, okay, I'm feeling a little cranky. I'm feeling a little off.

[13:25] Have I had some water? Do I need a snack? Same goes for here. Let's think

[13:29] about those, you know, immediate basic needs. Um, lack of social interaction.

[13:34] Maybe it's too little or too much. And then kind of look for some of those

[13:38] environmental triggers, too. You know, maybe the sun's shining and it's too

[13:41] bright and it's it's distracting them from the thing that you're trying to

[13:45] tell them. Or maybe the music is too loud while they're trying to eat and

[13:48] they can't focus on both at once. Yeah. >> I guess I'm having a problem with you.

[13:55] » Mhm. Tell me more. >> You're saying is not good. It is

[14:00] absolutely

[14:03] » being an educator. >> Yeah. All these students that I met,

[14:07] college students, young students, they don't have clue. They don't have even

[14:14] the knowledge of if an old man want to drink or it's cold or is hungry or want

[14:19] to It is a thing. >> Yeah. Yeah. It's really hard. So,

[14:23] » it is a thing. >> Yeah. And all these right now as a grown

[14:28] up to do for other people that have to be

[14:32] as >> all kids I know you look at the

[14:37] » Yeah. You know where the kid I feel like the younger people probably you know I

[14:42] remember being 20 and being reckless and thinking I was going to live forever. I

[14:46] ate whatever. I drank whatever. We'll leave it at that, right? I'm not going

[14:50] to say anything else. >> You're a little more reckless. you think

[14:54] you'll never be older, right? And so this is something that we see is

[14:58] happening later in life. They don't need to worry about it. When it affects them

[15:02] is when it's their their grandparents, their family members, their loved ones.

[15:06] So this is an increasing problem that's going to affect people. And I know when

[15:10] I was in my 20s, my grandpa was living with Alzheimer's and I got really

[15:14] fearful. I didn't know how to interact with him when I visited. and I didn't

[15:18] have any tools to know, okay, what do I do if he says something or what what do

[15:22] I do if I show up and he doesn't know who I am? I can still have a meaningful

[15:27] visit with him even if he doesn't know my name. Who cares? But at 20, I did not

[15:31] know that. So, I think like we got to increase that education for everybody

[15:35] » on the lower level, not >> absolutely. Yeah, give them my number.

[15:40] If you meet any of those young folks, I'm happy to talk to them. We go

[15:43] through. So, Judy, you'll meet Judy. We um train all the students at Butler

[15:47] Techch up in Westchester in rotations every fall. Before any of those kids

[15:52] graduate from that school, those young people, they have all had some dementia

[15:56] education. So, we are working on it. >> Even the caregivers will come to help

[16:01] you. >> Yeah.

[16:04] » Yeah. And we do staff trainings, too. So we are, you know, if you know of

[16:08] organizations or people that need resources, give them my information

[16:11] because we are trying to bridge that gap because we know what that's that's

[16:14] that's real. So thank you for bringing that up.

[16:19] Okay, I'm going to move us forward to thinking about those emotional needs. So

[16:22] we talked about focusing on the feelings over the facts. I'm going to say that

[16:25] over and over again. Use what you know about that person's um preferences. So

[16:31] this can help with different types of interventions when they are in that

[16:35] heightened state. So if you know that they love the smell of lavender, they

[16:40] were always an avid gardener, maybe we're incorporating the scent of

[16:44] lavender into that room when we visit. Is it in the form of, you know, some

[16:47] Freze fabric refresher or whatever, or are we lighting some candles? How can we

[16:51] kind of help to set that tone? Um, maybe they really love baking, you know, so

[16:57] can I get them out of this heightened state and then kind of deflect and move

[17:02] our conversation to an activity that they enjoy, you know, even who cares

[17:06] what the cookies look like? Maybe we're just mushing some dough around, but how

[17:10] can we kind of move them to a more soothing activity that they enjoy? Do

[17:14] they love walking in nature? Do they love looking at the birds? Right? How

[17:18] can we incorporate some things we know that they like to help bring them back

[17:22] to that that um less heightened state? And then again, you're not going to get

[17:28] it right every single time. When I look back at when I was 20 years old visiting

[17:31] my grandpa, I know I did it wrong. I know I, you know, ask him if he

[17:37] remembered me, right? Um so you want to make sure that you're going back to what

[17:41] you've talked about and what did I notice? What didn't work? What did work?

[17:45] What should I avoid doing next time? What did I notice? And how can I The

[17:50] room is always stuffy. That room where I visit him is always stuffy. I'm gonna

[17:54] arrive 10 minutes earlier and I'm going to see if we can open some windows. Or

[17:58] maybe I'm going to bring one of those little clip-on fans that can sit on the

[18:02] side of the table that can blow and circulate some air or bring him a really

[18:06] cold drink that he loves. Right? So, how can we make this better next time? What

[18:10] went well? What didn't? And how can I make those adjustments?

[18:16] I think it's a bit too late. >> You think it'll be too late?

[18:19] » Yeah. So, I know growing up at seven grand

[18:26] and >> we didn't need to ask.

[18:29] » Mhm. >> It was there.

[18:31] » Yeah. Yeah. >> Automatically it was there. We didn't

[18:34] have to be talking to that. I'm sure sometime we

[18:38] » Yeah. >> But it was there and we were aware of

[18:40] it. >> Sure.

[18:42] I think having those generations together can make a huge difference. So

[18:46] I hope we kind of swing back in that direction, right?

[18:49] » Yeah. Yeah. >> Okay. So when we think about we're going

[18:53] to kind of move so through some specific behaviors very quickly for the last few

[18:57] minutes just so you can get an idea of what these look like. We're talking

[18:59] about anxiety or agitation. These are some of our common behaviors. So when

[19:03] we're talking about this, we're looking at someone who's u maybe experiencing

[19:06] restlessness or pacing, distress, and over reliance on caregivers. Um so this

[19:12] can kind of come in the form, if you're familiar with sundowning, maybe someone

[19:16] who um people do get pretty restless and start to pace at specific times of day.

[19:22] We want to think again, use what we know about this person. What do they used to

[19:26] do at 5:00 p.m. every day? Maybe they're at the window waiting for so- and so to

[19:31] get home from work, right? or waiting for the kids to get off the bus. So, use

[19:35] what you know about the individual and their life and their history to kind of

[19:39] um have a little bit more understanding of where they are and what might be

[19:42] going on that could be causing that anxiety or or causing that pacing. They

[19:46] might just be kind of stuck in a different time and place.

[19:51] » Confusion or suspicion, not recognizing familiar people, places, or things. This

[19:56] can show up in the form of accusing others of theft, infidelity, and other

[20:01] scenarios. So, we often see that, you know, we might lose track of things that

[20:06] we've donated, right? Um, I gave that tea set away six months ago, but now I'm

[20:11] looking for that tea set and what happened to that tea set, right? So,

[20:15] this can get kind of common. And again, we're not looking to argue or logic our

[20:20] way through a conversation with someone who's in this state of confusion or

[20:24] suspicion. We want to make sure that they're we're hearing them out. You're

[20:27] right. I can't believe that T set's gone. That's really, really frustrating.

[20:32] I'm going to help you look for it. Why don't we I'm going to spend the next

[20:35] time I'm going to go down in the basement. Why don't you make yourself a

[20:37] cup of tea? I'm going to go down in the basement and look around for that tea

[20:41] set. Just let them feel validated that they're going to move along. You're

[20:45] going to move into a different activity and they're going to stop fixating on

[20:48] that tea set, right? We just got to kind of move them out of that state and make

[20:52] sure that we're not shove, you know, you gave that tea set away. What if you

[20:56] don't even remember giving it away? that's probably going to make them feel

[21:00] that they're not being heard, right? And they might be kind of offended that you

[21:04] don't believe them and that you're not siding with them, right? So, we want to

[21:07] make sure that we're we're kind of going along with what they're feeling.

[21:11] Aggression, aggressive behavior. This can look like physical aggression or

[21:16] verbal aggression. So, it can appear out of what feels like no reason whatsoever.

[21:22] What brought this on? Um or it can come following a trigger. Um, it kind of

[21:27] depends on the person, but again, we want to kind of use what were some of

[21:31] those triggers that we may have seen or sometimes it can appear as, you know,

[21:37] the paid caregiver that came in the room to help give them a bath looks like

[21:41] someone they went to high school with that they hate, right? That it can be

[21:44] just as simple as that. So, how can we work to diffuse that situation? How can

[21:49] we maybe step out and let that person take a breath and come back in and try

[21:53] again? So, um, again, we want to kind of try and identify what we might be seeing

[21:59] and why. So, often times aggression specifically

[22:04] is not dangerous. Um, but it can be really scary and a little stressful. Um,

[22:09] occasionally the person can be a danger to themselves or another person. We

[22:13] might need to take some safety measures. It depends on the person. We want to

[22:17] make sure that before we're deciding a more aggressive um intervention here

[22:22] that we're talking with their doctor or um you know calling your safety officer,

[22:27] calling 911 and getting some help, calling our helpline and getting some

[22:30] help. With repetition, we're talking about someone saying something over and

[22:35] over again, repeating words, maybe asking the same question over and over

[22:39] again, right? We talked about that with communication. So, this is something

[22:42] that we see often. You can honestly use it as an opportunity to try again. If

[22:47] you feel like you didn't, you know, respond properly last time, well,

[22:51] they're probably going to come back in 10 minutes and and say the same story.

[22:54] So, there's always that opportunity to kind of figure out how you want to, you

[22:58] know, improv. You're kind of you might be having a little bit of a one-sided

[23:03] conversation, but again, we just want to make sure that they feel heard. And then

[23:07] what I really want to note with wandering because I think with a lot of

[23:11] these behaviors, we see them most often in the middle to later stages of the

[23:15] disease, further along in the progression.

[23:18] Wandering can happen in the earlier stages as well. And this can be really

[23:22] scary because if we think about someone getting lost, they can be behind the

[23:26] wheel of a car. They can be on foot out in the heat or on a really busy road.

[23:30] And they might think that, oh, I'm a little turned around and I think I'm

[23:34] just going to go this way. and then they get more disoriented and more

[23:37] disoriented and they're kind of digging the hole deeper. So this I wanted to

[23:41] note that this can happen at any stage in the disease um without any kind of

[23:46] warning. So it might not be that you're noticing someone, you know, walk out of

[23:49] the house in the middle of the night who's in those more advanced stages.

[23:53] This could be someone who is in those early stages, maybe just showing some of

[23:57] those early warning signs we talked about. But we do know that 60% of people

[24:02] with dementia will wander at some point. So, this is something we want to be

[24:05] aware of and and kind of be kind of planning what what will we do? What kind

[24:10] of safety measures can we employ um to combat wandering um when or how that

[24:15] happens? >> So, I think Judy is probably wrapping

[24:19] up, right? Okay. I talked so much. I cannot believe I did that in that amount

[24:23] of time. I know that was really quick. Does anyone have any questions before we

[24:28] kind of rotate out?

[24:32] If you're an old person >> and then someone did take something

[24:37] away, >> I'm sure they still

[24:42] » don't believe you because they >> they think you don't know what you're

[24:46] talking about. >> Yeah. I mean, I think that might be just

[24:48] kind of a different a different scenario entirely, right?

[24:52] » Yeah. We want to make sure that, you know, Mason was talking before about how

[24:56] people with dementia can be especially susceptible. So, we want to make sure

[25:00] we're we're on the lookout for them. How can we, you know, if they do have

[25:03] precious belongings that we we do worry, we want to make sure they feel reassured

[25:07] that they're safe. Okay. How can we make sure that those items are secure? You

[25:11] know, we can we can kind of mitigate that a little bit.

[25:14] » I say anybody that's ever been around a person with dementia, everything you've

[25:19] said here tonight is exactly. >> Yeah. Well, thank you for pointing that

[25:24] out. Yeah. >> Every step by step.

[25:27] » Yeah. And you know what's what's really hard is that it can look so different in

[25:32] in so many people. You know, those behaviors can look different. Um so

[25:37] there's no perfect road map. So having some examples and talking about it more

[25:41] openly will give people a little bit more guidance on on what you can do. So

[25:46] thank you for saying that.

[25:52] [Music]

Amberley Village Health & Wellness Series, Session 4

Transcript