Demystifying Alzheimer's Care (Episode 13)

February 20, 2018

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Darcy Grabenstein: Hello from SmartLinx Solutions! In today's podcast, we'll talk about Alzheimer's care. My guest today is Kerry Mills, who has earned recognition in the field. In 2011, she founded Engaging Alzheimer's LLC, which trains healthcare professionals, coaches families, and advocates for the cognitive impaired. Kerry has appeared on PBS's The News Hour, CBS television, and is a frequent speaker at Leading Age conferences. She's the author of two books on the topic and a training manual for personnel attending to the needs of people with Alzheimer's. Welcome, Kerry.

Kerry Mills: Thank you. Glad to be here.

DG: Can you tell us a little bit about the training your company offers for healthcare professionals?

KM: Oh, sure, yeah. There's a classroom component as well as a coaching follow up, and so the classroom piece itself is actually a 14-hour training usually split between two days. Yeah. It actually starts with what's not dementia because dementia has such a bad reputation. For instance, if we know that somebody does in fact have dementia and all of a sudden they fall, or they're not eating well, or they sleep poorly, it's normal practice that they'll say, "Oh, yeah, that happens with dementia" when the reality is they could have a UTI. They could've fractured their hip. They could have just been having a stomachache today. Normal in common aging is really talking about the difference that — the things that happen as people age, what's normal, what's common, so that we can manage any of the symptoms that somebody might be having related to things that are not dementia so that we're really then only dealing with the baseline of the disease.

That's how it starts, and then we talk about the brain. How is it supposed to work? What happens when it's broken? From there, we talk about best practices in communication with a serious emphasis on listening. In all of our relationships in life, if they're going well, we do a good job listening, and people respond when people listen. If we're not listening to what they're saying, whether it be verbally what they're saying or based on their behavior, then we're missing half of our communication, and so no wonder we run into so many problems. From there we go to day versus the task, helping staff to take on a more engaging role and breaking this down in a way that is conducive to the way that staff might work. Then, from there, there's also just a piece about how we bring people to actually engage in doing activities, and we can talk more about that later.

That's an eye-opening segment, which is fun, and then we focus on managing the challenges. Why do they happen? Half the time it's our fault. Half the time we didn't even realize that we did something, being willing to take ownership. What are the trigger things that we say that might actually cause some of these behaviors? Things like that. Then we finish up with teamwork because nobody can do this job alone. If you're trying to and you're succeeding, I'm scared. If you're failing, I understand why so a real emphasis on being able to work together and to focus on each individual's role on the team. In the same way we can't change people with dementia, we can't change the people we work with.

DG: Wow. OK. You cover a lot.

KM: Yeah. Yeah.

KM: It's a full 14 days.

DG: Yeah. I want to start with the basics. Alzheimer's and dementia, they're often used interchangeably, but they are different conditions. Could you just give us a brief explanation of the two? Does patient care vary as well for the two or different — you even mentioned some different variations?

KM: Sure. Yeah. It is true. They do get used interchangeably, in large part because Alzheimer's disease is the most common. It's the most recognized. It's actually the disease that we know the most about. For that reason, when we switched over from calling it hardening of the arteries and senile dementia, it just became Alzheimer's when the truth is Alzheimer's is a physical, tangible disease that causes somebody's brain to actually deteriorate.

Dementia, all that is, is the symptom. It's just the thing that tells us something's not right. If I woke up this morning and I had a fever, and I was all concerned about what it was, and I went to the doctor. He ran a whole bunch of tests and said, "I'm sorry, Kerry, but you have a fever." It would be totally unhelpful. I already knew that.

When we say that people have dementia, what we're doing is we're saying they have cognitive impairment. We're recognizing they're forgetful. We're recognizing they get confused. We're recognizing that they're eating too much or too little, or they don't recall doing that, or they're getting people and places and things mixed up. It's identifying the behavior that we see whereas Alzheimer's disease is one disease, again, the most common, and it takes a fairly common trajectory. Obviously, it's going to look different on everybody because everybody's life has been different and who they are as people are different, but there's a similar pattern to the disease process.

Then there's other diseases that cause people to have dementia so vascular dementia. Vascular dementia is actually one of my favorite diseases to work with. That's what happens when people have mini-strokes. Part of what's fun about it is that you can have people see their cardiologist and really do what you can to try to minimize them having any more mini-strokes. The less mini-strokes they're having, the less decline you're going to see. There will only be decline when they have mini-strokes, unlike Alzheimer's disease which by nature is a progressing disease.

Those guys do really well with a lot of set routine. They thrive in that kind of environment. These are the people who probably moved into the nursing home, and they moved in with some dementia. You've seen them stabilize over time, and some days, they might just freak out about something. You're like, "Where in the world did that come from? That's so not like them." Other days, they seem to do really, really well. It's because there's a lot of structure and routine that they are able to do so well in that environment.

Then there's frontotemporal dementia, which is oftentimes what we see with younger people. People who've had some sort of head trauma different than traumatic brain injury but maybe repeated blows to the head by way of sports. If they had a fall or something as a young person, oftentimes — like a major fall. That can end up leading to frontotemporal dementia when they get a little older. Yeah. Their behavior also looks different. They tend to be impulsive.

A lot of times they can have real trouble with word finding, but it doesn't mean that they don't understand us. We have the term aphasia which means that they're not able to verbally communicate things, which is really different than receptive aphasia. Meaning that they understand what we're talking about. The danger there is that a lot of times people will treat them as though they're not understanding things, and so they may not tell them what they're doing. They may not even engage with them, thinking that the person's out of it when, in reality, they're not, and so then that can by itself cause behaviors.

DG: Oh, sure. That would be frustrating.

KM: Completely, right? Those are just some of the other more common diseases that happen that can cause people to have dementia. Yeah. Lewy bodies is the other really — the much more common one that we're seeing more and more of. If you think of Robin Williams, he committed suicide. We all thought it was because he had depression, but his wife came out after and said that he had Lewy bodies. He would wake up in the middle of the night and say, "I'm having dreams, but I don't know which are dreams or which are real." There's just a real lack of being able to hang onto reality, which can be troubling at times. They can also have really odd hallucinations, but it might not actually bother them as much as it bothers us.

Of course, there's much more to be said about each of these. As you can see, there are different diseases, and they do look a little bit different. In which case, to answer your second question, yes, it would impact — it can impact our plan of care. Obviously, we want to meet everybody where they're at, and we're, in a sense, dealing with on the behavior management side.

When you expect that dementia is just a memory disorder, that's not a true statement because people with Lewy bodies actually remember way more than you think. When you say to them — they want their wife every five minutes, and you keep saying, "Oh, she called. She's at work. She called. She's at work. She called. She's at work." Then finally somebody says, "You've told me that all day." We the staff get shocked. "How did you remember that?" Maybe they don't have a disease process that actually affects their short-term memory as much as it would if it were Alzheimer's.

DG: Got it. I would assume and others probably would — as well that staff working in a memory care wing or a ward — would have specific training in this area. I know we've talked about this previously, you and I. This isn't always the case is it, and, if so, how would you approach training in that case?

KM: Yeah. You're right. Again, the people who are listening to this can probably answer it for their own better than I can. I often will start training by doing a small poll of how many years have staff spent working in this field, and how much time have they spent working with dementia. Usually, the hands are high for 5 years, 10 years, 15 years. Then I'll ask them, "Have you gotten an hour of training a year?" Most hands will stay up because I think it's a recommended in-service in most states. Then when I say, "How many have been to an all-day training for dementia?" most hands go down. Then when we talk about why are people with dementia the hardest people in the building to work with, it's still hard because they haven't been given the tools to do it. In the same way that the nursing home wouldn't ask the staff to weigh people without showing them how to use the scale, or they wouldn't ask them to take blood pressure on residents without making sure that they know how to use a cup, we then throw them into the midst of oftentimes 40 people who have dementia, and we then don't give them the tools to be able to do it.

From a training perspective, it is true that oftentime that is greatly, greatly lax. Yes. That can absolutely lead to burnout because staff end up doing things that agitate the residents, which cause the residents to be agitated, which can cause behaviors, which can cause residents to strike out, especially during care and things of that nature. It can cause staff to want to try to make people who have dementia eat, or make them walk, or make them sit. The truth is, again, you can't make people do things, so this ends up leading to a very frustrating job. You'll often hear staff say, "Oh, yeah, you have to have the heart to do it." That's true. You can also teach people, which will help create hearts that want to do it. Yeah. To answer your question, it can be a hard environment if you don't have the tools.

DG: Not only dealing with the residents themselves but dealing with distraught or frustrated family members. I'm sure that could be as challenging as well. How do you train staff to handle various situations involving the family?

KM: Yeah. You're right. Actually, it's always like an inside joke. Not really. I mean, it's like, in training, we're behind closed doors, and so I always say it's OK to say that there are some families that drive you crazy. It's totally acceptable, right? I mean, I will be that family member. I have no doubt about it, right?

Again, part of the teaching has to be for the staff to be modeling the right behavior, and so a lot of times, with some of the stuff we talk about in training — and an easy "for instance" is family members are famous for walking up to their parent and saying, "Mom, do you know who I am?" or "Mom, Dad, do you know what my name is?" Those are parts of the brain that are very impaired at this point. If the parent can't respond with the correct answer, the daughter or the son, before you know it, they're crying and calling their sibling: "Mom doesn't know who I am! Dad forgot who I am!" We've been told that people with dementia are going to forget who their families are, and so then they figure, well, it's a self-fulfilling prophecy. Here it's happening.

The truth is that people with dementia — any of these, by way of any of these disease processes — most of the time do not forget who their family members are. The evidence is their daughter walks into the room, and they light up, right, or they smile, or they take the person's hand, or they make contact, and they might not otherwise. The evidence is that there is a closeness, and there's a relationship. It's just not based on words. It can't be defined by words by the person with dementia. In training, when we talk about how we shouldn't be saying to people who have dementia — when the staff come in, they shouldn't say, "Oh, did you have lunch today?" The reality is the person with dementia is going to say "No." Then the staff member is going to be in this predicament of, Great, do I ignore her, or do I go get her food? Maybe she doesn't need food as opposed to the staff member walking in and saying, "Oh, hi, Mrs. Jones, so glad to see you. Did you enjoy your lunch today, right?" It's opening up a conversation, giving the person the information rather than asking them yes, no, so that same principle applies to families who come and say, "Do you know who I am? "

What we do in training, we actually teach the staff how to model that behavior for the family member. For instance, then, daughter comes in and says, "Mom, do you know who I am?" Staff member over here walks over and says, "Mrs. Smith, can you believe your daughter, Sally? She's here from California. She couldn't wait to get here. I heard her talking about it all last week." Now, Mrs. Smith lights up, and it's all of a sudden like, Oh, wow. She's here for me. She didn't remember all of that story, but by the staff member giving that information to the resident, the resident responds the way they naturally would if they knew the information.

Then the family member sees it, and they're like, Oh, wow. They don't go down that dark road of Mom doesn't know who I am, blah, blah, blah, blah, blah. It would be awkward for a staff member just to say to a family member, "Don't do this. Do that." That would go wrong, and people would get written up, and families would be a little more — they would be unhappy. That's not the answer. When family members see, gee, that staff member does a really great job with my mom, they begin to watch them more, which eventually opens up an opportunity for the staff to be able to say, "Yeah, this is — I was taught that this is the right way to do it because this is what benefits your mom the most." Then it's up to the family member what they do with it.

I mean, we once had a family member who actually renewed his wedding vows because he said, "I learned how to love my wife watching you guys." They'd been married 17 years. Yeah. I mean, it was insane. Now, that's not every story, but there are so many family members who will come back and say, "The staff are just so great with her. I'm learning how to do things" or "The staff have told me they don't do this, or they do that. Now, I'm learning to do or not do those things because I see that it makes my mom happier."

Yeah. The other thing with families is that we teach the staff you've got to communicate. You've got to communicate. If you know that, when Priscilla comes in, Priscilla is nuts about her mom and the way her mom looks, right? You see Priscilla walk through the door, and you know this morning that her mom took initiative and got herself dressed, right? You also notice, gee, she was wearing mismatched socks. Rather than the staff rush to go get her changed for the sake of Priscilla, which might create behaviors in the mom, is to say — for the staff to go up to Priscilla the minute she walks through the door and say, "Hey, just want to let you know something really cool that happened this morning. It's not normal. Your mom doesn't normally do this, but this morning she actually took initiative, and she got herself dressed. She doesn't look like she normally does, but because she did it herself, we didn't want to get in the way." That way, when the daughter sees her mom, whether she's upset or not about how her mom's dressed, at least she's understanding the story behind it and why the staff did it rather than just assuming that nobody noticed it.

DG: Right. Good point.

KM: Thanks.

DG: Alzheimer's is definitely not a laughing matter, but I think there's a place for humor. Would you agree? How do you incorporate humor when you're training healthcare professionals to deal with these patients?

KM: Yeah. I think part of it is — if you went to the doctor and you were in the doctor's office, and he said, "I'm really sorry; you have Alzheimer's disease," it's probably not the time you're going to crack up, right? The truth is it's a livable disease. It's a chronic condition. Yes, in the end, it's terminal. Oftentimes, it's 10 or 15 years from now, so 10 or 15 years, that's a fifth of a lifetime for some people. Part of it is just helping people to understand that we're going to live with this. We're not acting every day like we're going to die, so we're going to live with this. That's where the humor comes in. I mean, the things people with dementia have personally said to me.

DG: I can't imagine.

KM: It's too funny. I have family members all the time that freak out at the thought of moving their parent to a dementia care unit. Then after they're there for a few weeks, at support groups, they'll be talking: "Yeah. I can't believe what so-and-so said." "I know. I heard her say something like that. They're so funny."

Part of it is just embracing them. This is everyday life. Let it be a light matter rather than this daunting thing. For the person with dementia, they're not aware what the situation is on a daily basis. I understand that the families are going to have hard moments in comparison. Again, it's like look at what you do still have today so that you're not focusing on what's gone.

I mean, one of the funniest stories, I can still laugh thinking about it, is I had a client, and he used to go to the gym. The family was so worried. They didn't want anybody to know that he had dementia, and I was trying to make the argument that people might be picking up on this. It's getting a little more obvious, but anyway, no, we didn't want anyone to know, don't want anyone to know. I said, all right, I'm going to call his gym and ask anonymously. What do we do if somebody hypothetically has dementia? Anyway, I make the call, and I speak with one of the people. It was a small gym, a local gym. The man who answered the phone said, "Oh, are you talking about Mr. So-and-So?" I said, "Oh, my goodness." What do I say?

Anyway, fast forward, they got him a personal trainer who would work with him, and keep an eye on him throughout his time at the gym. One day the personal trainer walks up to this man. He's on the bike, and he's been sitting there for a long time. They thought maybe he's watching TV, but time was passing. They walk over. He had fallen asleep.

DG: Oh, no.

KM: I mean, I can't make that stuff up. You know what I'm saying? Then when we would talk about it with him, he himself would crack up laughing because who falls asleep at the gym? So yeah, I mean, between what they say, the things that they do, and again, just letting things be lighthearted. Not taking life so seriously. There are stressful points in it, but by and large, this doesn't have to be the most stressful thing that somebody ever lived through. Allowing things to be lighthearted, allowing humor, looking for things to laugh about, looking for the positive side of things will just actually make this journey a whole lot more bearable. If you're only seeing the bad stuff and you can never let go, then you're going to be miserable for the entire time. I mean, it's a choice, right? It's a choice how you want to live it.

DG: Look at the silver lining, I guess. There's got to be one in every situation.

KM: Yeah.

DG: I have one more question for you, Kerry.

KM: Sure. Sure.

DG: Could you give me an example of how your training's made a difference in the lives of both the caregiver and a patient or a resident? I think you had given me one about a local hospital when we were talking prior to our call. That really stuck with me. Could you share that with our listeners?

KM: Oh, sure. Yeah. At our local hospital, we implemented full training for one specific unit. They had not had any kind of dementia training in the past. All of the nurses, they were fairly experienced nurses, and they were just saying how their unit is always the hardest. It was a med-surg unit, which people recently had some sort of surgery or unknown, and that's where a lot of the older adults went. After training, I would go, and I would follow up each month with the staff just to talk with them about their patients. If they had patient that day that had dementia, I would go. I would model behavior for them. We would talk together about how can we help this person to be calmer, things that we could do not medication related but, again, behavior management?

After going for a number of months, I walked onto the floor one day. The same practice that I would always start with it is how's everybody doing? Patients who have dementia, I'm happy to go visit them. One of the nurses said, "We don't really have dementia here anymore." I was like, "What? What are you talking about?" She said, "Yeah, we just don't really have it anymore."

In conversation, what I learned was that the staff — because they were now implementing best practices. They were seeing so many of those, quote/unquote, "dementia bad behaviors." They weren't seeing them anymore. So much so that one of them would say, "We don't really have dementia." They had everything they always had. It was one of the nurses who actually said — she said, "I feel so much more confident being able to care for my patient." She said, "I used to dread those conversations with families." She said, "Now, I can't wait to be able to talk with them." She said, "I have to request less medical restraints. I request less physical restraints for my patients," she said, "because now we know what to do with them."

Yeah. That's just an hour of coaching a month or a couple of hours of coaching a month. That's not a lot after that full training, so that's how it ends up impacting both. That's where it all comes together is that the patients benefit, the residents benefit because the staff know what to do with them. There was actually once — one of the big things that happens as far as people with dementia is that a lot of times people think it's normal that their nights and days get mixed up, and the truth is it's not normal. It happens because people start to sleep late. They start to doze off. Whoever works with them during the day is totally OK with it if they get a break. Before you know it, the person is starting to be awake at night, and everybody says it's the disease. It can happen with the disease because that part of the brain does break down, but it can also very much be avoided or definitely minimized.

We had one nurse at this one particular nursing home. I mean, one of the residents, she had actually been an overnight nurse, so this was not disease related the fact that she would be up at night. This was her life pattern. Her body's clock had learned to be awake at night, right? She wasn't somebody we were going to get on to the day schedule, and so I worked really hard with the staff. They were so incredible. It was the overnight staff. She would walk and knock on everyone's doors, and go check on all of her "patients." She would be waking up 40 people with dementia. You don't want them all awake at night.

What they would do, they tried food. They tried medicine. They tried all these things, but nothing was really working because she was — again, she was used to being awake. The nurse would go to her on the overnight. She would say, "You know what? I'm totally swamped with my paperwork. Could you help me get caught up?" They would actually take her to a small day room. They ended up having to get a recliner. She would also get horrible edema because she wouldn't sleep at night, and she'd be up awake during the day.

The nurse would set her up with all this paperwork. They'd give her some milk. They'd give her some graham crackers, and then slowly, without her even realizing it — they would have the TV on. They would have the volume off, and they would begin dimming the light. Then when she would doze off around 1 o'clock, 2 o'clock in the morning, they would be able to just pull the recliner, so her feet would go up. Then she would sleep until 8 o'clock in the morning, right, but prior to that, when they would try to wake her up when she fell asleep, she'd get awake. Then she would stay awake for the rest of the day.

DG: That happens to me. Yes.

KM: I know, right, exactly. Yeah. Again, I think it's normal. Those are just some of the examples that — I always say that good dementia care is not a way of doing things. It's a way of thinking. If people can think right, they understand what's going on in the brain of the person with dementia. Then they can combat any situation they're up against. I can teach you — I can give you examples of things I would do for a thousand situations, and tomorrow you'll walk in to 1,001. Something we didn't cover. If you know how to think, then you begin to really have success. Those are just some examples from a staff perspective and then also how it greatly impacts actual people with dementia.

DG: Those are great examples. Thank you, Kerry, so much. It's obvious that you love what you do. It's contagious, your enthusiasm. To all our listeners, thank you for tuning in today. For more information on Engaging Alzheimer's and its services, visit, and if you'd like to learn more about SmartLinx Solutions and our fully-integrated suite of Workforce Management Solutions, visit us online at

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