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Advice From Your Advocates
Advice From Your Advocates
Dementia Behaviors Aren’t What You Think: Why Caregiver Approach Matters
When Kathi Miracle started caring for dementia patients at just 22 years old, she was hit, kicked—even suffered broken ribs. But instead of walking away, she leaned in, launching a lifelong mission to improve dementia care.
Now, with over 30 years of experience, Kathi shares eye-opening strategies that challenge common assumptions. Hosted by Elder Law Attorney Bob Mannor, this episode of Advice From Your Advocates uncovers:
- Why 80% of dementia-related “behaviors” are triggered by caregiver approach—not the disease
- How adjusting personal space, vocal tone, and visual cues can dramatically reduce outbursts
- Why knowing a person’s life story is essential to understanding their reactions
- How caregivers can build a support network without guilt
Whether you're a family caregiver or a professional, this conversation offers life-changing perspective and practical tools.
Bonus: Get a sneak peek of Kathi’s upcoming book, Your Ticket to Compassion, packed with QR-code tools for real-life dementia challenges.
Learn more about Kathi Miracle and Silver Tsunami here: https://www.mysilvertsunami.com/
Host: Attorney Bob Mannor
Executive Producer: Savannah Meksto
Assistant Producers: Samantha Noah, Shalene Gaul
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
You're listening to Advice from your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families. Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a nationally board certified elder law attorney and I have a particular concentration on helping families that have a loved one with dementia. As part of that, I'm really excited to bring to you a thought leader in the dementia area, which is Kathy Miracle. I love that name, kathy. Welcome.
Speaker 2:Thank you so much. I'm happy to be here.
Speaker 1:Kathy, tell us a little bit about yourself.
Speaker 2:I am a Colorado native and I have a double bachelor's degree in speech pathology audiology. Native and I have a double bachelor's degree in speech pathology audiology. And my master's degree is in gerontology, with an emphasis in dementia and elder abuse. I started my career in senior living back when I was 22 years old as a certified nursing assistant in a nursing home and I was assigned to an Alzheimer's unit I because there was no training back then about dementia. I was hit and kicked and punched and scratched and thrown into a wall. Ribs were broken.
Speaker 2:Um, I did it all wrong and so I committed to learning how to work with individuals with dementia and their families so that I could do it right and so that I could train my teams to do it right. So I've spent over 30 years in senior living. Um, I've been ranked at a high level as a dementia expert. I speak at conferences all over the United States. I consult nationally and internationally. I'm nationally approved as a legal subject matter expert, so I assist in legal cases, and I have a book launching this fall. The title of it is your Ticket to Compassion Navigating the Dementia Experience, which we're super proud of, and it will be a great handbook for family caregivers and professional caregivers on how to travel the dementia journey a lot easier.
Speaker 1:I'm excited to talk to you about your book, but we're going to put that off for a second here, and what I'd like to talk to you about first, right off the bat, is something that you and I have talked about previously. First, right off the bat is something that you and I have talked about previously. You had mentioned in your intro about being kind of bitten and hit and scratched and all of that. How do we deal with behaviors?
Speaker 2:So what I have learned over my years of experience is about 80% of the behaviors are triggered by the individual who is interacting with them. Only 20% are usually due to an actual dementia diagnosis.
Speaker 1:So that's really something worth repeating. So 80% is based on a trigger that the caregiver or someone else interacting with them initiated, and I believe that's true and I know that might come across to our listeners, as I hope you don't get defensive about that but you don't know that you're triggering them, and this is where Kathy's expertise is really helpful here. So I just wanted to emphasize that. So go further on that. As far as the 80% that is triggered by the activity of the other person, Sure, I mean.
Speaker 2:The first couple of things is I talk about approach, and oftentimes if somebody with dementia is approached from behind, we startle them and they will react. If we approach too fast, the person can become startled and then the individual reacts. The big thing that most people don't know whether it's a family caregiver or professional is that if I were to get in your personal space and we didn't know each other, you would back up, you know.
Speaker 2:I did it again, you might back up because we know to. You know it doesn't feel comfortable A person with dementia. Their personal space is actually six feet and when you get into their personal space without permission they just start defending it. And so I train staff on how to approach gently and from the right direction and so as to not trigger that. Another thing is communication. People tend to communicate too much or too fast and the person can't keep up and everybody gets frustrated and then the person with dementia will react. Our environment can trigger behaviors, whether it's overstimulating or understimulating. Even in an understimulating environment it can cause the individual to become grouchy or cranky and then they react when someone does start to interact with them and a medical need. Sometimes you know somebody may be on an over-the-counter pain med and what they need is a scheduled pain med, or they're on something every six hours and what they need is every four hours. And so anytime there's a medical need, like a urinary tract infection or they're in pain, they can react to the person who's interacting with them.
Speaker 1:One of the things I think you'd agree with is getting on the same level, like bending down or getting down on the same level so you're not hovering over somebody in a wheelchair or something like that.
Speaker 2:That's correct and I covered that information when we talk about approach is that you don't ever want to stand over somebody. It's very intimidating and people with dementia will react. So you're absolutely correct you want to be at eye level or just slightly below eye level when interacting with that individual.
Speaker 1:I'm always amazed by the brain, because I always tell people that the brain is always trying to figure out and solve problems, solve the situation that's in front of them, but if it doesn't have the data that some of us have, it's going to come up with a solution. It's going to come up with an answer, and some of the times it might be that the answer is this person is a threat to me based on their interactions, and so the brain's always trying to still solve problems, even if it doesn't remember.
Speaker 1:It has no short term memory, and so one of those things is the issue of the speed of speech, which I have trouble with because I tend to talk really fast, and so the issue is the brain processing especially with someone with Alzheimer's or dementia might be slower and it's uncomfortable sometimes for people to have that gap, that silence, silence, is uncomfortable for a lot of people, and so for someone to make a request or explain something and then not get a reaction right away, even 10 seconds seems like an eternity to allow the person to perceive or absorb the statement that had been previously made. But that's exactly what needs to be done. Is that slower reception of information and sometimes there's going to be silence. That might be awkward and you can't fill that silence because that's just going to be confusing.
Speaker 2:Correct. That's one of the things I train is one you have to be comfortable with silence, which, like you said, most people are not. I've even timed some of my own staff to say, let's see how long you can be quiet, and they last about 10 to 15 seconds, and that's about it. What I also, you know, inform people is that when we look at the cognitive skills that individuals have in the brain, auditory processing and auditory memory will pull down short-term memory if it's not strong. And so what I also tell is, for women specifically, that as men age, the decibel range that men start to lose their hearing is the same exact decibel range as women's voices, and so women tend to need to bring down their voice.
Speaker 2:I will often demonstrate like if you were a DJ on a radio.
Speaker 2:You know your voice becomes lower, and if you talk just slightly slower, the person can usually understand that decibel range and that rate of speech.
Speaker 2:And then you do have to make sure you're continuing to maintain eye contact with them, because some people learn how to lip read with dementia and that's what they rely on, because visual processing and visual memory stay intact longer in the brain through the dementia journey than auditory processing and auditory memory, and so by slowing down the rate of speech, by lowering your voice, by maintaining eye contact and then yes, by being quiet and waiting for the person to respond, helps with communication.
Speaker 2:What I also will say is what somebody reads and understands in the brain is completely different than what they hear and understand. So using common words like hungry or thirsty or tired, and, if you're going to go to that level, using pale yellow paper with gold black print, is easier on aging eyes, and I also encourage people to laminate those common words because you'll use them over and over. Or pictures also work very, very well with an individual, because they understand the picture a lot faster than they understand what's being said to them. So there's a lot of different communication techniques that I advise and guide on so that communication with this individual is easier for everybody involved.
Speaker 1:It's interesting what you said about the difference between men and women, and I'm curious if you have any thoughts about interacting with someone with dementia and how whether they're a man or a woman has an impact on it.
Speaker 2:I think it has more to do with just man versus women. It also has to do with where someone grew up, it has to do with what their profession was, it has to do with the type of dementia they may have and where they're at in their journey. There's a lot of varying factors that I take into account. What I find more often than not especially someone who has been, you know, come into a community is that they don't. The community doesn't do a great job at getting history on an individual. So you know, just like I said, I was in Kansas a couple of weeks ago doing training for the community. I was doing training for professional staff, but it's an area of Kansas where my dad grew up, so I'm very familiar with it.
Speaker 2:But farming if you were a farmer, most men have a higher hearing loss in their left ear than they do their right ear, because driving a tractor they didn't use ear protection and the engine was on the back left side of the tractor, so they have a higher hearing loss in the left ear.
Speaker 2:If it was somebody who grew up in a metropolitan area, then it's not going to be the same type of hearing loss for that individual, whether it's a man or a woman. Somebody was a CEO of a company versus a blue collar worker. Your communication with them and your interaction with them is going to be completely different, and so the history of an individual is just as important, and I like to know where they grew up. I like to know if they were in the military or not and what rank they were. I'd like to know even for women. I took care of a lady who was the first PhD in her family, and so interacting with her was a lot different than interacting with the woman who had had 10 children all at home. She had one boy and nine girls, and so our interaction was completely different, because of their education level or because of the lifestyle they chose to have, and so knowing all of that information absolutely helps to communicate better with an individual, and more efficiently as well.
Speaker 1:You know, that's really very interesting, and I 100 percent agree and agree and I feel like that is neglected that there is a certain amount of when someone has dementia, especially if they're going into a care setting whatever the care setting is, whether it's memory care or a nursing home or anything like that there is a tendency just to focus on, you know, their security and protection and making sure that they have less risk. The reality, though, is everybody is so different and people need different things, and actually realizing that just because somebody is diagnosed with dementia doesn't mean they're not a person anymore.
Speaker 1:And they have all of this that they've brought with them, their you know, their experience, their knowledge, their life. Just knowing those things, which I think is often neglected, can make a difference in how we're naturally going to treat somebody if we know that they've worked really hard on a farm for 40 years, or that they were career military, or that they were an academic.
Speaker 2:Absolutely, it's a huge difference. I mean, again, I've learned a lot through just mistakes I made or my team has made and I give the examples when I train that we were taking care of an individual who was very combative and very resistant to care with one of my staff and it just so happened I was in the building on a weekend when his son was there and the son asked me. He pointed out the staff person and said is that the person who my dad gets very irritable with? And I said yes, and she happened to be of Asian descent. And he said well, what you need to know is my dad was in Pearl Harbor. He was stationed in the Navy in Pearl Harbor when it was attacked and I thought, ok, well then, no wonder we can't get this individual to do anything with him at all. And so it's little things like that about people's history that make a huge difference today in how we care for them and how we interact with them and maintain a positive relationship with that individual.
Speaker 1:Just as an aside. I know that there's a lot of thought process about that. We have to, you know, work past our biases. This is not the time to work past biases. When somebody has dementia or Alzheimer's, this is not. You know, they could have worked past that before, but this is not the time to insert your political or trying to make a point of differences and things like that. At this point, there's not going to be a learning curve for someone that has Alzheimer's.
Speaker 2:No, and the more I always told families you know, the more I know, the better we can take care of them. You know things that happened to them growing up as a child, things how they were treated in the workforce. I mean, the more I know it, we were able to set up care in a much more specific and customized way for that individual and we avoided a lot of problems that I don't think other people avoid because they don't take the time to find out or they don't understand the importance of finding out that information and the numerous stories I could tell over the things that I've learned just simply by the importance of understanding the history of that individual.
Speaker 1:And I have a book coming out. I'm excited to read it your Ticket to Compassion for Families and Others in the Long-Term Care Profession. From what I've learned about your book, it's going to be very hands-on, useful, practical. So tell us about your book.
Speaker 2:So we are very excited to be launching the book this fall. The title of it is your Ticket to Compassion Navigating the Dementia Experience. It is being pre-sold now for a discounted price on our website. Mysilvertsunamicom is the website, but it is an entire book.
Speaker 2:I've often described the dementia journey as one walking into an unknown amusement park. Sometimes the ride is fun, some days the ride is scary, some days you get off the ride and you're nauseous or you're sick, and there are days you don't want to go on the ride at all, and so the entire book is themed around an amusement park, from communication tips to self-care for the caregiver, to eating habits, to just about anything you can think of in regards to the dementia experience and the dementia journey, and so it will be a practical guide for both professionals and family caregivers. We will be having QR codes throughout the book so someone could scan, and we will already have documents pre-done for people. They just have to print them and fill them out and they can create their own binder or their own electric file.
Speaker 2:But even as much as one of the fascinating things I came across is somebody needs to go to the emergency room the person the family caregiver, the professional caregiver doesn't get to ride with that individual. So, having a document you can hand an EMT or paramedic who can hand that to emergency personnel, just to understand how to interact with this person. And do they wear hearing aids? Do they need an assistive device? Do they wear dentures? What do they prefer to be called? I mean a very quick front and back page to help be able to interact with that individual much better and much calmer than what we see today.
Speaker 1:And this book would be helpful both for people that are in the industry that work with folks with dementia, but also for the family itself and learning strategies and trying to minimize some of the more difficult aspects of dementia.
Speaker 2:Yes, it would. I mean the focus is truly on the family caregiver. As many years as I spent in senior living, what I come to realize is that I do think that people could take care of people at home longer, which is filled with a better quality of life. Studies show that people live much longer, with better quality of life, living at home, in their own home environment, and so being able to help family caregivers understand the guidance needed to be able to care for that person as long as they can at home, I think helps everyone overall.
Speaker 1:Talk a little bit about the dynamic between a husband and a wife, because I know that this could be very challenging. You know if a couple's been married for 30, 40, you know if a couple's been married for 30, 40, 50 years and they've had their ups and downs and they've had they know each other's grumpiness and it's really easy to then start looking at some of the symptoms of dementia or Alzheimer's as just my spouse is being grumpy or they're just being obstinate or whatever. So talk about that dynamic and how to maybe help a spouse learn the new reality.
Speaker 2:That is a huge issue, I guess I could say, because I've seen everything from people being very on top of it and something's wrong. More often than not we ignore the symptoms. Families ignore it because they do. What I hear from families is I'll hear them say, well, you know, he or she is just asking repetitive questions to drive me crazy. I'm like, well, no, that's not what they're doing. They don't see some of the warning signs. Like you said, it's coming across as the person's intentionally being irritable or being cranky, when that is actually the prime time we need to hitting the individual with dementia.
Speaker 2:There's a lot of statistics out there that is unknown about that particular part of it. But the other part is the harder part, I think is the wedding vows. I've seen so many. I've had to redefine wedding vows so many times for individuals because they believe that, for better, for worse, in sickness and in health. I'm going to see this process through because it's what I committed to in front of God, family and friends X amount of years ago, and so oftentimes I'll say do you know? Nowhere in the Bible does it actually say that you have to do this alone, you know?
Speaker 2:you're honoring your wedding vows by bringing in a care team. You're still honoring your wedding vows by taking care of yourself. You know just as much as you're taking care of this person and so having to sit down and redefine individuals' wedding vows so that they understand that nowhere do they have to do this alone, and the importance of getting legal paperwork in order, financial medical paperwork in order and reaching out to the necessary network and care team to help them have the support they need to navigate this journey.
Speaker 1:Yeah, very, very good. So when you know a family is dealing with this and it doesn't feel like they seem to be in a little bit of denial or ignoring the symptoms we had another guest that talked about that many families tend to cocoon and what that means is they stop interacting with the outside world, they don't accept help from the outside, they're somewhat embarrassed about the situation. So they just stay in their house and never leave and really try to hide the situation, and I've seen that from time and time again. Talk a little bit about that, about how negative that can be and the resources that are out there to help families.
Speaker 2:I've listened to families talk about cocooning. It's termed a lot of different ways, but that's a great way to term it. But what they do, part of what they do is they convince themselves they're protecting the individual, you know this individual can't keep up in conversations, or or it's a dignity issue or it's a respect issue.
Speaker 2:And if I can work with a family or an individual earlier on in their dementia diagnosis, when they're newly diagnosed or there's concerns about it, socialization is one of the key factors that helps in delaying the progression of dementia or in reversing cognitive decline.
Speaker 2:So socialization is actually an important factor. So to do the opposite, I mean, I think we as human beings try to do what we think is the right thing for somebody and in hindsight it becomes the one thing that they shouldn't have done. But you know, we do the best we can with the information that we have. And so cocooning there's all kinds of things that can happen. The person may not be getting the nutrition, the caregiver is burning out and they're not getting hydrated, they're not being stimulated cognitively through socialization. The home environment can become its own concern, with area rugs or leaving a coffee pot on or someone turning on a stove and a fire starts. I mean, even having understanding what a dementia-friendly environment looks like would be helpful. So cocooning can be problematic on so many levels, not just for the person with dementia but also for the caregiver, because the caregiver is not getting the support or the interaction he or she needs in order to stay strong to care for this person throughout the dementia journey.
Speaker 1:Kathy, I know that you've mentioned that you're a national speaker and among other things, but you also do some coaching one-on-one. So talk to us about the coaching and who might be interested in your coaching.
Speaker 2:So it depends on who calls me, but I do coaching with professionals at all levels, from frontline staff to charge nurses to executive directors, administrators on how to transition someone into a senior living community more successfully, how to not trigger behaviors, how to care for those individuals, how to help families learn, how to continue to connect with someone up until someone takes the final breath.
Speaker 2:From a family caregiver standpoint, I can go in and I can do a survey of their home environment and talk about this is what's working well in your home environment. This is something you would need to consider, or this might be more helpful in your environment for a person with dementia. I can help families better understand how to build a network, take care of the things like legal decisions, financial decisions, medical decisions and who they need to get involved in that network to get through those things. Talking about self-care, I cannot emphasize enough about self-care for the individual who's caring for someone with dementia and, if caught early enough, I have done a handful of coaching and guiding with the person who was diagnosed with dementia to be able to delay the progression of dementia. In some circumstances we've been able to reverse cognitive decline for that individual and it gives them a much better quality of life. So we customize our coaching based on the person who's calling in for help.
Speaker 1:I think that's the key here, for everything that we've talked about is treating the individual as an individual, understanding their background, understanding their life, and customizing our decision-making based on that, which is kind of the opposite of what the industry tends to do, which is to group everybody together and so when they have activities, everybody goes to the same music session or the same exercise session, same bingo. You know, music session or the same exercise session, same bingo, whatever it is, and the idea is that we'll have a lot less behaviors, we'll have a lot less sundowners, things like that, if we treat into you know, everybody as an individual rather than trying to herd them into everybody. Do bingo at 10am.
Speaker 2:Absolutely. That's absolutely correct, and it all starts with the information that is collected and gained through however somebody wants to term that, the discovery process or the admission process. I found that the more I have a solid understanding of the individual where they grew up, what type of family did they grow up in? All boys, all girls? Were they in the military? Were they not in the military? What rank? What did they do in their career path? You know how they raise their children. All of that information collected lends to how we ultimately provide care for that individual, and so I very much tried to customize every single person who came in the front door, because you'll hear the phrase when you've met one person with dementia, you have met one person with dementia. So we know that phrase, but yet the industry as a whole doesn't follow through and treat each person as an individual. They lump everybody together, which actually can be more problematic in the care that they provide.
Speaker 1:So, Kathy, this has been a fascinating conversation. Kathy Miracle, she has a book coming out, your Ticket to Compassion. You can preorder it on mysilversunamicom. Any thoughts that you want to leave our listeners with?
Speaker 2:I think you know. What I would just say is that I've never seen this be an easy journey for anyone not the professional caregiver, not the family caregiver. I oftentimes see families. They still try to compare that person to who they were 5, 10, 15, or 20 years ago. And as a professional, you know we get to love, honor and respect who that person is today. And so truly for family caregivers being able to, on some level, let go of the past and enter into their world, because they no longer are going to be capable in living in our world. And so, and be kind to yourself. You know, as a family caregiver, give yourself some grace. You're doing the best you can, but, most importantly, make sure that you're taking care of yourself, because you won't be here to take care of the person who needs you if you don't take the time to take care of yourself.
Speaker 1:Very important information here today. I appreciate you, kathy, and all the work that you do. If you've enjoyed this podcast, don't forget to subscribe to Advice From your Advocates. You can find us on anywhere that you listen to podcasts. We're also on YouTube or you can find us on our website, manorlawgroupcom. So thanks for joining us today. So thanks for joining us today.
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