Living with Dementia: A Caregiver’s Guide w/ Dr. Heather McKay

The Alzheimer's Association estimates that 16 million Americans provide unpaid care to people with dementia-related diseases. Special guest Dr. Heather McKay helps us recognize the common symptoms and behaviors that are caused by dementia, understand how the progression of dementia affects the someone's skills and abilities, and learn how to take specific actions to improve safety for both caregivers and those living with dementia. Heather has been named the Alzheimer’s Foundation of America’s “Dementia Care Professional of the Year” and collaborated with the National Association of State Veterans Homes, Armed Forces Veterans’ Homes Foundation, AMVETS Service Foundation the Air Force Sergeants’ Association to produce the award-winning caregiver training video series Dementia Care for America’s Heroes. Pete Koch: Hello, listeners, and thanks for joining us for another episode of the MEMIC Safety Experts Podcast. Today's topic will touch us all in some form and another, according to the W.H.O. more than 50 million people worldwide have dementia and there are nearly 10 million new cases every year. In the United States alone, 5.8 million Americans are living with Alzheimer's, which is a form of dementia. And by the year 2050, that number is expected to almost triple to 14 million. The Alzheimer's Association estimates that 16 million Americans provide unpaid care to people with dementia related disease. And I expect that many of you listening out there know someone have a loved one or are caring for someone with dementia. My grandmother passed just days shy of her 100th birthday from complications related to Alzheimer's disease, going from the matriarch of our family to not recognizing her daughter's grandsons, great granddaughters and finally becoming unresponsive in a matter of three years. Those years were full of challenges for my parents, who were the primary caregivers for my grandmother when they are no longer able to care for her medically. They placed her in a nursing facility. My mom would visit her every day and I recall when my family would come to visit, the person my grandmother would remember most easily would be my mom. Many times, my grandmother would look at us with a friendly, but really quizzical expression and turn to my mom and ask, Who have you asked to come visit me today? Very surprised. And there were other times when she would react even more surprised and sometimes frightened, when she would turn from my mom to see me standing on the opposite side of the bed where I'd been there for the last couple of hours, or turn to my mom and ask when they would be bringing her home. Even though we had to sell her home more than a year prior, because this disease is so pervasive and the onset can be pretty slow, stripping away the memory capacity and finally function. Many of us see it as a tragic natural part of the aging process. However, it's a disease and not a natural part of aging. And while many diseases extract a heavy price on the patient. Dementia is one that takes its toll on the patient caregivers and especially the family. It's a disease that keeps escalating as well. Between 2000 and 2017, deaths from heart related disease decreased by 9 percent, but the deaths from Alzheimer's alone have increased one hundred and forty five percent. And unfortunately, regardless of medical advances so far, there's no cure. So, while that may have been a pretty bleak picture, there's still hope there's new information and strategies to help us care for and understand this disease and its effects. And so, for that hope today to help us make some sense of dementia, its effects and offer some insight into the care strategies. Is Dr. Heather McKay. Dr. Mackay is an occupational therapist, dementia care specialist and international trainer and speaker. She provides caregiver, education and consultation on topics related to dementia and Alzheimer's care. In her research, Heather designed and tested a new educational program for dementia care teams, which facilitates teams resolving Real-World challenges and will be useful in developing a more effective dementia care workforce. She is a manager with partnerships for Health in Hillsborough, North Carolina, and has collaborated with the National Association for State Veterans Homes, Armed Forces, Veterans Homes Foundation and the Service Foundation for Air Force Sergeants Association to produce the caregiver training video series Dementia Care for America's Heroes, featuring family caregivers in the Long Island state Veterans Home. The veteran series received the 2015 National Caregiver Friendly Award in 2016, the Alzheimer's Foundation of America named Heather. Dementia Care Professional of the Year for her dedication and devotion to serving individuals living with dementia, their families, professionals and her community. In that same year, Heather collaborated with MEMIC to produce a webinar series titled The ABCs of Dementia: A Caregiver's Guide and our policyholders’ response to that training has been truly overwhelming. So, Heather, welcome back to MEMIC. And thanks for coming on to the podcast today. Heather McKay: Peter, it's a treat to be with you and all your listeners. I'm hoping that they're both professionals and family caregivers listening today. And I will certainly be thinking about the countless folks that I've worked with in my consultation. But also, like you, I'm going to be thinking about my grandmother today. She lives for the better part of 15 years with the second most common type of dementia, vascular dementia. And like you, I kind of learned in that front row seat as a family. Caregiver and that always informs my storytelling. Thank you for such a nice introduction. Pete Koch: Oh, you're welcome. And we're super excited to have you here. Really. And as we found in preparation for this podcast, they've been talking to a number of different people and it's truly amazing. I mean, the stats talk for themselves, or speak for themselves in the millions of people that are both caregivers and the millions of people affected with this disease. But personally, there's so many people around me that have a loved one or have parents who are caring for grandparents or children who are caring for grandparents or parents just around in this area that I had no idea until we started talking about this. And the video series that you did for MEMIC The ABCs of Dementia: A Caregiver's Guide that's actually received not just an overwhelming response, but people do talk about it. So, if they've seen it within their work, they may have taken some of that information home because they're caring for someone at home with it, too. So it really is a it's a broad topic with a lot of different types of diseases lumped underneath dementia. But it also has a wide net of effect on everyone. Heather McKay: It does. And all of these caregivers that I've spoken with, be they professionals or family caregivers, have backed up the research and said, Heather, you know, the more we know about the disease, the more we understand why the person with dementia does what he does. Then the more ready or confident that we feel to tailor our support to actually match the person's changing skills and abilities. I'll give you an example. Caregivers have said to me in more than one way, this thing won't sit still for me. And what they mean, I know what they mean. When a husband came in and said that he was talking about his wife who has dementia and her communication, that seemed to fluctuate. Or he said sometimes it feels like it clicks, or I know I'm communicating with my wife because she understands, and she responds just like she always would. But he said sometimes it doesn't click. Sometimes it feels like she's not firing on all cylinders. And caregivers that are listening today are probably thinking of someone they know with dementia who seems on again, off again, or with good days and bad days. And it's a perfect example of something that when caregivers understand why that fluctuation happens, they can feel a little bit more prepared to support more or less at different times based on what they notice. For the gentleman sitting in the consultation visit that morning, I slid a piece of paper across the table, had two pictures of brains, one healthy brain, one with dementia, and he noticed that in the brain with dementia, it was sort of darker. And I was pointing to that darker color. To explain the fluctuations he'd noticed, I said simply just brain cells are sick before they're dead and a sick cell is unreliable, it'll fire for you one minute and quit you the next. He said That's exactly what I've noticed with my wife. And once he understood that those darker, unreliable cells were firing at different rates, sort of in different in different capacity between good days and bad days, he said. Now, I understand she has a billion fewer cells on a day that she's not feeling well vs. a day, you know, when she when everything is in line, you know, she's well-rested. She's had a good meal. Her medications are all at the right level. A billion sick cells are working for her then. It just makes me think about all of these caregivers that you've mentioned taken home bits of information from that MEMIC series to share with family members across the kitchen table because they're noticing good days and bad days. They've heard of this term called sundowning. Sundowning is when a billion sick cells closed shop when she's tired. Pete Koch: Yeah Heather McKay: And understanding that different times of the day can actually lead more or less support from those caregivers is just one example of folks learning about this disease to be better prepared to support the people they work for or their loved ones at home. Pete Koch: Yeah. I remember vividly the pictures cause that picture that you reference sliding across the table to that gentleman there at the consultation of that same image is part of the video series. And that was a striking image to see the image of a healthy brain versus a brain with dementia and the size difference and the color difference between live healthy living tissue and sick cells on the other side. And it just makes a whole lot more sense when you can put it visually. That way, you can kind of get a look inside the person to see that that they don't have as much as we have to manage the normal ups and downs of life. We all have those ups and downs of life. You get up in the morning, you're not your best until you have your cup of coffee. Well. he person with dementia, the coffee is not going to help them much because they don't have the same capacity for change or management because of those sick cells. Heather McKay: You got it. Yep. they're missing a whole lot of cells that as they die and sluff off of that brain with dementia. But those caregivers will still notice that after breakfast when her blood sugar kind of comes back up she seems to be better. And then that makes us think about how our brains work. You know, we know what it feels like to be on low blood sugar. You know, those are just little symptoms that your central nervous system is giving you when it's hard for you to concentrate, when you get that little empty feeling in your stomach or the headache starts to set in. Those are signs that you're running on empty and your central nervous system needs that blood sugar as a fuel to just live and work. Well, people with dementia are same they just have a billion, sick cells that are good for nothing on an empty tank. So, caregivers might notice those fluctuations between times of the day when blood sugar is spiking or dipping being much more dramatic. They'll also notice that in themselves, when stress goes up, brain function goes down. The same is true for a person with dementia. They just have a billion sick cells that will just close shop in a stressful situation. A lot of family members have told me as long as this daily routine runs on the predictable rhythm and we do things that are familiar to my loved one. Then I notice her stress level is lower. And she's a lot better able to do things. She's at her best. And when we see pictures like that produced in that MEMIC series, it's a strategy for me to show family members, people who don't have the same kind of medical training that I do to use pictures is a great strategy. So, I encourage folks to tap into that series if for nothing. But the pictures to help him talk about with their family members, help him talk about what they notice. That's a great strategy for a caregiver of any stripe. Pete Koch: Fantastic. So, Heather, let's back up a little bit. And I'd like to ask you a little bit about how you came to specialize in dementia care, because there's just if you think about how many people are affected by this, there aren't as many people that have such a clear path as you about dementia. So how did you get into specializing in dementia care and becoming such an expert in it? Heather McKay: Well, this story might sound familiar to a lot of health care workers. I am an occupational therapist by training. I started out as an occupational therapy assistant. I was working in the hospital enjoying my time with a team on an acute care in neurology unit, learning a whole lot about all kinds of neurological conditions and how that affected both patients, but also family members that I was needing in the hospital. At the same time, my grandmother living in western North Carolina in the Appalachian Mountains where I'm from, you can probably hear it in the accent. She was diagnosed with vascular dementia and those two lines of my life, professional and personal, merged at that time, I was understanding dementia from a granddaughter's perspective. I was watching my dad and his sister, my aunt, the primary caregivers for my grandmother, and having to go through some of the toughest decisions that our family has faced. At the same time, hearing a lot of stories at the bedside in the hospital from family members sort of travelling parallel paths. So, I think it's a blessing. It's a lucky strike for me when both my personal values and interests align with my professional career. I took off in the direction of dementia care at that time, worked my graduate school time, focused on Alzheimer's disease and working with the Alzheimer's Association, building out programs for professionals, but also consultation with family members because it seemed like to me the same information that I had in my professional training. Family caregivers needed as well. And we needed to be able to just talk about this disease and the challenges that these families were facing to help kind of put some science and solutions into those family members toolbox. Pete Koch: That's a great story, and it is. Yeah, I talked to a lot of caregivers. My daughter is in nursing school and she started her actually her clinical rotation right now to get her associates, which is pretty awesome. But, you know, talking with her and my mother in law is a nurse and I have a sister in law who is a surgical tech. So, they all have something in their background that caused them to go further into nursing. It's not just the job. And I guess I hear that with you as well. Like this is not just a job. It has a lot of personal impact to you. Sounds like you found as well the things that you were learning through your schooling is so applicable to those people that you sit like that, don't have that education that have to care for someone in their you're able to bring that information to make it real to those lay caregivers who are out there caring for family members. Heather McKay: It's been a goal of mine. I mean, to be able to sort of translate what's happening in the research and the literature around dementia care for the countless family members who are providing the majority of care in the home. I don't know if every listener realizes, but the majority of care is provided unpaid by family and friends in the home. We might all automatically think about, you know, doctors' offices, medical practices, hospitals, long term care facilities as all members of that blended dementia care team. And it's true. But the majority of the load falls on the shoulders of unpaid caregivers without a whole lot of medical training or background knowledge about this disease. So, sure, it's been sort of a mission of mine. And I considered a privilege to talk to family members about what's happening and in their loved one. I've also noticed in the research is starting to back us up on this family Caregivers who know their loved one well can actually be better detectives than even a doctor or a most sensitive assessment tools, because a family member will notice when their loved one is somehow different because they know their regular routine. They see patterns of change in a person in early stages of dementia can come into our office and ace an assessment with a little bit of adrenaline pumping through that central nervous system. And for a short period of time, ace, those tests making early detection even harder. So, prepping these family members to really tell us what they've noticed to help in the conversations with professionals that report from an informant. What that means is the story from a caregiver who knows the person well is still one of the most important pieces of a comprehensive assessment. Pete Koch: Yeah, that's a fantastic point. And it's usually a relatively slow onset. And when there's memory changes, we all have memory issues like, I don't know, when was the last time you forgot your keys somewhere and couldn't find them? This morning was mine. Right? So, I don't know. Is that early stages of dementia? Ask my wife. Maybe she thinks so. But when we when we think about it, all those little memory changes for us as we get older. Sometimes you just take them for granted as no. Yeah. This is just the natural part of aging getting older. But when you understand more of the key points to look for and then are able to communicate those to a professional, you can have that early diagnosis and then treatment. Not so much. Well, maybe there is a treatment out there or will be soon that could be provided, but care can be changed. How you manage. Heather McKay: Exactly. Pete Koch: Conversations with those people because it's not just forgetting something, it's truly a progression of the disease. Heather McKay: It sure is. And I want to hold on to this idea. I want to give you a nice example of maybe the difference between just regular forgetfulness and a little red flag. Pete Koch: That would be fantastic Heather McKay: Maybe for a family member could actually pick up on. And then don't let me forget, because it sparked a couple of good ideas, I want to share about what's different types of memory loss that can actually be detected early on. But one of the things that we could all do is just tell our neighbor to spread this public awareness about the difference between regular forgetfulness and some problem that not normal aging. I like to tell it in a little scenario if I'm sitting in the living room and I'm watching TV. Commercial about coffee comes on and the way my little brain thinks. I start thinking coffee sounds good. You know, it's just it's just a suggestion. But I'll pop up out of the chair, headed to the kitchen with a particular memory file alive in my brain called working memory. Working memory holds five to eight things. OK, so you're following me. I've got five to eight things about coffee on the brain as I'm headed to the coffee pot. If the telephone rings and you're Peter are on the other line and I pick up to talk to you about recording our podcast and the time we want to start. And you know that the equipment issues and by the time I trade five to eight pieces of information with you, coffee gets picked out and working memory, that's how it works. You only get a small amount of information to hold at the front of your mind. Now, what happens in this transfer? We don't lose the coffee altogether. It comes out of working memory to be stored in short term memory so we can get our hands on it again. But you know where I'm going with this. I hang up the telephone. I'm standing in the kitchen thinking what. Pete Koch: What was I thinking about before. Heather McKay: Why did I come in here exactly. What is that thinking about? And so that retrieval to get coffee out of short-term memory and back up to the front of my mind is something that we all know is getting longer. The older we get. And just to put everybody at ease, we're probably all in the same boat here today because the retrieval to get the idea back from short term memory was the fastest when we were 25 years old. So, after twenty five, you're just noticing yourself standing in the kitchen like a knot on a log. But you'll go back to the living room and at some point, you'll get a reminder. Now, this is an important piece of normal brain functioning. It may be that you sit back down and see the commercial again. But when you get the reminder, you know what it feels like when it falls out of the sky, just hit you in the head and you think, oh, yeah, I got halfway to the coffee pot, that's all. Normal brain function. We forget things because they get kicked out of working memory stored in short term memory and we get reminders and that. Oh, yeah. When you just say, oh yeah, I forgot. It's been. Is the sign that your brain is working normally. So now let me just compare that in early stages of this disease, probably before the person is even diagnosed. He'll see the commercial about coffee. He thinks like I do. Coffee sounds good. You'll pop up from the chair, head to the kitchen. He's got five to eight pieces of information in his working memory, just like I did. He'll take the telephone call and early on, he'll sound as good as I did over the telephone. And when he hangs up coffee, he's been kicked out. So far, we're the same. But early on, there are some of the first darker cells. Remember the darker color, unreliable sick cells in short term memory. So, the coffee doesn't get filed. It's poof. It's like it's gone forever. He's standing in the kitchen. Can't remember why he came. So, he'll go back to the living room. And here's where you'd have to be looking. You'll see the commercial about coffee again and say, coffee sounds good. I think I'll go make a pot. He's headed to the kitchen like it's the first time and a key piece there. This could happen a hundred times with somebody that you loved. If you weren't paying attention to that, you could miss it 100 times. But the missing piece is that, oh yeah, because it wasn't filed in short term memory. He doesn't have that same like falling out of the sky and hitting him in the head experience that we've all fell missing. Oh yeah. Is a little red flag. Now people will say, Heather, why would you even want to speak to the doctor about this? If there's no known cure yet. The reason is there are 40 eleven things that look like dementia that aren't. And if you see it, if you see an early problem like this lack in short term memory, it's worth getting checked out because there are so many other things that could cause that that have relatively easy treatments. And so still, diagnosing dementia today is a matter of ruling other things out. There are vitamin deficiencies. There are you know changes in your hormone levels as you age. There are changes in neurotransmitters in your brain that can just be boosted again with relatively easy treatments to give that person full function and capability back. And that's the reason to check out early signs. Pete Koch: That's a great point. It's a really good point. And many times most of us wouldn't be able to associate that. That almost brand-new memory for that person. Like. Heather McKay: Exactly. Pete Koch: That. They're on repeat, but they don't remember. It's Groundhog Day for them, as you know, Bill Murray movie. Right. Heather McKay: And early on, that's pretty tricky to spot because there again, there's darker cells. They're unreliable, but they're not dead yet. You can't count them out. So, he might not make that mistake consistently. And that's where the gentleman in my consultation visit said this thing won't sit still for me. So many family members have said, Heather, I noticed a problem with mom. She made a mistake. And I had read that this sort of mistake was not normal for aging. It wasn't just regular forgetfulness. She said, I paid attention to mom for a while and I wasn't going to bring it up if it wasn't a real problem because I don't want to make a mountain out of a molehill, people say. But to me, she made this mistake once and then got it right 10 times. So, I kind of felt relieved because I figured it just wasn't really a problem. Must have been a one off. The doctor's visit came and went. I didn't bring it up because I hadn't noticed a pattern. And as soon as we left, that doctor's office had gone, too. She made that mistake again. So, we've mentioned several times this morning I read just about how understanding how the fluctuations happen even early on and continue through the progression of this disease. But fluctuations can make this tricky to spot early detection. We keep talking in this country about early detection, better outcomes, more effective treatments for the people with the disease and family caregivers. It's true. But I think early detection is still a challenge and it's not for lack of trying it on a lot of caregivers’ part. So. We're just get digging and a little bit deeper today about what we can notice and what's different from normal aging. I wanted to say a couple of things about memory that you might spot as this disease keeps going. Some family members are familiar with short term memory, but they're learning about something even faster than short term memory. It's called immediate recall. Not everybody's heard about this one. It's literally what just happened boom. What I just said boom that quick. But what they do notice is their loved one can ask them the same question. Back to back to back to back. That's like on constant repeat. As soon as she's answered for the hundredth time, he's fixing his mouth to ask it again. And caregivers will say, Heather, what is the deal with this? It's like if it's like you didn't hear me, but if I raise my voice, he'll say don't shout at me, you know, he doesn't have a hearing problem. But he will ask me on repeat. That's immediate recall. And it might be one of the first things that family caregivers notice if they missed that early subtle sign that was the missing. Oh, yeah, it's kind of hard to ignore the same question back to back to back to back. So immediate recall. Yes. Pete Koch: Is the immediate recall a later sign? So, the short-term memory. Not be able to recall a lot of short-term memory with a reminder. That would be a very early sign. And then the immediate recall challenge being later sign, but still early stages. Heather McKay: Exactly. That's the best way to put it. It may be just still in the early stage, but the first thing a family member or friend or neighbor noticed, because that other thing was so subtle, most people won't notice that he popped up from the living room, headed to the kitchen again for the first time. But it's hard to ignore the fact that he turned around and asked you the same question. Right on the heels of your answer, Pete Koch: Because they could they just could not remember that said that you had just asked that, or they had responded to it either. Heather McKay: Exactly. Exactly. Now something that'll happen, and family members will back me up on this after they've answered for a hundred times. You're getting a little tired. This is the normal. This is frustrating. And so, what they have seen is that as soon as they get a little bit tired and they've answered the same question he asks, when will my daughter be here? His wife is saying she'll be here at 3. She comes at same time every day. He said, what time will she be here? After a while, she'll be here at 3. He said, I'll be get ready if I knew when she'd be here. She said, Honey, she's coming at 3, and as soon as she switches to that 3 o'clock, he will fool around and say, I don't need that kind of attitude to you. And she's looking at me like Heather. How can I be in trouble for answering when I've answered him 100 hundred times already today? How is he upset at me now? You tell me this. I like to point again to a picture. We can see these pictures in our MEMIC series. But right on the outside of the memory center, there's a memory that spared while immediate recall and short-term memory maybe go in through the hole in the hippocampus, the memory center, a memory called emotional memory sticks. Pete Koch: Ahhh Heather McKay: And so. Oh, you see, I always like to ask caregivers, what's the difference between three o'clock and three o'clock? And they hear the feeling of the emotion and recognize that it lives on the tone and my body language and the pressure in my voice. All of these little sort of nonverbal or para verbal cues, not the information, not the 3 o'clock pace, but that tone of 3 o'clock. That's what hits on the emotional memory file. And you're busted on your tone when he still can remember the answer and just know and how that works. Allows caregivers to say, oh, I see when I'm most effective is when my tone is friendly and respectful right down the middle. Cool, calm and collected. And I'm getting in trouble when my tone slips to something that either feels pushy or condescending or in some other way tired or frustrated. I like to ask people, you know, check in with your emotional memory file. It feels like a little radar in my brain, but I'll say, can you tell when somebody is in a rush and they'll always say, yeah, I can tell. It's not about what they do, it's how someone does it. Can you tell when somebody is talking to you like they think you're stupid? Everybody can tell. And it's not by what folks say, it's how they say it. And that's a big shift for caregivers of all stripes, professionals and families when they can realize that communication starting very early in this disease is going to be less about the facts and more about a feeling. Based on the strengths and abilities of the bright, the areas of the brain that are spared this disease is not just about losses. We can tailor our care and our support if we understand the person's strengths. Pete Koch: Because what you're really trying to do as the caregiver, then you're really teaching you're trying to get the person to remember what you said in a way. And what I tied this to is there's adult learning theory that talks about that emotional learning. When you are able to tie an emotion to a new task or a new learning. You are much more effective at learning that task than if it's just wrote and there is nothing there. So, if there's some there's a crisis to it or there's a love to it or there's a deep emotion, emotional connection to it, you're more apt to remember what you did than. Heather McKay: Yes. Pete Koch: Than before. And that's what the caregivers trying to do, is to get them to learn what they said and the reaction of the patient. Being frustrated, they just they just heard that emotion really for the first time because they don't remember what was said before. Heather McKay: It's a big aha. Yeah, it's a big aha for a lot of caregivers when they're when they're seeing how their loved one or their client or their patient is actually receiving the communication. So, when we get down to this understanding what's going on and why the person with dementia is responding the way they do. Now, I like to add a little bit of give you a recommendation from the research. Pete Koch: Please. Heather McKay: So, something to hang your hat on. In addition to paying attention to that tone, which I've always said is probably 95 percent of the battle because it's not as much about information is about as it is about the feeling. There's one other strategy that caregivers will pick up. And start to use and that is this keeping the answer consistent to use the example of the of the gentleman's wife answering him again and again that his daughter would be here at 3:00. You might have noticed that every time she answered, she changed her words just slightly. The first time she'd say she'll be here at 3:00. The next time she'd say her usual time is 3:00 or I expect her. But after lunch around 3:00. So, every time she gives me information, she has pitched it in in a slightly different way, giving her new information with some for someone who has trouble with immediate recall. She's just like changed the pitch on it. Every single time I think about it, like learning to learning to hit the baseball. If I change the pitch, if I move it around, it makes it harder for my young batter to get a piece of it. But if I can catch it in exactly the same, make it consistent, show it to him in the same spot with the same words in her answer, he has a little better shot of getting a piece of it. Pete Koch: That's a fantastic piece of information. And another part of the toolbox that we're building here. Tone and then consistency of how you deliver the message or the words that. Heather McKay: Exactly. Exactly. Pete Koch: Let's do this. Let's take a quick break. We'll go to a quick commercial here and then we'll come back in just a couple of minutes and we'll dig a little bit deeper into the dementia care challenges and some strategies for understanding and helping those loved ones that we're going to be dealing with. Pete Koch: Welcome back. And today, we're talking with Dr. Heather McKay, Occupational Therapist and Dementia Care Specialist with the Partnerships for Health in Hillsboro, North Carolina. Again, Heather, thank you so much for joining us today in the podcast. Prior to the break, we talked a lot about how this disease affects the patients, the caregivers, their relationships. We actually framed a couple of tools that people could use to listen for how their tone is to help the patient learn what has been said and the consistency, in your words, as you try to frame answers to their questions. What I like to do now, though, Heather, is talk some more about what changes happen in the patient as the disease progresses and what happens and what we might be able to do to prepare or to help that particular patient. Heather McKay: I think it's another great strategy, Peter, to outline sort of a timeline of dementia, because what I've noticed is as the person's skills and abilities change, so too must our support as caregivers change and adapt to keep up with them. And one caregiver told me this was a CSA. I was talking to a nursing assistant. She said it so brilliantly. Just she said, when it comes to dementia care, what worked for you yesterday is not guaranteed to work for you today. Pete Koch: Oh, that is so true. Heather McKay: And it's so true. And what she was putting her finger on is that the person with dementia changes. And it's our challenge to let go of something that used to be effective when we noticed that it's not working anymore. In order to pick up on some new strategies. So the changes that we talked about in our first period, there were changes that could have been happening before the diagnosis was even made, changes that family members might have just adapted to, not knowing that it was anything, you know, to be concerned about. Sometimes family members adjust their routine and literally kind of coast through the earliest stage of dementia. It's not until some other changes happen that disrupt the person's everyday life and those routine activities that that really sort of raises the raises the bar on the challenge. One of those changes and it's something that not everybody's heard about but is a change in the memory center in an area for situational memory. And let me explain situational memory first. It's how we understand our situation because our brain put information together in order. So, for instance, I know why I'm speaking to you today, because it started with a you know, whenever we lined up our appointment and made a date to get together on the podcast. But however, it started A led to B and C led to D, and that's why I'm here. I understand and feel good about my situation knowing what to do, because all of that information hangs together in order as this disease progresses. Situational memory is a problem for the person with dementia. Lots of times it's one of the signs that that spurs a diagnosis. This might be when a person is just diagnosed with dementia, but a family member has noticed that daddy doesn't understand the situation. He's asking questions like, what are we doing here? What is the name of this place? What am I supposed to do now, right now? Is any of this here for me? Like, how am I going to get back home? Those are questions about the situation because he can't put it together in order, she also noticed that when she tries to line it up for her dad, she'd say, daddy, well, it started with A she'll tell him this A led to B led to C led to D that's how we got here. That's how we got here. She's an expert, noticer there, because she can bet, he's looking at her like she's got three heads. It doesn't hang together in order for him. So, a person with dementia in this moderate stage will literally say, you've got me mixed up with somebody else. That never happened or I wasn't a part of that. Or you made all those choices and decisions behind my back after she knows they've talked about it. She knows they've worked through forty eleven other options before they were faced with this tough decision. And yet still he will say, you just do all of this without me. That kind of change disrupts a person's whole daily routine, even a simple task like getting dressed, freshened up, ready for the day has an order to it. We take this for granted, but you got to the studio looking as good as day to day because you woke up and did A. And then you to B. And then you did C. And D all in the same order to get out the door, ready for your day. And what caregivers are noticing in this later stage, which may be the beginning of the diagnosis, but not the beginning of the disease, is mom's not doing her normal daily routine. So, she dropped out of things that she used to enjoy doing or she's not getting up, getting herself dressed, washed up, ready for the day the way she always did. They'll ask Mom. Do you want to help you take a bath? And she'll say, no. Why would I need any help for that? See on the emotional memory file, together with long ago memory, she may think she's. Always done that. And she did it just this morning the way she always did, but a daughter. A good detective said it's been two weeks since moms washed up, and every time I come over, she seems to be in the same clothes and I can tell their dirty. She's not able to get her medicines in the right order or take her or have her meals in the same routine that she once did. And now problems are starting to compound. And if she's not sitting down at the kitchen table eating three times a day the way she always would, just like clockwork. The daughter said, I'm afraid the medicines aren't going down the hatch because it was part of her routine to sit at that kitchen table and take the medicines every time she ate. She would literally drink out of the same cup. So, caregivers are noticing that the steps of the routine are not falling together in the order. They've just never heard of situational memory. It's just a really big road sign that happens in the moderate stage of this disease that causes a whole lot of problems. At the same time, Peter, it's not just in the memory center as this disease marches on, other parts of the brain are changing, including language in the temporal lobe or the side of your head just above your ear. And running along the side is the area where you understand language. So, let me dig into this for just a second. You understand language in different files, just like we keep memories organized in different files. And an area of that temporal lobe that goes first is an area for understanding formal language. That's the information words. It's inconvenient because formal language are all the instructions, the directions that she gives her mom, the explanations that she gives her mom with all the information to help keep her mom on track. Well, between the combination of situational memory loss and her mom's trouble, understanding formal language or all those instructions makes it really hard for the person in moderate stage dementia to just do what we tell them to do. Now, I ask folks all the time, and when they see that picture of the temporal lobe, and the area of the formal language that's hit hard. I said imagine if you needed to get your point across to somebody who spoke English as a second language. In other words, words are not going to be your best tool. In that kind of interaction, what else could you use to get your point across, and caregivers will say visual cues. And now we're starting to really build a caregiver's tool box when they're paying attention, not just to the tone and what they say and how they say it, but they're starting to add visual cues, but just simple things like give a gesture if you want her to stand up, wave your arm, if you want her to get started doing something. Bring the first step and put it in front of her. I mean, it's different than asking, mom, what do you want to eat? A visual cue is to bring her a couple of options that, you know, she likes and ask her to choose. She can see the choices in front of her rather than listing off all the things in the refrigerator that we have to drink instead, bring her a drink, something that you know she likes and show it to her. She's more likely to take that cue than the open-ended question. That was all informal language. So, we're starting to kind of stack some tools in the tool box for a better communication, understanding that it's not just about memory. This is a language disorder. Pete Koch: Wow. That's really that's very insightful. And I was thinking about this as you're talking about those visual cues. It even works for folks without dementia, as you think about. Well, given a choice at a restaurant, say, and if the menu was only text versus the waitress bringing you two dessert options in front of you, choose A or B, you're going to have an easier time choosing A or B than a list of 30 different options unless there's one on there that you know you like and then you might go to that. Heather McKay: Isn't that true? Oh, I can just imagine myself in a restaurant with my grandmother. OK. Now, she had she had started to progress. She'd already had the diagnosis. She needed a helper with her throughout the day and other family members. And I got to be pretty good helpers because we were intuiting something as she had trouble doing things, the steps of a task in order. We were kind of intuiting that, you know, like a good caddy helps a golfer through the course I being the caddy could set her up with things which she needed in the right order at the right time with a little bit of rhythm. Put something in front of her right when she needed it and take care of a lot of that situational memory challenge. She didn't have to put the steps together in order because I was a good caddy. Just one step ahead of her well in the restaurant that she loved to go to. I noticed that she found it easier to order for herself because the menu had pictures and it tickled me to death because she would often order the same thing. I mean, she was a creature of habit, just like I am. But she could make that communication with the waitress because she could hold the menu up point to her selection. And it and it really relieved a lot of the language challenge in that little interaction. Now, it wasn't just in hushes understanding language because you produce language in another area of the brain and that language production is going at the same time. So not only did she have trouble understanding a question or instructions, she had trouble spitting out her own information, but pointing to the picture on the menu, especially when I was cueing her up for every step of that task, helped her to be her best in that and actually order for herself in that new in that different sort of way. Pete Koch: Well, as the patient from the patient side of things is all of these effects are happening to them and they're trying to interact with the world as they know it now, but it's not what they knew before. I would imagine that it's very frustrating for them as well and that I can't help with the processing and the other challenges that are happening. I know when I get anxious about something or I get frustrated with something, I am not at my best for mental processing. So that's just going to probably take it down even further. Heather McKay: Let's all appreciate for a minute what happens in our frontal lobe or the area of your brain right behind your eyes. This is the front part of your brain that is responsible for your impulse control. So even when you're taxed, even when you're at the end of your rope or challenged to the max you're still working with a full frontal lobe to pull back on the reins, even on a frustrated or tough day, to pull back on the reins and say, Whoa! Don't lose it. Hold it together. Don't go off. Now, don't say that here. Don't do that. It would just make the situation worse. And those reins on the horse are like our saving grace. Even when stress is high, brain function goes down and we start pulling back on those reins. Well, this this disease, especially in the middle stage, is starting to really affect that frontal lobe where if you saw a picture of the darker brain with dementia, that front part would be receding back like a hairline. And so, what we've got is a perfect storm. So, let's stack up a situation here. The person is not understanding all of the information in their environment. They don't understand everything that they hear and can't hold on to the information that we're trying to give them. And they're not sure how to put the steps of the task together in order to do for themselves. At the same time, the reins on the horse are getting cut. It's a potentially dangerous situation that makes dementia caregiving different from other types of caregiving. When, despite our best effort, these interactions can be frustrating for both the person with dementia and their caregivers. And this disease spares a protective reflex called fight, flight, fright. Fight, flight, fright is that little startle button in our central nervous system that we all have and all it takes is a little startle. Just like that. Without all of the understanding of the situation and that impulse control, a person with dementia is quick to startle and quick to either one. I mean, they can fall in a startle situation. A person with dementia will fall like a box of rocks is so fast. You cannot even catch him standing right next to him. And that's because the reflex is fast just by the nature of a reflex. It's built into our central nervous system to protect us. They don't have the coordination to catch themselves after a little startle. So, falls are frequent and a high risk for people with dementia. But so is that fight reflex. The fight is when somebody will strike out to protect themselves when they're startled. And it's an easy mistake to make. If we're not constantly aware of sort of how this person is responding in the environment, you can come up beside somebody out of their peripheral vision before you even knew it and hit that little startle button. I don't want to ever have caregivers, myself included, on the receiving end of that fight, flight, fright reflex. Just to add a round out those three. Sometimes the person, when they're startled will actually kind of shut down. Maybe the environment is overwhelming. It's a little bit too much for them to process. And I'm asking caregivers to walk through busy spaces like the dining room of a full assisted living facility and notice how many people with dementia actually have their eyes closed. That's one way of sort of fleeing that situation in that flight reflex. Sometimes people go to sleep. Sometimes they'll just close their eyes and shut down and sort of check out. But all of those behavioral responses, caregivers can notice and connect with that fight flight fright reflex. So, I want to add something else to our toolbox. A strategy for a strategy for driving around that startle button. In other words, to get her interaction started on the right foot, to have any chance of our communication strategies, working to help someone with dementia, do something with us or have a have an easy social visit or to deal with their distress if they're upset. My best chance is to start my interaction on the right foot. Driving around that startle reflex is the beginning of everything else that follows. So, we call it steps of a positive physical approach, and it just means that I want to come from the front. I want a person with dementia to be able to see me before I'm in their personal space. It just makes sense. I sort of measure personal space informally, but it's whatever is within their arm's reach. Now, we might say, like in our culture, that's like your personal space bubble. But I'm also thinking from a safety perspective, because that's also the range that I the caregiver could be injured. So I want to check myself outside of the person's arm's reach and give myself a chance to get in front of them. Let them see me. I'm going to give them a visual cue to let them know that I'm coming in. And this is not rocket science. It's like, give them away, throw at your little hand and show them a handshake, visual cue. It actually triggers a motor memory, something that we haven't spoken about yet. But that's just the way you move your body on automatic pilot. And it's communicating a handshake that a person with dementia may understand as a motor memory, even if they don't understand an explanation for why you're there. So now shown a visual cue that literally just opens like a key in a door, opens up the space to their into their personal space. I can come closer and get connected with that visual cue more easily than a whole lot of words to round out that steps of a positive physical approach. I Want to get down on a person's level If a person seated I want to just get down, whether I'd take a knee or pull up a chair, any way that I can get on that person's level to make a connection with a little back and forth social chit chat, it spared longer than formal language and has an emotional feeling to it. You know what it's like when somebody gets connected before they get on to the business? In our culture, we just do that little back and forth social chit chat as a way to set the emotional tone before we ask a question or given instruction. Pete Koch: You're breaking the ice, right? That's what you're talking about. Yeah. Heather McKay: That's it. So now I'm into the person's personal space. Made a physical connection, given lots of visual cues on their level and connected on an emotional tone before I actually deliver my message. Putting that together and making it a habit. Building it in to the way you communicate means your interactions get started on the right foot. And not running into that automatic startle reflex that gets our interaction started on the wrong foot could be potentially dangerous for the person with dementia and the caregiver. Pete Koch: Sure, I can. I can certainly see that. I saw that with my interactions with my grandmother and my mother and the nurse who had come in, my grandmother, my mother would be interacting in some way. And then the nurse would come in. My grandmother would see her. The nurse would move to the other side of the bed behind her and then reach to fluff the pillow. And I hear that there was the startle. My grandmother would her arm would go out. And whether who doesn't matter who is there It was the fight reflex. Heather McKay: Yeah. Yeah. And so when you see and make these connections like you're doing between what's happening in the brain of the person with dementia, there observable behavioral responses, things that we can notice and then connecting or closing the loop with other strategies that are more effective, then we're starting to really put together that that evidence based dementia care for caregivers of all stripes. You mentioned the everyday interaction at the bedside in a hospital or a residential care facility. And I ask caregivers in those settings, look around the space, look around our environment here, where are the places that you interact most with people who have dementia? Caregivers will say, well, certainly in the bedrooms, you know, at the bedside, we help a lot of people get up and start their day. We help people in the bathroom. We help people in other common areas like our dining room or activity spaces. I said, OK, we've got the blueprint of these most of these areas that are rich with activities. Now let's look at our blueprint and see if the space is working for us or against us in in our use of the positive physical approach. Is there anything that we could do in that environment? Take my grandmother's bedside at her assisted living facility. If I want caregivers, visitors, staff, family to all use the steps of a positive physical approach, then I want to have places for them to land maybe on both sides of the bed. It just meant that we could change the furniture arrangement a little bit to make that that beginning part of every interaction a little bit easier for caregivers. I mean, I know I'm comfortable going down to one knee or squatting, but not for long. And I always tease folks that they don't go down if you can't get back up. But look around and look for the furniture arrangement. That's going to make it easier for you to come in with a positive is a physical approach and get on that person's level before you start to do something. Pete Koch: Yeah, that's a fantastic point, because we many times take for granted that the space that either is in our home, if we're caring for a loved one in our home, which we've lived in forever, is appropriate because it's always been good this way or what has been provided to us by the hospital or by the long term care facility. As a nurse coming in, that's the best way to do it either for a new dementia patient, maybe it's not. Maybe there's ways that we can make the positive physical approach more habit forming by taking some of the questions out of it. Like it's like you said, this is where you land. This is where you stand. This is where you go. That's how you can get to their level. These are fantastic points. Heather, fantastic. Heather McKay: It reminds me of a caregiver that I met. She's caring for her husband and in their own home, you know, place that they've lived for 50 years and the arrangement of the living room was just such that she would come in from the kitchen always to the back of his recliner because the recliners facing a television that's at the other end of the room. And this was just the flow of traffic always coming in from behind. Her husband, who has dementia, and she just recognized a pattern that her husband could tell her no to any idea she had. Honey, do you want to come up and, you know, have breakfast? Honey, do you want to come back here with me to the bedroom and make the bed, honey? Do you want. Are you ready to go out? We've got an appointment. Every single thing she could come up with. He could say no to any idea she had. Well, she looked at the arrangement of the living room with me, and we just pulled a little stool around to kind of the front kitty-corner of his of his recliner. And it is serve two purposes. It was a cue for her to circle wide outside of his personal space and actually come around from the front now. And because she had her little stool, her little ottoman, I mean, it was just a comfortable little pad for her to land on. And she started making that the habit to connect with him with a little social chit chat before asking him to do something. And by golly, she started charting her successes. And I mean, the curve just skyrocketed. She could get him to engage in doing something with her more often when she used the steps of a positive physical approach. Pete Koch: Wow, that's great. And I'm as you're again saying that I'm thinking about my own parents who are getting on in age and I can see my dad's recliner and the way my mom approaches him because of the configuration of the house is directly from the side. She would come in from the dining room to the living room area where it is, and it's from the side and it's right into it. You have to cross right into his personal space in order to step in in front of him. Whereas if you change it around a little bit and had you approach from the front, from the other side of the room, it would set up a totally different tone and a different way to approach fascinating. I would never have thought of that. Heather McKay: Caregivers are getting so flexible and proficient at a positive physical approach. When I see that they can modify their action based on how the situation is laid out. So for instance, it's not exactly like CPR where you have to do it the same way every time. I just use CPR as an example because it's a protocol kind of thing that you that you demonstrate CPR the same way every single time. This is different. We want to be able to help a caregiver like a family member or a professional caregiver modify their approach to fit a house, different situations without losing that original intent, which was I just want to drive around his startle reflex. I want to get this interaction started by scaring the pants off of them. So one of one of my role models for positive physical approach was a nurse who was charged with the med pass. And a lot of caregivers out there will understand what I mean. But she would carry a cart around with all of her residence medicines and she would one by one greet and give each resident's medicine. This is an activity that took, you know, a good little bit of her time every morning. She noticed that many residents with dementia would refuse the offer. And no matter how she pitched it and she just had she had the friendliest way about her. But she was running into that automatic. No. Again and again, we took a look at her space and her routine for the med pass and said, what if we overlaid a positive physical approach on your med pass? It would mean that you're generally thinking about folks personal space outside of arm's reach. You're generally giving them more visual cues to let them see you before you're in their personal space and you're offering more visual cues with less formal and straight formal language and instructions for what to do. She was actually able to fit a positive physical approach in forty eleven different situations because now she would do this three times a day with cart and we actually tracked the number of refusals that residents would decline their medicines and those refusals were going down. In other words, people were participating in that. Really important part of their self-care and personal care, which was taking their medicines every day with just some different communication strategies, namely a positive physical approach. Pete Koch: It's fantastic. That's fantastic. We talked about a lot of different things today. We've covered a lot of ground with dementia. I'm wondering if you could just spend a minute or two here towards the end and summarize for us some of those key points that you'd like our listeners to take back with them, whether they're a caregiver professionally or whether they're personally caring for a caregiver or at home. Heather McKay: Well, I think some of the most important take-home messages are caregivers of all stripes. Professionals and families need the same information. We need to be working with the same knowledge. And so strategies for just talking about this in layman's terms and what I call plain English can be helpful for both pros and husbands and wives, sons and daughters, grandkids like you and me. In addition to that, some strategies to help us talk about it and share our knowledge between all of these communities that we cross. Pictures can be helpful stories that exemplify changes that happen in the brain. Starting early on in areas of the memory center, understanding language, but also producing it and impulse control can help us sort of get a better handle on why people with dementia do what they do so we can tailor our support and then thinking more about the timeline as people change. Today we talked mostly about early stages into moderate stage, but also just sharing resources for connecting families with information about late stages of this disease or the end so that we can prepare letting go of things that used to work when we noticed that what worked for us yesterday is not working today, picking up on some new strategies that that tend to keep up with our loved ones as they change. The steps of a positive physical approach is something that beginning early on in this disease can help our interactions with people whose communication is changing and it can really help us drive around potentially dangerous situations in which people with dementia could get hurt and their caregivers are at risk. Pete Koch: Those are great points again, and you'd mentioned that we only tied or touched on the early to middle stages of dementia and we haven't really looked at the end stages of dementia, which I think I'm going to ask you to come back to talk about some more, because that's just as important as recognizing the beginning stages and managing your loved ones or the people you care for in the middle stages, because it's going to come to an end that is the inevitable end to this disease. We have to have some knowledge about that, too. Heather McKay: I appreciate that invitation as a good hospice worker. I love to share information about end of life support. What to expect at the end stage of this disease. It makes sense for us to really focus today in the early and moderate stages because most people living with dementia will encounter some of the problems that we talked about today. Not everybody will live to the very end of this disease. Like my granddaddy would say, something else will take them on to their reward. You know, I mean, dementia. Dementia is a condition of older age and people with other health conditions can pass away from other things. But people like your grandmother and mine went the whole race. And so I would really welcome an opportunity to talk more specifically, given the time and the stories that it deserves in the area of end of life care. Pete Koch: Well, great. Then we'll touch base after this and we'll try to set up a day for you to come back with us. It's been fantastic to talk to you today. Geez. Excellent. There's a lot of stuff. We covered a lot of ground, lot of good tools out there. You can find out more information about dementia at Dr. McKay's Web site, www.PFHNC.com. And are there other resources out there, Heather? We have we talked about the MEMIC the MEMIC webinar series that we can find at the MEMIC Web site. And then your Web site, which I just reference, other resources that our listeners might be able to find more information about dementia. Heather McKay: Thank you. I'd love to give a plug for the video series that the State Veterans Homes helped to produce Dementia Care for America's Heroes. If the stories and the information and the pictures that folks learn about in our MEMIC series just really wet the appetite, there are more resources and demonstrations as well as more detailed explanations of the timeline of dementia in the Dementia Care for America's Heroes series. Folks can find that on my Website. One of the most common requested topics for staff training and in facilities is around the issues of communication and dealing with distress or managing challenging behaviors. Both the MEMIC series and the Veteran series are terrific tools for that kind of on the job education as well as a particular film in the Veteran series all about the timeline of dementia. So we've got tools that make it easy for facilities to train staff on all shifts, whether it's watching a film at 3 o'clock in the morning when you've got a break on third shift or share in those same films with family members when they come through your doors. I appreciate those facilities being community education centers as well. So I just thank you. I appreciate the opportunity to talk with you, Peter. Pete Koch: Oh, that's fantastic. Thanks. Thanks for those two. And you're available as a resource as well to come and do some onsite training is through the company that you work for there, is that correct? Heather McKay: That's true. It's one of my favorite parts of my job is to meet blended teams of caregivers in their workplace to sort of unpack the challenges that they're facing in my research. It's been fun for me to discover all of the positive outcomes that happen when we get a blended team together around what I call a learning circle and analyze one of your most challenging cases together. I'll put my head together with yours and we'll come up with a plan together and means of tracking progress to help teams master some of the most challenging situations in dementia care. I love to do that at your place with your team. Pete Koch: That's for. That's really cool. So how do they get a hold of you to book that if they're interested in doing that? Heather McKay: Reaching me through the Web site is probably the easiest way. My email address is [email protected] but you can always find me at PFHNC.com Web site. If all else fails and it's hard to remember those Things you can Google Heather and dementia and it'll get you there. Pete Koch: Perfect. Thank you very much for that. So, with this with the podcast. You can check out the show notes for the podcast, which will have the references and the links that we discussed today. Our listeners can find that at MEMIC.com/podcast. And they'll be a bunch of other resources that you can check out when we're finished. Well, thank you again, Heather. I appreciate your time today. And that brings us to wrapping up another edition of MEMIC's. Safety Experts podcast. Check out our Web site www.MEMIC.com/podcast where you can find our podcast archive. And while you're there, you should sign up for our Safety Net Blog so you never miss another article on safety news or safety news updates. And if you haven't done so already, I'd really appreciate if you took a couple of minutes and reviewed us on Stitcher, i-Tunes, or whichever podcast service that you'll find us on. And if you've already done that, thanks a lot because it really helps us out. Please consider sharing this show with a business associate friend or a family member who you think will get something out of it. And as always, thank you for your continued support. And until next time, this is Peter Kotch reminding you that listening to the MEMIC Safety Experts podcast is good, but acting on what you heard is even better. Resources/People/Articles Mentioned in Podcast   World Health Organization (WHO) - https://www.who.int/ Partnerships for Health - https://www.pfhnc.com/ National Association of State Veterans Homes - https://www.nasvh.org/index.cfm Armed Forces Veterans Home Foundation - https://www.veteransaidbenefit.org/state_veterans_nursing_homes.htm AMVETS Service Foundation - https://amvetsnsf.org/ The Air Force Sergeants’ Foundation - https://www.hqafsa.org/ Dementia Care for America’s Heroes - https://www.pfhnc.com/dementia-care-dvds/ Long Island State Veterans Home - https://veteranshome.stonybrookmedicine.edu/ National Caregiver Friendly Award - https://caregiver.com/2019-award-winners/ Alzheimer’s Foundation of America - https://alzfdn.org/ The ABCs of Dementia: A Caregiver’s Guide - https://www.memic.com/workplace-safety/safety-net-blog/2016/march/the-abcs-of-dementia--a-caregivers-guide Alzheimer’s Association - https://www.alz.org/ Groundhog Day movie - https://www.imdb.com/title/tt0107048/ Heather McKay’s email - [email protected] MEMIC’s Safety Net Blog - https://www.memic.com/workplace-safety/safety-net-blog