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EPISODE 5 [DISCLOSURES] [0:01:04] RG: Hello, and welcome everyone. My name is Renee Garrett, and I am your SpeechTherapyPD.com., podcast host for Brainstorms: Functional Neuro Rehab for SLPs. Before we get started, we have a couple of items to alert you to. Each episode is 60 minutes at length and will be offered for 0.1 ASHA CEUs. So joining us tonight is Adria Thompson. Her financial disclosures and non-financial disclosures are as follows. Adria receives an honorarium from SpeechTherapyPD.com for her participation in this podcast. She is the owner of Be Light Care Consulting. Her non-financial disclosure is that her grandmother has dementia. My financial disclosures are, that I also work for a large health system in the Commonwealth of Virginia, as well as for adjunct faculty for James Madison University and Old Dominion University. As the host of this podcast, I do receive reimbursement from SpeechTherapyPD.com. My non-financial disclosures is that I am the secretary for the Communication Disorders Foundation of Virginia. [EPISODE] [0:02:11] RG: So now without further ado, we welcome Adria Thompson. Adria Thompson is a speech-language pathologist with nine years of experience specializing in dementia care. She is the owner of Be Light Care Consulting, where she creates content on social media platforms for 265,000 professional, and personal caregivers, providing practical tips, and educational content for overwhelmed caregivers. In addition to content creation, Adria offers one-on-one caregiver consultations, creates continuing education courses, and works with companies, and brands in senior care to market their services. Adria is a sought-after speaker and has been featured on many podcasts as well as travels around the country to speak at events and conferences. She's passionate about increasing public awareness of dementia and educating others on the importance of quality care. So we really appreciate you being here tonight. Welcome, Adria. [0:03:13] AT: Thank you, Renee. I'm excited to be here. [0:03:16] RG: Great. I didn't put this in my non-financial disclosures. But my mother-in-law actually has a diagnosis of Alzheimer's disease, so this is a topic that's very near and dear to my heart as well, just because of the changes and things that we have seen early on. But over the past couple of years, specifically the changes that have happened and the rapid nature of how that's happened. If you want to jump in and just sort of give maybe how this sort of happened for you, and how this became sort of your niche area, and what you are passionate about. That would be really great. [0:03:55] AT: Yes. When I was in grad school, I thought I wanted to work with kids with disabilities. I thought that I liked working with some of the more complex cases, especially AAC or challenging behaviors. That is 100% what I had in my mind that I wanted to do. I think many people probably experienced this. But when I went out into the real world, and I got a job at a nursing home thinking, “Well, I'll do this for a little while, save some money,” and I ended up falling in love with it. I realized that it wasn't necessarily kids specifically that I really enjoyed working with. It was the really complex cases. It was working with people who others had given up on, advocating for people who no one thought that they had any abilities anymore. In the nursing home I was working in, that became individuals with dementia. I'll say, it probably took about three years before I realized I really have a heart for this population. As much as that was happening, I also was getting really frustrated with the fact that I had no idea what I was doing. I didn't know how to serve them. I knew that they weren't being provided the care that they needed, I knew that they weren't getting the therapy services that I thought that they needed. I honestly didn't learn a lot in grad school about individuals with dementia. I felt like I was just drowning in that caseload. Over the next five years after that, I just was like, I love these people, and I want to figure out how to serve them well. I just started gobbling up as much CEUs as I could about in the area of dementia, and really making a difference. Using evidence-based practice in the patients I was working with, it really made a difference that was noticeable to the whole building. Staff were taking notice. The therapy company I worked for asked for me to create some kind of training to make other therapists do what I was doing to feel comfortable as much as I was comfortable. So I created a dementia program, and from there, that's when I started my own business. I wanted to do this for myself and not other people, and Be Like Care was created. In that process, that wait, even after I started specializing in dementia, and really focusing on that, my grandmother got dementia. I started seeing from the professional point of view, and what it looks like in a care community to have someone with dementia under your roof. But then, I started seeing it from a caregiver's point of view, what family looked like, and the resources or lack thereof, I think we should say, that existed for them. Personally, and professionally, it's just made sense. I feel like this maximizes all of my strengths, and it makes me – I feel like I'm making a difference, and that's what we can all hope for. [0:06:58] RG: Yes, that's great. Like I said, I think I noticed far earlier than most people in our family noticed that it was just a typical forgetfulness. The things that were happening were not just, “I forgot where I put my keys.” It was, “I forgot that I left the stove on” or “I forgot that I left the sink on in the upstairs bathroom and left the house for the day.” Things that were not typical forgetfulness, it was those atypical things that we see. Kind of going back to when you were working in skilled nursing, did part of what the program was you helped, or you that you did create, what kind of communication support was that part of what you did? Because I think that's a really important part, so many people – my background is acute care, and now I'm an outpatient. In acute care, what happened was, everyone would say, “Oh, this patient's nonverbal” or “This patient doesn't eat on their own” or whatever it was. A lot of times, it wasn't that they were nonverbal. It was either they were hearing impaired, or the communication that was being presented to the patient was so complex that they didn't respond, because they just didn't understand, were not able to process that language. Was that part of what you implemented, was communication supports and training? [0:08:18] AT: The thing that I found to be most important in my practice, and what I was seeing when I was looking at research, and what I put in the therapy program I created was to base all of the kinds of interventions as speech therapists, but also for OT, and PT. Based it on what type of dementia and what stage of dementia someone has. I think that's probably an important place to start this conversation, is to say that, as a therapist, as a medical professional in general, it's important for us to understand what dementia is very foundationally, and what the different types are. Because I think anybody who probably works with elders knows that not everything we see is actually reflected as a diagnosis code in their chart. Not everybody necessarily has a diagnosis of a specific type of dementia, but we should be familiar enough with the different types of dementia to look at someone, to interact with them. Even if they don't have that code, to get an idea of maybe where they fit. The reason that's important is because we need to curve our expectations on what is possible, what is probable, what is appropriate for them. Let me give you a definition, then I'll give you an example. Dementia is basically a general term for changes in thinking skills. That can include memory, problem-solving, language, all of those things. But the other part of this definition is that, it has to affect their life, their daily life. It's a change in thinking skills that affects someone's life. If those two pieces of criteria are met in general, that is dementia. There are many different types of dementia underneath that. The most common type being Alzheimer's disease. What we should know to expect from someone with Alzheimer's disease at the very beginning is classic forgetfulness, short-term memory loss. That is normal for them. Then, there's types of dementia, like Lewy body dementia. Memory loss is not a symptom of Lewy body dementia at the beginning of the disease. We should not expect that. What we should expect is REM sleep behavior disorders, fluctuations in alertness and attention, visual hallucinations of bugs, children, animals. If we see someone in our care that is demonstrating those kinds of symptoms, and we don't know what dementia is, we might look at them and say, “Oh, well, that's not dementia, that's psych” or “That's not my problem.” We just have an improper understanding of what they have and how we can serve them. If someone with Alzheimer's disease start showing hallucinations in the early stages, we need to be concerned, maybe they have a UTI. But if someone with Lewy body dementia has a hallucination at the beginning, that's to be expected, that's normal, and that's okay. We need to train staff to expect that. To go back to answer your question of, what kind of communication supports is good for someone with dementia? We need to think, well, what does that mean to the type and stage of dementia they're in? Every type of dementia will go through many stages. There's many different scales that exist that describe the changes someone experiences over the course of dementia. Teepa Snow has the GEMS model, we hear the Allen Cognitive Levels. The one I like to use is the Global Deterioration Scale. That's a scale of one to seven. Once again, knowing what stage they're in, that will help us determine. Is it appropriate to expect them to verbalize their needs? Or is it to be expected that they cannot verbalize anything at all? That's necessary to know. It's difficult to answer the question of, what communication supports someone with dementia need, because it varies. There are many types and many stages. But I will give you some of my favorite interventions for communication supports, and that are based in evidence that I think every speech therapist needs to know. The first being, spaced retrieval training. Now, spaced retrieval training, and its very general description is, that we are going to have a prompt and a response. The prompt is going to be a question that we want them to be able to answer accurately. Usually, we use this a lot to memorize safety recommendations. We might say, what do you need when you walk, as our prompt. We want them to be able to answer that question appropriately. Then we want to train them in a response. Their response is what we hoped that they would do and remember. In this situation, maybe it's, “I always use my walker.” With spaced retrieval training, we are going to ask them that question, and expect that answer over a set of delays. We train them in that at the very beginning. What do you need when you walk? They say, “I always need my walker.” We go back and forth several times with that, and then we implement a delay. Usually, we start 30 seconds. After 30 seconds, we wait, and then we ask the question again. “Hey, Mary. What do you need when you walk?” Hoping that she's going to remember, “I always need my walker.” If they're successful, we double that every time that they're successful. So we go from 30 seconds, to 60 seconds, to two minutes, four minutes, eight minutes, and so on. But if at any point they fail, and they get it wrong, we go back, we retrain them, and we go back to the delay that they were last successful. So if they break down to eight minutes, we're going to go back to delaying four minutes. Spaced retrieval training is great for safety things, for personal history things. or like family members names, remembering things that are important to them, and things that don't change. We can use spaced retrieval training for so many things, so many things. It's something that I – and we could talk about this a little bit later, but something that I avoided, honestly, because I didn't fully understand it. I thought, “Well, if I can't implement this evidence-based treatment exactly as it's written in the research article, then I feel like I can't use it at all.” At a certain point, I was like, “Heck, I just need to figure these things out” and I just started practicing. [0:14:48] RG: It's interesting because, sometimes I think I use this and I don't think of it as – I guess, because I've been doing it for a long time, and I don't always think of it as spaced retrieval. But I just had a patient, we would rehearse at the beginning of a session. Okay, after you leave here today, what are the tasks that your wife and you agreed on would be your responsibility? Because some of the things that were happening for him was that, he would just not be able to initiate the task, the simple thing of getting dressed. He has this – I called it the museum, the clothing museum is what I actually call it. Because he has this amazing wardrobe of things that he's collected throughout the years. He would get very frustrated, I think, overwhelmed. When he's overwhelmed, and he doesn't initiate. We narrowed it down to picking – someone having a selection of three outfits. That is your responsibility. We would talk about five or 10 minutes into the session. After we've rehearsed it a couple of times, like you mentioned in that space, timeframe, we would talk about it and bring it up again. Then at the end, always kind of concluding with that. It was very helpful for him, and his wife would come in and go, “Hey, rehearsed all that with you, and then we got home. And guess what, guess who had to pick that outfit?” If I gave him the task of homework, he would really complete it, and initiate, and do it. But if she was in that role, and I think that's what I'm thinking of when I think of those. Again, I think a lot of professionals, if they don't work with this population don't understand what we mean by communication supports. Because it doesn't have to be something super complex, like how do you – when you get into the car, what do you do next? It doesn't have to be a sequencing task that's that complex. It can be something as simple as, “Okay, you pick your own outfit” or “Okay, you have a choice of two things for breakfast” and we rehearse that several times. Thank you for bringing that up, because that's just – I think that's really helpful. Again, we always call it what it is than we should, because – [0:16:57] AT: Yes, we need to give ourselves credit for that. Yes. In spaced retrieval training, most of these kinds of interventions, if you pick it apart, we call it other things too that are evidence-based. Rehearsal, repetition, we know that's good for memory. It's just a systematic way that's been proven for someone with memory loss. Well into the mild and moderate stages of dementia, people can learn things through spaced retrieval training. It's really important that we realize that the power of that, and the difference it can make not only for the person with dementia, but for their caregiver too. Because that's one less thing that an overwhelmed, overworked, stressed-out caregiver has to do. You're right, it can be like for someone when they go to activities. When you walk out of your door, which way do you turn? Right. To go out of the dining room or to go to the – It doesn't have to be these like really big complex ideas. We can implement it in so many areas. We always recommend that we do it one at a time. We master one prompt and response. But I've used this – I think probably the most severe case was probably someone, if you know the Global Deterioration Scale, she was a late stage five, so moderate dementia, almost into that moderate-severe range. She was able to remember her walker, which decreased her falls significantly by implementing spaced retrieval training. But also, interestingly enough, understanding the semantics that she understood, which is also something that we often overlook. The physical therapist that I was working with put signs all over her room, “Always use a rollator.” She had a sign on her rollator, on her door, everywhere you looked, it says, “Use your rollator.” The physical therapist told me like, “She will not remember. I've done all the things. I've made all the signs that you do, and I don't know what to do.” I was like, “Let me take a look.” I go down, and I plop down next to her on the couch, and I say, “Hey, Mary. What's a rollator?” She's like, “I don't know. Everybody's talking about that thing. Look at all those things. I don't know what that is.” Her rollator is sitting right beside her. I was like, “Yes, that is so strange. Well, what is that thing beside you?” She goes, “Oh, that? That's my buggy.” [0:19:26] RG: There you go. [0:19:27] AT: Yes. Just changing the language, and stepping inside of that person, seeing the world from their eyes, that made a difference. We changed it all to, “Always take your buggy with you.” We spaced retrieval training to remember your buggy, and that's what made the difference. In some, it's so easy to just pass over that step. [0:19:49] RG: Though a lot of people – in acute care, and I'm sure skilled nursing too, because I did my clinicals in skilled nursing. But I feel like, a lot of times, people – there's high staff turnover and we have to remember, for people who are residents in long-term care or skilled nursing, they come into acute care. and everything is different. The sheets are different, the lights are different, the care partners are different, the staff is different, the food is different, like literally everything. We have someone who already has these challenges with memory, and communication, who we now are expecting to just, you come in and you're like, “Hey, good morning.” They're like, “Wait, who are you?” They're quiet because they are trying to process all these new pieces of information, whether it's physical components, or sensory, or both. People forget that, they don't communicate maybe because they're not given enough time or whatever that thing is, it's just kind of triggering that shutdown. Then, I often would come in and be like, “Good morning. My name is Renee. How are you?” “Oh, good morning.” You get that, and the nurses over there are like, “What in the world?” You have to still talk to these people. No matter what the diagnosis is, our job is to make this person feel at ease. No matter what the setting is, part of our job is to make that person feel comfortable so that they aren't afraid, and they are less off put for lack of better terms for everything else that's going on around them. I think that's a really great point, in including other members of the care team. [0:21:28] AT: I know. We mentioned signs a second ago, but that's the next thing I was going to talk about, which is external memory aids. I think what you're describing in acute care fits along with us so well. Because what we see a lot of times in the hospitals are signs that say, “Call don't fall.” Or maybe if they're really good, the sign says, “Call your nurse if you need help.” Well, if we think about someone with dementia, and their perspective of the world, they are disoriented, they have short-term memory loss, they don't understand, they have anosognosia, which is inability to be aware of your deficits. We have all of these cognitive deficits happening. They might look over to the wall and see that sign that says, “Call the nurse when you need help.” This is a great example to kind of spell out the fact that we are making language way too complex for someone who already has a difficult time accessing language. Think about just the word call, we'll break it down, call. What do we think about when we hear the word call. We think of a phone, right? When we say, “Call the nurse,” that might be communicating to them that they need to pick up a phone and call someone. PS, what does a phone look like for someone who is 85 years old? It probably has a spiral cord on it in their minds, not a cell phone. Much less a red button that's on their call button. Call is the wrong term to use here, first of all, because that's not actually what we're asking them to do. We're not asking them to pick up a phone and call someone. Then we say, “Call the nurse.” Well, if they're disoriented, and they don't even know they're in a hospital, then how are they supposed to know that the strangers coming in and out of their room, that one of them is the nurse, one of them is a social worker, one of them is a doctor, one of them is the janitor. They don't know where they are. So therefore, they don't have the context to understand who the nurse is, who they're actually supposed to be calling. Then if we go on further, “Call the nurse if you.” The term you, that seems like it's very direct. I can't tell you how many times I've worked with someone with dementia that looks at a sign that says the word “you” in it, and they look at it, and they say, “I wonder who that's for.” Like, “Use your walker” or “Call your daughter.” They're just like, “I wonder who that sign is for.” Because once again, they don't have the orientation to know that this is their room, this belongs to them. So everything that's referring to you, and that context is referring to them. Then we say, “If you need help.” Well, like I said before, individuals with dementia have anosognosia, they don't know that they have a deficit. Therefore, they don't know that they need help. Much less when they need help. They don't need help when it comes to brushing their teeth, or maybe they don't need help for eating food, like self-feeding. But they do need help when they go to the bathroom, they do need help when they get into the shower, they do need help when they go out into the community. The fact that we have a sign that says, “Call the nurse when you need help,” it's making the directions way more complex than they're capable of understanding. That is a great example of the difficulty of language in a care community of whatever kinds of that is, a hospital, a nursing home, or even someone at home that other people don't think about. To your point, as speech-language pathologist, we are experts in communication. We are experts in breaking down complexity of language, and comparing that sign to the skills, and the cognitive, and language abilities that someone has, and saying, “Okay. These don't match up.” Instead of, “Call the nurse when you need help,” we say, “Push the red button before – I push the red button before I get out of bed.” So that when they read that, it tells them exactly what to do and when to do it, and it uses first-person language. When they're reading that in their mind, it is further kind of making it apply to them when they see “I” statements. That's a one example I could give out, of so many, about our role in supporting people communication. Because remember, communication, we know this is not just about talking. It's about comprehension, it's writing, it's reading, all of those things. When we say someone isn't communicating, well, they are. They are with body language. They are with their facial expressions. When they put their middle finger up in the air, or spit at you, that's communication. It's also communication when they smile, and when they hold your hands, and when they move closer to you when you get in the room. That's communication too, and so we need to act almost as translators of the communication that they are demonstrating with the rest of the world, but isn't picking up on it. [0:26:53] RG: Yeah, I agree. It's not just staff, it's caregivers, because so many people take on that role and maybe aren't equipped. Because I think, again, that's one of those things that people think they inherently should know or instinctually should be able to pick up on. It's really not instinctual. For most people, it's a learned skill. It's just like people who are not equipped to be a caregiver. It's very difficult and guilt-ridden for a lot of people to say, “No, this isn't the role I'm comfortable taking on.” Again, when we think about communication, we have to be that person sometimes that that's intermediary between staff, who can be, lack of a better word, judgmental and say, “Oh my gosh” when someone says, “Son.” He's the only one. He's not going to take her home and take care of her.” Well, sometimes that's not their role that they're capable of doing, and it's not the role that they're set up to do. Caregiving is not an easy role. Sometimes too, for me, being a communication professional, almost everybody with the exception of my husband and the family is not listening to my suggestions at all. It's like have no knowledge and no training, despite the fact that I don't claim to specialize in dementia, but I do have an outpatient. I do have a good chunk of people, and certainly, when I was in acute care. I was in a very rural hospital, initially, that grew into an area of growth. But we still really maintained a large population, because we were sort of the one hospital that was close to really three pretty big skilled nursing facilities with long-term care units. Then one skilled nursing facility that also had an assisted living and an independent living side. We got bombarded a lot of times with the folks who had UTIs, or maybe had a change in their feeding status, and maybe now had some dysphasia that wasn't as prevalent before. Again, with the pandemic, we saw a lot, because we saw people who came in from skilled nursing and long-term care who maybe didn't survive. But then the ones who did had more pronounced dysphasia because of the muscle wasting that occurred as a result of a respiratory disease like COVID [BREAK] [0:29:23] ANNOUNCER: Are you taking advantage of our new amazing feature, the certificate tracker? The free CE tracker allows you to keep track of all of your CEUs, whether they are earned with us at SpeechTherapyPD.com or through another provider. Simply upload your certificate to your registered account, and you're all set. So come join the fastest-growing CE provider, SpeechTherapyPD.com. [INTERVIEW RESUMED] [0:29:50] RG: Sort of moving into those mealtime interventions, because I know we have we have a lot to kind of cover in a short amount of time. There's so much research now that has come amount that that talks about maybe setting up all the way isn't appropriate for everyone, depending on their trunk strength and their postural abilities. One of the things that I think I saw quite – I don't know why this is over the last four years before I left acute care was, we were getting a lot more people with kyphosis, so that bent over posture. So that the more we sat them up, the more forward-leaning they were, and it was not good for swallowing. But it wasn't necessarily a true dysphasia because it was more positional. Again, I think we get consulted a lot of times on things like that that are – we are the intermediary, we're the person who's educating the staff, or the person who's intervening or advocating for these patients. But yet, when you go in, and you're like, “It doesn't really look like a true dysphasia. What's happening is X, Y, Z.” Sometimes people are like, “Mm-hmm. Okay. What she was called?” There's so many issues and we’re still stuck on the coughing. I can't tell you – if I had 50 cents for every time I said, “Coughing is not always a bad thing. Coughing is the way we protect our airway.” We really need to have more information with an instrumental before we started saying aspiration pneumonia, and before we start saying, “Oh, she's choking.” That's my favorite. “She's choking on everything or she's chewing her pills.” Well, golly, gee. [0:31:25] AT: Yes. Well, maybe it's because you didn't tell her that they were pills, and you just put something in her mouth. She chewed it like she does in every other food. Imagine that. I mean, we could do an entire hour on dysphasia and dementia. Here's the foundation. Instrumentals are important more so than ever with individuals with dementia, because they are not accurate reporters of their experience, their needs, their sensations. Individuals with dementia will experience changes in how they perceive sensations. Often, I'll have people ask, “Why do people with dementia not want to drink anything? Why don't they drink water? They get dehydrated all the time. Are they not thirsty?” Well, maybe. Maybe their sensation of thirst changes. I think really, what we see in evidence is that the perception changes more so than anything. It's not that they don't feel thirsty, it's that they feel thirsty, but they no longer can understand. Number one, like put a word to it, understand what that means. It's like, “Oh, that's thirst, that feeling of dryness in my throat, that my lips being dry, my mouth just feeling so uncomfortable, that that is a symptom of being thirsty.” They have a difficult time assigning it to that term. Then, also, we have the issue of, they don't know that that glass of water sitting by their bed is the thing that's going to quench it, that's going to make that feeling go away. There's changes in sensation, there's changes in perception. For individuals with dementia, especially in the moderate and later stages, they're not reliable reporters of what they're experiencing. So instrumentals are extremely important. But then, there's also the role and conversation about palliative care and end-of-life care. At what point do we say – if you don't hear anything else in this hour, please hear that feeding tubes are not indicated for individuals with moderate and severe dementia. [0:33:27] RG: Absolutely not, I agree one hundred million percent. [0:33:31] AT: Yes. That is not an option. That is not something that we – I think that we even should be communicating to cover ourselves for liability, or whatever the argument might be. It's against their quality of life. It can lead to infections. I mean, it's not managed well, it's not improving them even medically at this point. We've got a neurodegenerative disease that has a progression that we understand. Swallowing issues are to be expected, once again. Know our expectation so that we're not surprised by things. All of that could be a discussion in and of itself. What I do want to just take a second to say is that, many mealtime issues where we have individuals who are losing weight, or that they are getting dehydrated frequently. So many times, even like on speech therapy, like Facebook groups and stuff. I see people say, “Well, what do I do when this person is losing weight and they have dementia?” An immediate response a lot of times is, “That's not our job. Talk to the dietician, that's not our job.” What I want you to ask yourself is, if the person with dementia had better communication skills, if they had improved ability to communicate their wants, and needs, their perceptions, and all of that, would they be easier to care for this? Would they more willingly eat or drink? Is it that they're confused? They don't know that the food is there. No one's prayed for it yet, and that's what they're waiting for. Is it that there's way too much stuff on the table and they can't even attend to the food? All of those things are important. Where the line is between what we do with cognition and what occupational therapy does with cognition, I know that it gets so messy. But the way that I have come to understand cognitive communication disorders, if they could communicate, would this situation be easier for them? Largely, the answer is yes. They can't communicate the preferences, they can't communicate that they don't see their food. “What food? I don't know. I can't tell you I'm hungry, because I don't understand this sensation I'm having.” That is impeding their ability to interact with the world to ultimately eat or drink. That is something that is our job, and that is something that I think is worth investigating, because we can make a difference. So yes, environmental modifications during meals. That's a huge part of it. But then also, thinking about that person using person-centered care, and thinking, what is it that we could do to make them ready to eat? Like I said, might be it's praying. I often will like to get fast food bags, like McDonald's bags and containers, and put other food in it, because that is something that might be motivating for that person. They love McDonald's every day, but we can't afford, or it might not be healthy for them to eat it for every single meal. But let's put all their food in a McDonald's bag, and all of a sudden, it's motivating for them to eat. There's all kinds of cool creative things we can do once we really understand the person and see the world from their eyes. [0:36:39] RG: Yes. Back to the water, water has no taste. So you're dealing with someone who has taste changes and sensation changes, and they may not, again, in the compound, they may not know that's theirs, but they also may not know – they may not be motivated to drink it because it doesn't taste like anything. [0:36:58] AT: And they might not be able to see it. It's clear. [0:37:01] RG: You're right. Yes. The other part is that, the same gentleman I was talking about, he was having difficulty with – he had lost some weight, and he was having difficulty with meals. We took, probably two whole sessions and really delved into it. What it boiled down to was, he and his wife would eat separately, so she would sit in her chair, watching her TV program, and he would sit in his chair in a separate space. Maybe she's in the bedroom, and her chair watching TV. He's in the den in his chair watching TV. Unless she brought him his plate, and even then, sometimes he still would not eat. Then they were talking about going to breakfast after some of our sessions. So I would say, “How does he do when you go to a restaurant?” She'd be like, “Oh my gosh, he does great. He eats everything on the plate.” I'm like, “I got it. I got it.” The problem is that it's an event when they go out. He's looking forward to it, it's a thing, they're together, they're eating together, they're fellowshipping together, they're chatting together, what have you. When you're at home, it's not an event. I have this thing that you've given to me, and I'm more interested in watching. He would say, “I'm more interested in watching my Westerns than trying to figure out what I need to do with this food that may or may not still be warm.” Even if he took it to the microwave, oftentimes, he would heat it up, and leave it there because he went back to his program, and got engrossed in that, and then just totally lost. He said, totally lost his train, which I thought was so cute. I lost my train, I lose my train all the time, buddy. But I think that's a really important point is, you're dealing with these things that we think are a little bit more complex, like perceptual changes in sensation. But that task initiation and making that mealtime more of an occasion or an event, which is why I think so many places like assisted living facilities will have that dining room where people come to together, and they sit at the same table with their buddies, and they eat there. It's an event, and it's something they look forward to. We tend to see them participate more and maybe be engaged in the task of eating a little bit more than someone who's left in the room or at the common areas with a plate that they look at. Why, why, why did they give the little sweet lady who weighs 85 pounds the – I call it the truck stop breakfast? She opens the tray, and it's like two pancakes, three pieces of sausage, and two eggs, with the side of toast, and peaches. It's like, “Wait. What? Who eats that?” [0:39:47] AT: For individuals of this age who grew up shortly after, or maybe even during the depression, or during World War II, where there were rations, there was food scarcity. It is ingrained in them to not waste things, and so they get overwhelmed really easily. So yes, just splitting things up into smaller meals. I would have patients that we would just bring little T-plates of food to them. But they would eat like four of those plates, because it was small each time. We just kind of spaced them out 10 minutes apart. But if you gave the same amount of food on a big plate all at once, they wouldn't touch it. So yes, there's so many cool things. Having someone eat with a person with dementia, that also provides so much context and cueing that they can mirror those movements that you're doing. Like you said, initiation. Anything like that is super helpful, and it's absolutely within our scope of practice. [0:40:44] RG: Yes, I agree. But I'm like you, I felt like we could – the mealtime thing. Again, I remember being a student in my clinical rotation. One of the things, it's not – this was something that my clinical instructor did with a lady that she'd had, because she'd worked there for probably close to about five to eight years. She had a lady who kept popping up on the caseload. What she would do was, she would have something Apple Cinnamon scented in her room, in the ladies' room, because she was not someone who could get up, and be mobile, and go to the dining room. She would have that in the room so that she had that heightened sensation, that taste, smell kind of connection. One of the reasons she kept getting consulted was because she wouldn't eat for other care partners. There was a lot of things that were missing. Again, high staff turnover makes it really difficult when you're trying to implement programs and training. Then the next week, you go in, and it's a completely different staff, and it's new people constantly. It's really challenging to maintain that level of care for the patient. But then, you go in and you do something that's so seems so simplistic, but it's, again, making it more of an occasion or it's heightening sensation. It's sort of waking up that smell-taste connection. I think that's just a really – it was really powerful for me as a student, because I'll probably never would have thought about it. When people are selling houses, what do they do? They have an apple cinnamon candle, or they bake something Apple-ish, cinnamony. That's the smell, you get the welcoming, homey comfort thing that you get, that sounds kind of silly, but it worked. [0:42:30] AT: It works. [0:42:32] RG: So yes. Let's talk about caregiving, because this is something for me, I've presented on caregiving now a couple of times. I'm presenting on caregiving across the lifespan at ASHA this week. The first time I really did a deep dive presentation on this, I interviewed my father-in-law, because even though I hadn't known for a while just based on a professional standpoint, and what I was seeing with my mother-in-law, she had recently gotten a diagnosis. So it's only been, I think now, probably three years, but she's been exhibiting symptoms well over 10. But I interviewed him as part of the webinar that I did. My father-in-law does some ministry on the side. He can be very – we call it preachery, which sounds terrible, and I don't mean any disrespect with that. But he gets very focused, and very serious and he gives you the answer he thinks that you need to hear any. It's very difficult to crack that, and get to the meat of what we want him to really talk about, is what it is like to be a caregiver. He often will attribute a lot of the things that she experiences to her hearing loss or her visual changes associated with diabetes. While those things are contributors to the overall picture, he neglects to identify things, like right now, we're having a big issue of, she calls it the QVC. The QVC was on last week, last week we were there. The uncontrolled purchases is what we're dealing with right now. I've tried to encourage him to maybe get a prepaid Visa card for her, or set up her card. She has now with a set spending amount so that she can still have that freedom of purchasing, but not overspending, or overdoing it, because she gets that sort of obsessive behavior of, “Oh, I love those shoes. I'm going to order eight pairs” or “Everybody's getting a Waterpik flosser for Christmas.” That kind of thing. I think that's one of the things with caregiving that we really sort of overlook, is that there's so many resources, and really great supports. A couple of people have sort of laughed when I said this, but I saw one of your posts today about an upcoming project in AARP. Their website is incredible. They have so many resources. There's actually a lot of research that they've been involved with the Alliance for Caregiving. It's incredible to me when you start looking at how many resources are out there for people that they aren't aware of, beyond just like the Alzheimer's Association and things like that. Is there anything specific that you feel like is a barrier for caregivers, or maybe just a resource for caregivers that isn't well known? [0:45:30] AT: Yes. Caregiving is so hard, and it wasn't really until I started Be Like Care Consulting that I started communicating with caregivers more so. Because in the medical setting, you talk with caregivers when their presence, and like sometimes, you call at discharge or evaluation. I only had a few families that I really communicated with throughout the entire time that we would I would be working with one of their loved ones. A lot of times, people didn't know, I think. I think that's the biggest thing, is that caregivers just don't know that they have the right to information. They don't know that they can ask lots of questions, and that it's not a burden to us as medical providers. I welcome it. I know some people might feel differently. But caregivers are – well, to define that term I mean, anybody who provides care to someone with dementia could be considered a caregiver. As speech therapists, we are caregivers. I think that it's important to realize that we all play a role. You used this term earlier, and I like it a lot. I use it too. It's just care partner. That's just kind of making the statement that we are really partnering with the person with dementia, and working with them, not to them. Not doing things to them to improve their care in whatever way. But caregivers, which are family members, or family, or friends who are caring one on one for someone with dementia, they are not equipped, they are not trained. They did not sign up for this. They didn't agree to this. Not everybody makes a choice, and signs their name on the dotted line, and says, “Yes, I'm going to sacrifice all of my time and resources to care for this person in my life.” Oftentimes, people just find themselves as a caregiver. We need to realize that as speech therapist, that not everybody has the resources. To your point earlier, not everybody should be a caregiver. When we hear judgmental things like, “Oh, her son never comes to visit her, and that he should take her home.” I can tell you, we hear the commercials about abuse and neglect that happen in nursing homes. But I can tell you, that there are a million amazing nursing homes with really compassionate and wonderful caregivers. But there are also just as many terrible caregivers who are caring for someone at home. Not to say that they're terrible caregivers, but they just don't have the skills, they don't have the resources to appropriately care for someone at home. Just because someone keeps them on a home until the day she dies, although that might make them feel better inside, they may not actually be providing the care that person needs. I can say that as a family member who identifies like that. My grandmother is living in a nursing home. I am, some people consider a dementia expert. I can equip my family, we have the resources to keep her at home. But ultimately, we realized that her staying home is not is what's best for her. Being in a nursing home has provided her so much stimulation, and social interaction that she, as a Sunday school teacher and a homemaker whole her whole life needs desperately. She was deteriorating. Even though we met her physical needs. Well, her social needs could not have been met at home. She's doing wonderful at a nursing home. Are there issues? Of course, there are. Are there times that we get phone calls, like it's principal's office because of some of the behaviors that she exhibits? Absolutely. Ultimately, we know that she's lived much longer at that nursing home being provided the care that she has, and our relationship with her has been improved because of that decision. We can be judgmental all we want, but it's not until you're in that place until you realize that it's not as easy as checking a box, or having the money, or whatever it might be. Caregiving is really hard. As speech-language pathologist, I might be biased, but I believe, we are one of, if not the most important medical provider that will enter into someone with dementia's life because we are communication experts. Individuals with dementia fundamentally have communication deficits, cognitive communication deficits. If they could communicate, would their care be easier? Yes. Then that means, we have a role. As speech therapist, we need to give ourselves credit for the kinds of things, the services that we provide. We sometimes take it for granted, perhaps we don't know how to document it. But that's not to say that the services that we provide aren't skilled, and aren't improving the life of the patient that we're interacting with. We make a huge difference. If we educate ourselves about the types and stages of dementia, and the interventions that are evidence-based that can help them. At the end of the day, we need to make individuals with dementia feel safe and loved. I know that's not written anywhere on the scope of practice for ASHA, but that is what we do. That's what we do. If I can actually answer your question, which is the resources. [0:51:02] RG: This is great. This is great. [0:51:04] AT: The resources that exist. Okay. AARP also has a really great scam section. I thought of you when you said that. They have a scam monitor, they have a scam map. You can look in your local community what scams are happening. There's a hotline you can call and say, “My grandma got scammed. This is what happened. What do we do?” They help you out with that. So that is a really great resource. Yes, the Alzheimer's Association has a lot of great support groups, and education, and programming. For individuals with young onset Alzheimer's or young onset dementia of any kind, like frontotemporal dementia, and sidebar. That's the same term as early onset. We're just kind of moving more toward young onset. that term, because people get early onset and early-stage dementia confused. Young-onset is any kind of dementia under the age of 65. If you know anyone who qualifies under that, I encourage you to be aware of the nonprofit organization called the Lorenzo's House. Lorenzo's House is based in Chicago. Here's a disclaimer. I do consult with them some, but they're wonderful group. They provide resources for families of individuals with young onset. They have a cool program where they match caregivers. Two wives that have husbands with early onset, or young onset in the general area, they will connect them. Those kinds of connections have resulted in families going on vacation with each other, and just knowing someone in the world that is experiencing the same thing they are. They also have awesome programs for children of people with young onset, which doesn't exist. Lots of ways that they can get involved in to learn more and to feel supported. That's really important. Hilarity for Charity is an organization by Seth Rogen, the actor, and his wife, Lauren Miller Rogen. My disclaimer, I also like to consult with him and I create content for them sometimes. But Hilarity for Charity is also a really great resource. They have a lot of brain health initiatives, encouraging younger people to have good brain health, so that ultimately, they can decrease their chances of dementia later. They have support groups for some more niche areas like Black caregivers, male caregivers, and bereavement groups for people who just lost someone with dementia. They also have a caregiver grants program so you can sign up to potentially receive a grant for caregiving, so you get so much a week, and you can use that to pay for caregivers coming in to give you some respite. Those are some of the ones that pop up to my mind immediately. The last one I'll say is, the Cleveland Clinic, Lou Ruvo Center for Brain Health is a clinic in Las Vegas. They have a ton of online resources. They have lunch and learns that are incredible. They're led sometimes by neurologists and other really smart people. I will listen to them when I go on walks just to learn more about dementia. They also have a ton of online programming for people with dementia, like music therapy. They have art, they have movements, a lot of support groups and things like that. Those are some good resources to get you started with and to share with families that you interact with. [0:54:29] RG: Yes. You brought up another really good point about respite care. I think, again, a lot of professionals even don't understand what respite care is and what's available to them. You mentioned the resource, but can you kind of describe what respite care is for those people who may not be as familiar with it? [0:54:51] AT: Respite care is basically giving a caregiver a break. Respite care might look like a woman putting her husband in an assisted living for three weeks, so that she can take a nap, or go on a cruise with their sister or whatever it might be. Respite care can look like a big chunk of days. Sometimes you can do respite care for a month, or three months in like assisted living communities. We can call this a test, testing it out to see if this is a good fit for someone. But also, there are many reasons why caregivers might need an extended break like that to attend an event, or just for their own health. Maybe they're going through a procedure or something and they need someone to step in and care. It can look like someone with a condition like dementia going to a place and staying there for a while. Respite can also look like 30 minutes, it can look like three hours. Where someone from church comes over and sits with your loved one while you go get your nails done, or while you go in the bedroom and take a nap. Respite is just a caregiver getting a break. Some, often, caregivers will have to pay for that, because there's not necessarily people in their life that are willing to step up and provide that for them. [0:56:14] RG: Yes, that's great. Again, such a great thing to know about, because I know sort of – it's not really off-topic, but caregiving across the lifespan, respite care, I think, for me – I know when I was a student, and in graduate school, I knew about respite care for parents who maybe had a child with special needs or was neurodivergent. Maybe they had some respite care or someone. Because a lot of the people that I went to grad school with actually did that. It was a way for them to get some – not necessarily clinical hours, but more sort of practical experience about different neurodivergent things, and give them experience not only in the field as a caregiver, helper. But then also, sort of learning the family and what their experiences look like. I think that's a great point to know. Because, again, there are some places, and some ways, and some training that people can do if they are the primary caregiver to make that more affordable. Meaning that they can be trained as the caregiver so that they get a stipend that helps financially. Again, I'm not – I wasn't 100% sure on – I know how my state works, but I think, doesn't that vary from state to state on what their – [0:57:29] AT: I'm in Kentucky, and there's no program where caregivers can be paid to care for their loved ones. But I know in some, you can get training, or you could become a CNA, or something. You could be almost like on staff as a caregiver and be paid by the government. [0:57:47] RG: Yes. I have a patient I just discharged today, it was unrelated diagnosis, but it's questionable about the level of caregiving, but that's what the situation was for them. And yes, it's just so interesting to me to see how that does vary from state to state, and how some of those things that we think – again, if it's someone who's a caregiver who is invested, and maybe they've had a change in their employment status, maybe it's someone who's retired, who now has to go back and take on a part-time role, or even potentially a full-time role. Because again, not only is caregiving not easy, just from a physical and a mental psychological standpoint, but financially, caregiving can really be an excruciating thing if the person has multiple needs. That's another sort of – it could be a really long topic to discuss. Can you kind of talk about what that looks like in terms of what are the costs associated sometimes with caregiving, and just the brief overview of that? [0:58:50] AT: Caregiving in the United States is costing billions of dollars. I mean, if we want to look at it, big picture, it is expensive. But even if someone is keeping mama at home, and they can't necessarily afford to take them to an assisted living, which can be $5,000 a month easily. More upscale ones are way more than that. Memory care can be $7,000 a month. Then, even keeping mama at home though, there's a lot of cost there. It's not just supplies like gloves, and briefs, and things like that, but it's the cost of ER visits, and getting helpers to come in when you can't physically do it or mentally do it anymore. All the doctor's visits, and the transportation and all the modifications you have to make to your home, knowing that this is a neurodegenerative disease, and that it's only going to get worse. It's overwhelming for someone, right? Because it's like there's not an end in sight. This isn't something that could potentially get better. Caregiving is really expensive. If we can empower caregivers, if I were to say what's the best resource that a speech therapist can give to a caregiver. Practically, it's yourself, it's your skill, it's education. Sometimes it's a listening ear, or a shoulder to cry on in tough moments. Medicare might not see that as a reimbursable moments, but it's absolutely part of our job, and it's part of being human. We can provide absolutely incredible support, and training, and education to these caregivers who have no other outlet to receive that. [1:00:38] RG: Yeah, that's compassionate care at its finest, really. I think, again, that's so incredibly important because sometimes active and supportive listening, really. We love to talk because we're communication specialists, but not everyone is prepared to listen. Sometimes that's just – our role is to listen, and encourage, and give them a hug if they need hug. I mean, it's like you said, and I said too, it's a tough job. A caregiver is a tough job. To be on the receiving end of care when your cognitive abilities are still intact enough for you to realize sort of that, you're reliant now and someone else is also really challenging. I think that's important to acknowledge, because caregiving is tough. But being the patient is also really tough, for those people who are aware that they are losing their abilities to do certain things and care for themselves. I don't see any questions in the chat or the Q&A. I'll sort of start our concluding remarks if I don't see anything pop up. But this was really great. I thank you so much, Adria, for joining me tonight. Just wealth of knowledge. Again, I think this was a good general sort of overview, because really, any one of these topics we could have talked about for an hour or more. Especially having, again, that personal experience, and then also the professional experience. So I really appreciate you coming on the podcast as a guest. Anything else you want to leave us with? [1:02:11] AT: No, I appreciate you having me here. I will also be at ASHA, so maybe I'll see you there. I'm presenting as well. I just encourage SLPs to get out there, and practice working with people with dementia. I know it can be uncomfortable sometimes, especially if you don't have a lot of experience. But your skills are very much needed. If you're someone who really has a passion for dementia care, go for it. We need more speech therapists who specialize in that, and that really have strong skills, and continue advocating. If you all want to contact me, you can contact me at [email protected] or you can find me at any social media platform, @BeLikeCare. [1:02:55] RG: Someone did ask the question. What was the Cleveland resource? [1:03:00] AT: The Cleveland Clinic Lou Ruvo Center for Brain Health. Lou Ruvo is L-O-U R-U-V-O. [1:03:10] RG: Then you said that's in Vegas? [1:03:12] AT: It's in Vegas, yes, and it's associated with the Cleveland Clinic. Someone said, is there a recommended resource article or text on the type and stage of dementia? Types of dementia, you can find descriptions pretty much anywhere, the Alzheimer's Association is a good resource there. Also, the Cleveland Clinic and National Institute of Health. But then, for the stages of dementia, I encourage you to look into the Global Deterioration Scale. That was created by Dr. Barry Reisberg in the eighties. That's predominantly what's used. You'll see occupational therapists use the Allen Cognitive Levels a lot of times. One is not better than the other, they just described dementia a little differently, and the progression. [1:03:55] RG: Again, just thank you so much for being here, and I hope to catch up with you in Boston, and look forward to seeing you. [1:04:00] AT: All right. [1:04:02] RG: Thank you. [END OF INTERVIEW] [1:04:09] ANNOUNCER: Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA Registry and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA. Please allow one to two months from the completion date for your CEUs to reflect on your ASHA transcripts. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks, again, for joining us. We hope to see you next time. Thanks for joining us at SLP Learning Series. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs. 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