Preparing for End of Life Dementia Care w/ Dr. Heather McKay

Dementia is a disease that can strip away the very essence of who a friend or loved one once was. It ravages the mind, while, in many cases, leaving the body alone until late in the disease timeline.  Understanding the signs that accompany the disease, especially those in the later stages, will help improve quality of life, end of life choices, and the relationships of the people it affects. On this Episode of the MEMIC Safety Experts Podcast, I talk with Dr. Heather McKay, manager of Partnerships for Health in Hillsborough, North Carolina.  Together, we delve into the late stages of Dementia and how caregivers and loved ones can make sense of the disease’s effects and be better prepared for end of life choices.   Peter Koch: Hello, listeners, and welcome to the MEMIC Safety Experts podcast. Dementia is a disease that can strip away the very essence of who your friend or loved one once was. It ravages the mind, while in many cases leaving the body alone until late in the disease timeline. It's challenging, frustrating, maddening and heartbreaking for the patient as well as the loved ones and caregivers that surround them. While we may know much about the effects of dementia and have developed strategies for treatment as of this episode, there is still no cure. However, understanding the cues and signs that accompany the different stages of the disease can help improve quality of life and the relationships of the people that the disease affects. So I'm your host, Peter Kotch. And back with us today to help us make some sense of the effects of late stage dementia. And someone who is both passionate and compassionate about the disease is Dr. Heather [00:01:00] McKay, manager of Partnerships for Health in Hillsborough, North Carolina. Dr. McKay 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 very useful in developing a more effective dementia care workforce. She's the creator of the caregiver training video series Dementia Care for America's Heroes, featuring caregivers in the Long Island State Veterans Home and has collaborated with MEMIC to produce a webinar series called The ABC is of Dementia A Caregivers Guide. In an earlier episode, Heather walked us through the early stages of dementia and had some great insight and advice for caregivers and loved ones. We ended that podcast by describing some of the steps to the positive physical [00:02:00] approach, which is a method of engaging a person in the early stages of the disease. In today's episode, we're going to delve into the late stages of dementia and how caregivers and loved ones can make sense of the disease's effect and be better prepared for end of life choices. So, Heather, welcome back to the podcast. Dr. Heather McKay: Thank you. It's a treat to be with you again. And I'd like to take a moment at the beginning to thank MEMIC for the partnership that we've had in its impact in reaching so many different kinds of caregivers. Concerns for people living with dementia be their family members, friends, neighbors and professionals of all stripes. So while we talked today, sometimes I'll be talking to you from the perspective of an occupational therapist, and sometimes I'll take that therapist hat off and talk to you like a granddaughter. For those of you who caught our first episode, you'll remember that both Peter [00:03:00] and I are family caregivers to a beloved grandmother in both of our cases. My grandmother has passed away now, but she is still teaching me especially about the later stages of this disease, because unlike some folks, my grandmother went the whole race. She passed away from dementia, not from something else. So our intentions today will be similar to our first episode. A conversation with which last time, because we started putting some science behind what folks know about changes in the brain and different parts of the brain that explain why people with dementia do what they do in a different stages, as well as adding to the toolbox of strategies that work to support people as they change in this progressive disease. So I appreciate [00:04:00] the invitation to continue the conversation like you, when you're talking about something that you love and something that has been so meaningful in your life professionally and personally. Boy, the conversation can just keep going. Peter Koch: Yeah, it sure can. It sure can. And it's a really good point. We had started that conversation last time about really relating some experiences that we both had. And like you, I don't work in the field of dementia. But as I look at friends and family and connect the different resources that are out there and especially the webinar series that MEMIC and put out, when I can connect some of the information, the science that comes in, I can recognize that both in my grandmother when she was alive and then also some friends and other family members that might be in the early stages. I had another friend whose father passed from it probably five years ago now. And it sort of struck me as I was preparing for this episode with you, Heather, as I was thinking back through different friends [00:05:00] and family members and thinking about my friend's experience with her dad and what she had to go through, because I knew the dad as well. I could see him decline. And we had skied together for quite a few years. And then what we initially thought were some physical problems happening with him that changed his ability to maintain balance and to remember things. They really turned out to be dementia, which was something that hadn't been diagnosed early and got diagnosed pretty late in the disease when some of those signs of the late stages of the disease were very prevalent and they seemed to have been hidden by some not really a false diagnosis, but a misunderstanding of what was going on and some denial on the part of the friend and the family members that this is not really happening. It's something that we can fix with a back surgery or something else from a physical side. And it's not going to progress to what it did. So [00:06:00] I think this is going to be really good for us to talk about the late stages or really talk about the effects of early stages and give some tools and tips as people prepare for the end of life care for their loved ones who are in those late stages of dementia. But I think, I think, though, we need to put it into perspective by summarizing some of those early stages, because without knowing what the early stages are, you may not recognize the early signs of those late stages. So could you summarize that for us a little bit? Talk about those early stages of dementia before we move into the late stages. Dr. Heather McKay: I agree, Peter. Absolutely. Let's situate ourselves on the timeline of dementia. Some of the earlier stages may have appeared in changes in the person's memory. In our last episode, we talked about specific types of memory because while short term memory is probably the most well understood or common symptom that folks will recognize [00:07:00] short term memory loss. Maybe when a person has trouble remembering what they had for breakfast or thinking through what happened earlier today or yesterday, some of those changes will be hallmark signs of the number one most common type of dementia, Alzheimer's disease. But there are other memory changes that happen early on, specifically in the person's ability to recall what just happened. It's even faster than short term memory changes in immediate recall. So family members may detect or spot an early change when they're answering the same question back to back to back to back. That's hard to miss. I mean, when you've answered the same question 47 times, it's not even breakfast. People will say that was a clear road sign and it happened in the beginning. Other changes [00:08:00] that happened fairly early on are changes in a memory file called situational memory. So in the early stage and continuing through the moderate stage, a person having trouble understanding a situation. And you'll remember this is how it worked. Situational memory holds information together in an order. So, you know, while you're sitting there in the studio this morning. Because it started with a and a led to b led to c led to d. And that's how you got here. Well, an early sign that families or professional caregivers can pick up on is when a person asks the question, how did I get here? What is the name of this place? What am I supposed to do right now? How do we get home? All of those are questions because the person's having trouble putting the situation together in order. Situational memory will affect not just their understanding of where they are and what's happening [00:09:00] in that place. It also shows up in problems with the daily routine. So take, for instance, a routine of getting up, getting yourself ready and out the door in the morning. That routine has an order. First you do A, then you do B, then you do c without situational memory. Family members and professionals are noticing that a person in early and moderate stages is having trouble doing steps of the task in the right order. They're skipping steps or they're repeating the same step over and over again, or they're getting steps in the wrong order. And that causes a problem. I'm thinking of a situation that I remember from my home health practice years ago. But this client stands out in my mind because she clearly was in the moderate stage of dementia in that she didn't she didn't look [00:10:00] exactly like herself. And here's what I mean. When I greeted her at the door where she was living in her own home. She had on two sweaters. A dress a pair of pants and a big, big red scarf tied in a bow right under her chin. I know that's not how the woman dressed throughout her life. But in getting the steps of dressing in the wrong order, she had just piled on a few things that she saw laying around bedroom. Now, that particular visit doesn't stand out necessarily for how the woman was dressed, but it stood out because when I got to the door, I smelled some smoke coming from her kitchen. She invited me in with some small talk, some chitchat that sounded perfectly normal as we were swapping howdies and walking back toward the kitchen and noticed that smoke is pouring out of her oven here. By the [00:11:00] time we got the fire alarm turned off and investigated what she was up to that morning, I could tell that she was trying to fix herself breakfast, but she'd gotten the steps of that task in the wrong order. So picture this. She's got a cookie sheet, or a sheet pan with toast on it. But instead of putting the bread by itself under the burner, she had the plastic bag laid out on the cookie sheet. She had the toast sitting on top of the plastic bag and the jelly already on the toast. When she put that in the oven under the burner, she made a nice little molten lava of sugar and plastic. That was basically a smoke machine. Peter Koch: Oh, my gosh. Dr. Heather McKay: She didn't recognize the mistake was in the order of things. Peter Koch: Yeah right all the components were there making the bread Dr. Heather McKay: Yeah. All the components were there. And she had the good idea [00:12:00] of, hey, I'm you know, I'm up. I'm ready in the morning. Time to make breakfast. So she had the mission. She had the good idea to make herself something to eat. But in that middle stage, the devil's in the details when situational memory starts to fade. It's the order of things that get folks in trouble. So through that moderate stage, combining changes and different parts of memory, along with us, together with, changes in language, both comprehending understanding language, but also producing it for her. Spitting it out makes giving folks instructions particularly challenging. In that middle stage, caregivers are upping their coverage. In other words, family members are getting closer to and spending more time with their loved ones. Additionally, adding paid caregivers. [00:13:00] So that that person can continue to data things that they want and need to do. But with a helper in that stage, the helper gives a combination of visual cues and short of verbal cues, along with sort of a step by step rhythm for what to do and in the right order to take care or smooth out some of the risks in moderate stage. So we ended our last episode with some of the tools and communication strategies that make living together and doing things and staying socially connected a little bit easier through that middle stage, a positive physical approach, that combination of cues, they're going to continue to be helpful to caregivers and people living with the disease long into the late stage. So when you recap that positive physical approach, it means that the beginning [00:14:00] of our interaction is worth thinking about to get every interaction started on the right foot in the right direction. We want to drive around an automatic protective reflex that spared through the middle and late stages of the disease. And that reflex is a fight flight fright reflex, you can think of it, that reflex as the startle button in your central nervous system. If someone approaches you from behind or from the side, thankfully we're all built with that protective startle button. It just means that if somebody hits that startle button, you turn, look, find where you find where the threat of the risk is. And you can override that reflex with a full brain. But in the middle and late stages of this disease, avoiding that startle button is all the more important as people with dementia are losing area in the [00:15:00] front part of their brain. That impulse control judgment and that the reins on the horse that we pull back on to say, whoa, don't do that. Somebody could get hurt if we hit that startle button in the middle and late stages of the disease. A person with dementia is at higher risk of getting hurt. And caregivers face potential dangers, too. Sure. Starting on the right foot means coming from the front. Let the pivot. Let the person see you before you're in their personal space. Give them a visual cue. Something that takes no explanation. Put your hand up to wave to not only help the person see you, but when you give a visual cue like a wave and show your hand in a handshake position. It just says I'm coming into your personal space not to do anything weird in our culture. We get connected hand to hand before we really touch anywhere else on our bodies. Peter Koch: Very [00:16:00] true, So coming from the front, given a high visual cue to get the person's attention and offering your hand can surely be one of the best tools and the caregivers toolbox to get every interaction started on the right foot driving around that protective fight flight fright reflex. Peter Koch: Now, that's great, because if you don't if you push that, if you push that button and the part of your brain that's supposed to allow you to process the startle, understand that it's not a threat, that you're just surprised and then interact, that if that's not there, then the chance of that person striking out physically or running and getting themselves hurt is much higher. So, yeah, that's a really, again, a really great point. And I think what you're connecting here to is that needs to continue for the middle stages through the late stages as well. Dr. Heather McKay: You got it. So we're building a toolbox of strategies, many of which [00:17:00] can last and serve caregivers. And the people they're supporting all the way through to the end of this disease in a positive physical approach is one of the most important tools in my toolbox. And additionally, we've got some communication strategies that serve us in the early stages, but become even more vital as the disease progresses. That combination of visual cues showing people what you're saying or what you're talking about, what you want them to do can help them get started to do things with you as the language center continues to change in the moderate to late stages of the disease. What will happen as a person moves from the middle stage to the late stage when caregivers will say, Heather, we had some really good strategies that were working with a modified a lot of our activities around the house to do things together. We were working the buddy system. Some people will say, other [00:18:00] folks will call it the caddy work. I love the caddy analogy because in the game of golf, you know, there's two people. You've got the golfer and the caddy. The caddy is a really, really important part of that game because the caddy knows the lay of the land. The caddy has the bag packed and the caddy can put using visual cues, every tool or every item right in front of the golfer with a little bit of rhythm. Staying one step ahead of them the golfer  never has to think about or ask for the next tool or item. It's right in front of them right when they need it in the middle stages of the disease. A person can take the shot just like Tiger Woods rolls on, motor memories, motor memories or something that is still strong for the person in early to moderate stages. But at the end of that middle stage, motor memories start to fade. The caddy, who had a terrific [00:19:00] setup and flowed through the steps of making a simple meal together with their loved one, will say Recently, Heather, I've noticed when I hand my dad something, he doesn't know what to do with it. That's a road sign along the progression of this disease that motor memories are starting to fade. Let me say just for a moment. Let me back up and explain how motor memories work in your brain. We can all appreciate how our brains work when we know what happens just automatically. So motor memories are the way your body moves on automatic pilot. I'm not talking about high level coordination here. It's not walking a tightrope. But a motor memory would be how you put one foot in front of the other to just move your body over to the sink in the kitchen, going in a direction toward your chair or moving your body in all the right places to get up from the bed.  [00:20:00]Those are things that you don't have to think about. Sitting in a chair is not something that needs concentration. When you have motor memories, it just happens. If you say it's like riding the bike, that's a motor memory. If you say it's automatic pilot, you're talking about motor memories. When motor memories change, you may notice that a person stands up and can't figure out how to start moving. They literally can't figure out from their brain to their body how to pick up one foot and put it in front of the other. You might notice in another situation that a person moves toward the chair but doesn't turn at the right time. We took this for granted when it was a motor memory that you have to turn around just the right time, just enough to get yourself squared in front of the chair. Instead, the person in the late stages of dementia will approach the [00:21:00] chair. And instead of turning nose to nose right up with the chair and head in head first. And the caregiver said, hang on a minute. That's not how you get in the chair. Another break down in motor memory that the caregiver may notice headed toward the chair. The person started to turn. But too soon. Now they're turning in the middle of the room and there's still five feet from the chair. They talk about making your heart go pitter patter. These caregivers are sweeping chairs underneath the folks and late stages of dementia just to just to save them from that spill. Peter Koch: It's an interesting connection there, if you don't mind. I'm just thinking, as you're talking about my friend and her dad that passed from dementia, we were having a conversation a number of years ago and this just came to mind. She was telling me about an experience that was really frustrating to her and then kind of scary because up until this point, everything [00:22:00] had been going pretty well. They were starting to manage the memory issues. They were starting to manage the startle issues. They were starting to manage a lot of things. And they had gotten to a point where it seemed to be fairly stable. And then one morning, she had handed her dad a piece of toast that she had already buttered and put the jelly on at breakfast. And so it's it was a normal routine. They would get up in the morning. They would come downstairs, they would sit at the table. My friend would make her dad breakfast. Dad would eat breakfast. They would go on their day. And nothing had changed for weeks. And all of a sudden, he was handed the plate with the toast on it and just held it for probably two minutes and she's waiting for him to finish the process of putting that plate down and begin to eat the toast like he's done all. It struck her that I don't know what to do. Like, what do I do? And then she helped him out. And he was able to make [00:23:00] the connection again. But that seemed to me like that was the that was the sign that this disease is now starting to progress farther than it was before. I didn't recognize that until I was, until I'm listening to you right now talking about how the mobility memory, the motor memory changes. Dr. Heather McKay: It's a perfect example. And it reminds me of a time when my grandmother and I had gotten a pretty good routine of doing things together because I tried to be a good caddie and we'd gotten used to our rhythm and working together and with my support like your friend. In a step by step setup, she could still do a lot for herself. And I remember the morning that we were in the bathroom and I was helping her with her morning routine, and I knew exactly what she liked to do. She'd get a full face and makeup on. And as I handed her [00:24:00] the toothbrush loaded with the toothpaste, all ready to go. I turned my back to reach for the lipstick because I knew that's coming next. By the time I turned back around, she had the toothbrush with that blue toothpaste right through her hair. The motor memory from taking the toothbrush and putting it in her mouth and brushing. Didn't it click? It was the first sign. That's why it stood out in my mind. It was just the first sign that this is different. And in your example, you make a really good point that so many caregivers have said to me it's like Heather, as soon as you get used to the new normal, just as soon as you get your routines and all your strategies flowing together like clockwork. And we're having a good day as something changes. What they notice about that constant sort of need to adapt, the constant need to [00:25:00] recognize, notice and change ourselves is summed up in one caregiver's words of wisdom. Who said, Heather, when it comes to dementia care, what worked for you yesterday is not guaranteed to work for you today. And I thought, no, no better words have ever been spoken because it just captures the ever changing nature of the disease in the person living with it, but also the need to adapt. In all of their caregivers. Peter Koch: Yeah, that's a really good point. Really good point. And can be a little daunting, I think, for the caregiver or the loved ones, because we're all creatures of habit. We like consistency in our lives, in different things. So knowing that as this disease progresses, that the normal that was yesterday might not be the normal for today can be a little challenging. But again, I think that the hope that you're giving here is you can recognize [00:26:00] some of the cues to help you in the planned parts so you can be prepared and have a strategy for if this happens. I can move more comfortably into the new normal. Dr. Heather McKay: Exactly. And with changes in motor memories as one of the big road signs leading us into late stages of dementia and dementia caregiving, it just signals to us that now that perfect set up with just the combination of visual cues and short verbal cues isn't quite enough anymore. And it means that in late stages, the care becomes more hands on. And that's new. That's different. It's not the way it was in early stages of the disease when a routine was all you needed. And the mid stages of the disease when a good caddy was worth their weight in gold. Now, the setup of just handing her something isn't quite enough. She needs maybe a little physical help to [00:27:00] start the beginning of that task or to drive around the hard parts of it so that she can still do the parts that are easier in late stages of this disease. Caregivers who are getting used to. It takes a little time to, you know, build the coordination and that rhythm and timing up to help somebody physically with Hands-On care. But as caregivers are getting better at that and driving around some of the pitfalls that they foresee. Taken over some of the harder parts of the task to leave, the easier parts for the person. What they'll say is there were better days. On the other side of that change, too, I noticed that when I helped her to get started just by putting the toothbrush in her mouth, why she could finish brushing on her own. A caregiver said, If I helped Dad to make the turn at the right time, then he can still s [00:28:00]t safely. And we avoid a lot of falls because I'm helping him with the turning part. Turning harder than going straight. Lots of caregivers will say if I help my loved ones start putting on the clothes in the mornings, they position the pants in the right direction based in the right direction. Put them right down there where it's easy to step in and he can step in and pull them up on his own. So the hands on care is still really sort of are doing together proposition. Because caregivers have noticed when I try to take over and do that task to him, it rubs him wrong. And he seems to be more resistant if I try to take over the whole activity instead of giving it up to him in the parts that he can still do. Peter Koch: That's a great point , because there there's still parts of that person that are still there. There in the parts of his memory of the personalities [00:29:00] still there, the determination that the person had before the disease came in. The independence that the person had before the disease started getting worse is still there. So if you try to do everything for them when they still have the ability to do something for themselves, of course, it's going to rub them the wrong way. So there seems to be a very delicate balancing act between how much you can do or will do for the person you're caring for and what they can do themselves. Dr. Heather McKay: Bingo. And by the time this disease has rolled on and entering the later stages, a caregiver may have five, eight, ten years of practice with this person living with dementia. This is the late stage doesn't pop up overnight. We get into it through the progressive nature of dementia over the course of years. And so caregivers notice that even in this late stage, [00:30:00] a principle or a rule of thumb still holds true. And that is the person still has abilities, even with profound losses, a focus on what the person can still do and facilitating them. Doing that part can actually make activities, the whole daily routine run easier for both people involved. So focusing on areas of the brain that are preserved long into the late stage of dementia means we're thinking about emotional memories, not just what happens, but how it happens and how it feels to the person. Emotional memory is one of the skills or abilities preserved the longest in this disease. It means that people in late stage dementia will still pick up on the tone of your voice. Even if they don't recognize all the words they'll hear the feeling that carries that travels through the tone of what [00:31:00] you say they'll pick up on your body language. So they'll get a sense that something is going a little too slow or a little too fast or just the right pace. They'll hear pressure in what you say and how you say it. So thinking about the tone of your voice, how fast or slow you're going, and the emotional vibe that you're creating when you let somebody do the parts of the task that they can still do. Lending a sense of control and respect and autonomy even into the late stage is a really critical idea. Peter Koch: Yeah, no, that's really good. I just thought of this, too. Is there? I'm thinking of the brain as like another muscle that we have. And if they're allowed if the dementia patient is allowed to exercise those parts that are still functioning or even if they're not firing correctly all the time, when they can align them, do that, will it help [00:32:00] preserve? Certainly not for the entire time that the disease progresses. But will it help with the disease? Gosh, I'm not sure how to say this will help them feel better, I guess not just emotionally, but retain some of their abilities for longer than if you were just to take over and do everything for them. Dr. Heather McKay: You got it. You got right to the heart of the matter, which is it's still use it or lose it proposition. As long as there are areas of the brain that are still working, then helping in facilitating the person to use those areas, to use those preserved abilities, can actually help them maintain skills that would get this otherwise be lost sooner. So it doesn't reverse the course of the disease. It doesn't even negate the fact that it's a progressive disease and losses are a part of that progression. But by helping the person [00:33:00] maximize what they have in every stage of this disease, to me, I call it maxing out every level, helping a person max out every level we think of as helping them be their best at every stage. So caregivers who get attuned to that in early and middle stages carry that through all the way to the end in helping the person use what they still have. Let me tell you about one other part of the brain, as you called it, a muscle that we can help people in late stages of the disease to still use at the capacity that they still have. It's an area of the brain, actually, that involves a whole sort of synergy of a brain activity in the front, the back, the side. And both of the sides is sensory processing. Sensory processing is everything that comes in from the environment through [00:34:00] those pathways in your central nervous system that connect to your eyes. What we see to your ears, what you hear connect to your skin in which you feel your nose, which is smell. Some of those senses may be their best strengths in the late stages of the disease. So caregivers are thinking creatively about activities and ways of doing things that please the person's senses and let them sort of get rich sensory experiences by combining senses. Now, quick little neuro recap. Your brain brings in information through the senses and then the other side of the road on that sensory processing path is the motor control. So sensation comes in through all your senses and then you act on the world through [00:35:00] your motor control or your movement, sensory experiences that involve all of the good sights and sounds and tastes and feel together with move in the body with rhythm and sort of automatic movements really turn out to be great activities all the way through the late stage of this disease. A person may not recognize some of the more controlled movements or how to do something like put their coat on. But if you add a little bit of rhythm and there's music in the environment, just watch. They may be able to move to do a little dance or tap their foot to the beat of the song, clapping their hands to put more than one part of their body together. They're hearing the music, they're feeling the rhythm, and they're moving their body in areas of the brain that are preserved even in the late stage. We're seeing as the disease sort of marches on, that those activities can be modified to somebody [00:36:00] who spends most of their time in a chair, spends most of their time in a bed, because so much of that coordinated movement is lost. The person's mobility in their environment is considerably diminished. Caregiving starts to become an activity that happens in a very small space. Around the person's chair, around a person bad, but caregivers are still bringing these sinfully rich experiences in with something as simple as, you know, rubbing lotion on the person's hands and helping them spread it over their arms, in their body and on their face to smell a favorite scent or bringing in something that's warm. Fresh from the oven. A favorite flavor in a snack and making that whole sensory experience something that the person still relates to and connects with as a favorite. Thinking [00:37:00] about how. Those experiences can be modified with things like music. Rhythm, rhythmic movement, sight, sound, taste, touch. All of that can inform the caregivers toolbox for late stage dementia care. Peter Koch: Sure. And it really seems to help bring some balance to the quality of life for that person who can't do it on their own. So the caregiver, whether it's the loved one or if it's the professional caregiver who's coming in to assist the loved one. This all has so much meaning for the person who's living with the disease to be able to have good or better quality of life than to not have that because it does stimulate parts of the brain. It brings things back and it gives them an experience that they might not be able to have otherwise because they've lost the mobility to get out and to do things. And again, I was thinking back about my friend one of the last times [00:38:00] that Tai saw her dad. So he was avid skier, loved to be outside. And one of the last time I saw her dad before he went into hospice was when he came to the ski area. So they brought him up. He was in a wheelchair. But again, those sensory experiences like so the sense of being in the base lodge and the people talking in the music playing. You know, he's a rock and roll guy. So it was the 1960s, 1970s. Rock and roll was his thing. And that was the music that was playing in that particular day and the cold of being there in the wintertime as he came from the car into the lodge. You can see his face just lit up. And he was more like himself than he had been the last time I went to go visit him at his house. So. Right. Those sensory experiences are just that. They're so valuable not only for the caregiver, but I think for that quality of life of the individual [00:39:00] living with the disease. Dr. Heather McKay: In your state I've met so many wonderful caregivers in a number of state veterans homes. Your state has a wide support for veterans and families, and one of them Maine State Veteran times. I learned about a family who was struggling with some of the decisions and choices around end of life care for their dad, who'd had dementia for over a decade, who was clearly in the later stages, and that he slept more he was less mobile. He spent most of his time between a bed and a chair. But there was one particular ritual, a routine that this gentleman had been participating in with his son all the way up until this late stage of dementia. Little background. The older man was a blueberry farmer. He had passed. He passed [00:40:00] on that wonderful occupation to his son, who was now running the blueberry farm. And every morning before dark, his son would arrive at the state veteran's home to pick up his dad and taken to the farm to ride the tractor right next to his son. Going up and down the rows. Doing whatever the tour was, whatever the task was. Dad sat on the tractor seat right next to his son up and down the rows as caregivers at the veteran home had noticed. Dad was sleeping more. It was harder for him to eat and, you know, in the routine that he had always eaten, he was eating less. They were constantly trying to, you know, get as much nutrition and hydration in the man. But it was hard as he slept more hours of the day at the same time. His son said, now [00:41:00] hoist them up into the tractor seat. It's very hard for him to move his body once he gets there and he sleeps most of the time up and down the row. The question was, how long can dad still do this? And I thought, well, this is it. This is a question for the family. I knew the benefits of riding along that tractor from a sensory perspective. I knew they got the feeling of the sunshine and the sound of the tractor and the rhythm and the vibrations that were coming through the seat. Probably like rocking a baby to sleep. Might have been some of the best rest to the man got. But how long could he still do it? And I said, well, there's one important question, knowing that at the end of this disease, we expect there to be the continued decline leading to the person's death. We can't avoid [00:42:00] that. So the question is not how can we keep him alive? The question becomes, how can we maximize the quality of his life until the very end? And so I asked the son, what would you do if your dad passed away on the tractor seat next to you? And the son's answer summed it up. He said Heather I'd finish the row. In other words, in other words, he was ready for that. He had considered that before. And he decided that that was an okay way for his dad to like my granddaddy said, go on to his reward. Peter Koch: Sure. Dr. Heather McKay: When the care team realized that they were all on the same page and they were making decisions not about physical survival needs only, but about quality of life needs. Then they kept packing daddy, you know, getting [00:43:00] him ready first thing in the morning before the sun came up for his son to do all of that heavy lifting and continued helping that man be on the tractor right up until the end of his life. Peter Koch: That's a great story. Well, amazing. And just a really heartfelt story. It makes me think that there's more to the help than just the family. I think if you wait too long in order to engage assistance and help, you're not going to be able to help your loved one as much. So if you're the family caregiver, if you're the son or the wife or the husband who's taking care of a loved one there recognizing the signs so that you can engage, help earlier and have a good plan I think is essential to quality of life for everyone in that position, because I imagine that even though the dad in that story got a lot out of going up and down the rows, the son got just as much out of that, even though it was hard work to get [00:44:00] the dad ready and to move the quality of life for both of those people was raised because of what was happening. That can't be done without a team effort. Dr. Heather McKay: It can't be done without a team effort. And you're exactly right. The team in end of life care acknowledges there there's more than one important person in every story. And as teams prepare for end of life, caregiving and end of life decisions, these decisions are going to impact more than one person. And so that becomes a collaborative and team centered discussion, I think, in the story of the Maine farmer. One of the breakthroughs that the team at the veteran's home had was it wasn't a matter of making the right or wrong decision. It was a matter of coming together to make a collective decision. And when the team at the veterans home understood [00:45:00] that the family was prioritizing quality of life over merely physical survival or length of life, then they all felt more confident and more supported in the choices that they were making. As we're in a time now of considering risk reward in new ways, given our situation with a pandemic. Families are considering risk and reward more today than ever. And to situate our conversation about end-of-life, dementia, caregiving in this environment of social isolation and incredible risk analysis, I think families dealing with dementia have some important decisions to talk about. To talk about because there aren't right or wrong choices, there are opportunities for  [00:46:00]care teams to look at all of the options and help families make choices that are right for them. I mean, a step outside of the context of COVID 19 for a minute, because I've been reflecting on a family recently that I met years ago in my hospice work at the hospice home, which is an end of life care facility where families receive support in the last day of a loved one's life. I got a call from the hospice home in my local community who said, Heather, we've got a dementia care case over here and we could really use your help knowing that time is of an essence in the work of hospice home caregivers. I kind of went right over without asking too many background questions ahead of time. I was surprised when I got over there that the patient in the hospice home did not have dementia. I said, okay, wait a minute, catch me up. They said, well, the man in our hospice [00:47:00] home has very limited life expectancy. We expect that he'll be with us for a day or maybe less. But his family is considering a difficult choice to mom. His wife is living in dementia care unit in town in late stages of dementia. And the family's struggling with whether or not to bring mom here to see her husband, who's currently, you know, actively dying. I went into the family's room there and saw that the son and the daughter and they were obviously torn. What's the right thing to do? The son summed it up and he said, you know, we were about to lose our dad today, but we don't want to lose our mom to. Wondering if bringing mom over to this experience to cause her even more damage and long term damage? Well, and talking [00:48:00] a little bit back and forth, I ask the question, you know, knowing that  that's a legitimate consideration. I said, how long if they'd been married? The daughter said, 72 years. I say, go get her. We don't have time. Somebody has got to make a choice here. And I said, listen, it's not the time to teach you a tool box of dementia, caregiving, communication strategy. But if you'll go get her, I'll stay with you and help facilitate this visit. Let's take a chance. Seventy two years. Deserves it. They went over across town. And as the sun was feeling mom into the hospice home, I did a quick little scan and could tell she was chair bound. It was going to be hard for her to move out of that chair. Her language was minimal as she was coming down the hall in the wheelchair. She was waving some of the people that she passed and [00:49:00] coming out of her mouth with this cute little hey, hey, hey, hey, hey, hey, hey, hey, hey. She wheeled up to the room and saw her husband in the bed. And without any words, her face just dropped. And I stand beside her and said, there he is. That's yours. And she said, I had no idea he had to lay down. And I said, yep, he had to lay down. And our son, wheeled her over close to the edge of the bed where she pulling all of her strength. And I imagine every little brain cell she had to lift herself out of that chair. She stood up and sort of leaned over her husband's body and patting his face. She said, hey, hey, hey, hey, hey, hey, hey. I asked the daughter and the son to tell me how the two had met because I felt that if she heard this sound of her whole old familiar story, she'd recognize parts of it, if not just the rhythm of it. And they told the story how these [00:50:00] two had actually met in elementary school, third grade. They were in the same class. The teacher actually had to separate them in third grade because they couldn't stop talking to each other. And mom had always told the story that that teacher could not stand in the way of her and her husband getting together. And that was the funny part of the story. And you know what? Mom laughed. She laughed at that part of the story and nodded her head, I cued the family up to sing a few old familiar church hymns that were familiar to mom sitting back down in her wheelchair. She was tapping her foot and nodding her head to most of the songs until we got to the one that goes when we all get to heaven. What a day of rejoicing that will be. She started singing at the top of her lungs. She had every word. She didn't miss a note. And at the end of that visit, because I had prepped the family that we [00:51:00] might need a strategy for leaving. They said, Mom, let's go get something to eat and we'll come back. As they helped her put her sweater on, something that she could no longer do herself. That helped her put the sweater on and she wheeled toward the door. She kind of indicated she wanted to stop and the daughter looked at me like, oh, no, here we go. This is what I was afraid of. But we said turn back around. Go back to the bedside. One more hug. Tell him we'll be back. And she did and sat back down in the chair and down the hall. They went on the way out that door. The woman with all her limitations waving to the people at the hospice home was saying, thank you. Thank you. Thank you. Thank you. Thank you. And it brings it home to me. It comes home to me more now than ever. In the days of such tough choices, when decisions [00:52:00] that we make may put an older person at higher risk, whether it's high risk of infection, a high risk of a mobility problem or a fall or anything that could happen to a person and in stage of this disease. We are considering those risks alongside the rewards. For doing something as meaningful as saying goodbye to a loved one as of over 70 years. Peter Koch: That is a really moving story. And it highlights that it highlights the need for a plan that highlights a need to bring the caregivers into the plan. It highlights the need to have conversations about. Quality of life, what do we want for dad? What do we want for mom? How do we want to extend quality of life? What [00:53:00] do we want to do? Just kind of thinking back in my own experience and some of my friends that have had to manage parents with dementia or currently manage parents with dementia. It's really easy to not think about those things because they're hard things to think about for the family to make those decisions or even to think about those decisions, because you're thinking about the end of life for someone that you love. But you highlight the importance that you can't make those decisions in a vacuum. And you really shouldn't be making those decisions without parents, without having those conversations early on in. In the early stages, in the mid stages, so to be able to recognize the key points and the patterns that come up and that change that it's important to have those conversations and to not put them off so that at the end, when faced with a difficult decision like the family was with your guidance, they were able to bring a true gift [00:54:00] to not only the mom, but to the dad, and then for the family to be able experienced that. Dr. Heather McKay: It was it was something that to that family at the end of that experience, as positive as it was. And believe me, through laughter and tears, you know, it was a positive experience. They said at the end, we believe we did everything we could. We did. We did the best by our parents, the best we could. And I consider that a positive outcome. I want families at the end of this journey to say we did the best we could with the information that we had and the choices that were in front of us. It's that kind of resolution that I hope for families. And it keeps me on the mission of sharing information about the disease, letting families know the road signs and helping them understand the risks that are just inherent at the very end. So I always have to kind of take a deep breath. But [00:55:00] to explain what happens at the end to a person with dementia, if they go the whole way, I feel is a responsibility as a good hospice worker. So let me just outline three quick things to help sort of inform family members. Tough decisions, tough decisions. There's some risk. They're unavoidable. At the end of dementia, the brain mass shrinks by two thirds, leaving the person with one third the brain that they started with. And when you have that whole brain shrinkage like that, a person's end of life typically happens in one of three ways. First, central nervous system shrinks and loses control over the swallow reflex. It's an automatic action that happens without us thinking about it all through our life. But when a central nervous system shrinks, a person can't swallow safely. It's important [00:56:00] to know that feeding tubes and an artificial means of swallowing at this point only increase the person's risk for aspiration pneumonia. I'm going to repeat that. A feeding tube increases a person's risk for aspiration pneumonia. At the end of dementia doesn't make it better, makes it worse. So we know this is a natural course of the disease. The second thing that can happen is a constant recurring infection can eventually just sort of sweep over the person and the person becomes another vocabulary, word septic or has sepsis. And that means that an infection is sort of system wide and the whole body. We see that as a natural course of dementia. Not that we're not going to use antibiotics to fight infections all the way through. It just means that we're in a ready position on the day that the antibiotics [00:57:00] aren't enough because the person's losing their immune system. When the central nervous system shrinks, we get system failures. And the immune system was always her body armor, the body armor that helps her fight infections that are out there in the world. Well, without that body armor, there is no antibiotic in the world to replace a good, healthy immune system. So the constant recurring infections will eventually kind of overwhelm her immune system. And the third thing I call the domino effect, but it's really just described a cascade of problems that starts with one little seemingly innocent issue. A friend of mine who's taking care of her mother in the end stage of dementia called me up and said, Heather, I'm going down to Florida because mom has something. The matter is no big deal. The nurse said, but, you know, in the end stage of dementia, something little can turn into something [00:58:00] big. They saw on the scan that she had some little internal bleed. They weren't really worried about it today, but we were just going to be ready in case it case something got worse. An hour later, my friend called and said I couldn't get there. I couldn't get a flight to get down there fast enough. She passed away. She said it was too fast. And that's the domino effect when my son said it was too fast. She was not talking about 12 years of caregiving. She was talking about today. Today progressed so fast. And so the domino effect when a person doesn't have the resilience to bounce back can seem like one little thing tipped and boom, boom, boom, boom, boom, boom, boom. Before you know it, all the dominoes are on the table. When he when we know that that happened in the late stage of dementia, then it can actually support families to make those decisions. The way. That's right for then managing [00:59:00] those tough choices around risks and benefits. Peter Koch: So with all the unknowns, we know that the disease is going to progress, but we don't know how rapidly it's going to progress. We can identify certain cues and patterns. We can understand things about it in the moment, and we can know that ultimately the outcome is going to bring us to the end. However, there's a lot to know and there's a lot to understand. When should somebody be reaching out for outside assistance for home health care or to move to hospice help? How does a person make that decision? When should they do it in order to try to help with quality of life for both the caregivers and for the person living with dementia? Dr. Heather McKay: It's a wonderful question. And it takes us back to where we started, Peter, because at the time of diagnosis, it is the right time to start gathering information and making connections with. Not [01:00:00] just folks in your family, but health care workers and partners in your community, that will be a part of your story over the course of a disease that on average was for most families between eight and 12 years. So we're talking about a decade of caregiving and a decade of changes for the person with dementia. So the earlier we can get to diagnosis, the sooner we can start building our community of partners and we can start tapping information before we're in crisis mode to learn about the services of hospice, to learn about strategies and support services that could be helpful in the middle stage of the disease, or to learn about some simple communication strategies that can really help in the first year of the person's disease. You know, they're still just getting used to this diagnosis. And what challenges the disease is inevitably going to throw their way. So backing up [01:01:00] to the beginning helps us think at the end of our conversation today about being proactive to learn about and then explore options. It means that I tell health care workers of all stripes, don't hold back on this end of life care information. People need this information right upfront before they get to the stage of end of life caregiving. People need to know about hospice before it's the last week of a person's life when family members and people living with dementia can tap their full hospice benefit, meaning they get months of support before a person nears the end of life. Then the quality of life for not just the person living with the disease, but the quality of life for the family and caregivers. It all goes up. So I've done a little bit proactive. I say that because it makes me take a deep breath. [01:02:00] It's hard to talk about how somebody dies, especially when it's a crisis happening today. I think it's a little bit easier to talk about it in advance. Let some of those conversations flow naturally over the course of months or years so that families, when they reach this important, important chapter of life, the end of life. They reach it in a consensus in a way that they feel their team, their team, whoever that may be, their team is as solid today as it's ever been. One of the true kind of lessons that I took away from my experience caring for my grandmother alongside family members and many professional caregivers was that. The whole experience, as hard as it was, but the whole of the experience left our families stronger and more adaptive, ready for the challenges that life [01:03:00] was going to continue to throw our way. And for that, I have my grandmother to thank. Peter Koch: That's beautiful. That's really, truly beautiful. And, you know, it's interesting. I think if you go into that knowing the outcome and then you can build strength with your family like that and you can thank the person that had the disease for bringing you together for those pieces. I want to ask you if someone's looking for information about hospice like they might be in the midst of end of care, life choices for a loved one, or they might be in the beginning and they're listening to this thinking, well, where should I go? Where where's a place for someone to get more information about hospice care? Dr. Heather McKay: Hospice is one of the best kept secrets in our health care system. And I appreciate all of the work that the National Hospice and Palliative Care Association does to spread, the public awareness of what hospice is, who [01:04:00] can receive it. When are we eligible and where will we meet our hospice caregivers? All of those questions can be answered by visiting the National Hospice and Palliative Care Association's Web site. I can maybe dispel a few myths just quickly, hospice is for everyone. Every one in our country will be eligible for hospice as their disease trajectory nears the end. Can I personally think hospice for more than six months? Many people do. It means that they go by eligibility criteria or guidelines. Knowing that we don't have a crystal ball. So finding out what qualifies a person for hospice is really helpful. And the last thing I would say is hospice is available anywhere A person lives. People receive hospice in the hospital. They receive hospice in their own homes. They receive hospice in Long-Term Care Facilities. [01:05:00] And some people actually tap the services of an inpatient facility at the very end called a hospice home. And I have been inspired and taught by many hospice workers in all of those places. Some folks find it interesting to know because they didn't know before, but they find out that the hospice benefit extends to the whole family. When I say family, I mean anybody that the person considers family. Any person, anybody that is considered family is sort of named by the person. See what I mean? And that family benefit extends past the death of your loved one. For a year after a loved one passes, family members are still eligible for important bereavement counselling and support. Peter Koch: It's great information and I think great advice for people to go and look for information through the National Hospice and Palliative Care Association. [01:06:00] I just go to the Web site. We'll have a link in the show notes after the podcast drops so people can go in and find out some more information if they have questions. So I've got a couple last questions for you, Heather. And one question I think is an interesting one to think about is since you've had such a pretty intense journey with dementia over the over the years, what do you know now that you wish you had known when you started out? What's one thing that you would love to have known early on, either in your career or in your experience with dementia? Dr. Heather McKay: Well, you're taking me back to a moment with my grandmother again, that was over 20 years ago now. And it was when she first confided in me that she didn't feel herself. She didn't know what was happening. But she just felt like it wasn't normal. Something about her brain function didn't seem right to her. And it [01:07:00] was a hunch, but it was something that only she could have detected because she looked great, Peter. She was doing great. My grandmother went to work every day till she was 80 in a family business. You get to do that when you're the boss. But she knew about herself that something was different. And in that moment, I didn't know enough to say you should really get it checked out and talk to your doctor about it. You know, if I could go back to that moment. Well, all of these caregivers listening to us today are just nodding their heads. There's something that they wish they could go back to and didn't know then. What I know now, which is people in early stages of dementia, do sense that something's different and they may be the first person to actually detect the change. And if you don't feel like yourself, it's worth checking out with your doctor if for no other reason. But for a healthy [01:08:00] brain checkup, we know that having a good baseline for how your brain is operating normally is a really great sort of measurement point to include in all elderly checkup. Peter Koch: Yeah, that's a really great point. I was I was nodding my head, as you're talking about, that like yup I can see that totally see that. I had an experience again with one of my friends that came to me one day and said, you know, Pete, I just don't feel right like I've got something going on. And we talked about it a little bit, but it went on for months before we finally said, you know, you should probably go see your doctor about it. And it turned out in the long run he had ALS and that was, you know, end of life there as well. But that's a really great point. Like those hunches that people come to you and don't. Don't discount those, especially for loved ones. And getting that brain health checkup is a great piece [01:09:00] to have a baseline so that you can measure like where's where has been the decline? What do we need to think about or to worry about? Really, really great point there for the end. Dr. Heather McKay: If we could all if we could all include in our conversations with our doctors, you know, how how's my brain doing? Even though I feel normal today. Now, how's that part of my checkup. Peter Koch: Right. Hey, so last question. Is there anything that I should have asked you? But I. But I didn't. That we might have skipped over. Is there something that you want to let our listeners know about that we didn't cover? Peter Koch: Well, I don't think it was an oversight on your part, because I heard you mention something earlier in the conversation that that triggered me to share with you. This when you said people are moving through the stages of this disease at a different rate. And that, to me, is one of the million dollar questions that many family members and professionals will ask me. Heather. We [01:10:00] know the timeline. We've got some road signs. We know some strategies that can help in every stage. But how long is it going to take? How long will this last? When we're in middle stage, how long will we be there when they enter the late stage? How long will they hold on? And that question of just how long it all takes is the most difficult answer to pin down. And it's just because people move in a rate now that they may move in a pattern of change that's very similar, but they move at a rate or a speed that is very individual. And that can be one of the hardest things to sort of get a handle on is that we're going to do the best with what we can today. But we just don't know how long this stage will last. Peter Koch: Yeah, really great point. And I think it reinforces the that theme that we've had for the both podcast, which is to be aware [01:11:00] of the signs, to know the signs. Be aware of the patterns that are occurring with you, the person that you're caring for, and to be flexible because we don't know when that's going to happen. And if you can be flexible with that and you understand the signs and you understand what's coming next, then you can  move to that next stage without being wrenched out of your normal to move to the new normal because you're going to be flexible in how it's going to work. Again, great point on that as we come to a close here. Dr. Heather McKay: Thank you, Peter. It's always good to talk with you. And there's still more there will always be more to talk about in terms of dementia caregiving, living with the disease. As a country helping the millions of families that that are going to contend with this as the prevalence of all types of dementia is expected to rise. Peter Koch: No worries at all. So thanks for sharing your expertise with us today, Heather. Where can our listeners [01:12:00] find more out about you and your work? Dr. Heather McKay: I invite listeners to access the Web site. Partnerships for Health at www.PFHNC.com. They'll find more information about me. More information about education that I provide, as well as links to educational videos and other resources. I appreciate the partnership with MEMIC as well as others in your state. The Maine Health Care Association, all of the Maine state veteran's homes in our partnership. For years, I've learned as much from you as I as I have left behind. Peter Koch: Well, thank you very much for that. And we appreciate the collaboration, that partnership with you, too. Heather, we couldn't do this without you. We'll put the link to it, to the Partnership for Health within the show notes as well, so people can go there and find you on the web. And if they have questions, they can send questions to [01:13:00] you through your e-mail or Web site. And they can also check out the show notes, too. So thanks again for joining us today, Heather. Really appreciate it. Dr. Heather McKay: Thanks. Good luck to all the Mainers. Peter Koch: Very good. So today on the MEMIC Safety Experts podcast, we've been speaking about caring for someone in the late stages of dementia with Dr. Heather McKay, manager of Partnerships for Health in Hillsboro, North Carolina. If you have any questions for Heather or would like to hear more about a particular topic on our podcast. E-mail me at [email protected]. Also, check out our show notes at Memic.com/podcast, where you can find additional resources links to the first podcast with Heather, as well as our entire podcast archive. And while you're there, sign up for our Safety Net blog so you never miss any of our articles or safety news updates. And if you haven't done so already, I'd appreciate it if you took a minute to review us on Stitcher, iTunes or whichever podcast service that you found us on. And if you've already done [01:14:00] that. Thanks. Because it really helps us spread the word. So please consider sharing this show with a business associate friend or family member who you think will get something out of it. And as always, thank you for the continued support. And until next time, this is Peter Koch reminding you that listening to the MEMIC Safety Experts podcast is good, but using what you learned here is even better.