Agitation and Alzheimer’s: Strategies for Managing Behavioral and Psychological Symptoms of Dementia

Headshot of Helen Kales
Helen Kales, MD

Many people living with dementia experience behavioral symptoms alongside changes in their cognition. What can care partners and healthcare providers do to manage these behavioral changes? After leading the Wisconsin Alzheimer’s Disease Research Center’s (ADRC) annual Dr. Daniel I. Kaufer Lecture, Dr. Helen Kales joins the podcast to discuss agitation and other behavioral symptoms of dementia, the use of medications to manage these symptoms, and different caregiving approaches for addressing these behavioral changes in people living with dementia.

Guest: Helen Kales, MD, geriatric psychiatrist, Joe P. Tupin Endowed Professor of Psychiatry, Chair, Department of Psychiatry and Behavioral Sciences, University of California, Davis

Show Notes

Watch the recording of Dr. Kales’ lecture, "Agitation is not a disease: How can we better manage the behavioral and psychological symptoms of dementia?,” on YouTube.

Learn more about the DICE approach, discussed at 21:01, on The DICE Approach website.

Learn more about the annual Dr. Daniel I. Kaufer Lecture on our website.

Learn more about Dr. Kales at her bio on the University of California, Davis website.

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Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today, I'm joined by Dr. Helen Kales. Dr. Kales is a fellowship-trained, board-certified geriatric psychiatrist and serves as chair of psychiatry and behavioral sciences at the University of California, Davis. She is founding director of the University of Michigan's Program for Positive Aging, which moved to UC Davis with her transition there in 2019. She's a recognized expert in outcomes related to later life depression, the risk of the use of antipsychotic and other psychotropic medications in older adults, and in researching ways to improve dementia care. In June of 2023, Dr. Kales gave a keynote address for the Wisconsin Alzheimer's Disease Research Center's annual Dr. Daniel I. Kaufer lecture for dementia researchers and care specialists. She joins the podcast today to discuss her talk titled, “Agitation is Not a Disease: How Can We Better Manage Behavioral and Psychological Symptoms of Dementia?” I love that title, Dr. Kales, and welcome to Dementia Matters.

Dr. Helen Kales: Thank you so much, Nate. It's really an honor to be here.

Chin: What prevents people living with dementia and their families from, “living well”?

Kales: So Nate, thank you for starting with that premise. I think when I started out in the field, we really didn't think in terms of living well. People got a diagnosis of dementia and kind of retreated from public and family life, and now we really think that We want to maximize people's ability to live well after diagnosis with their families. So we think about three different big problems that get in the way of living well. The first of those is that, it is very difficult currently in our country to get the resources that people with dementia need and their families exactly when they need them. That resources may be there, but they're not linked well and that people have trouble accessing. The second big problem is that our current dementia care as practiced in the real world is neither very personalized nor precise. We have a one-size-fits-all approach that emphasizes medications and not much else in the biopsychosocial model, so would really love to see that change, and then the third big problem linked to that is that, we currently lack training for our caregivers, but also our providers from the frontline to the physician on how to use non-pharmacologic strategies to help manage the behavioral symptoms of dementia. So those really are the three big problems that we face.

Chin: You mentioned that resources are not accessible for people living with dementia and their families, or at least not when they need them. What resources are needed and why aren't they accessible?

Kales: Let's think about what happens when somebody gets a diagnosis. Often, depending on where you are, that could be as little as some information, you know, the name of what type of dementia it is, and maybe a prescription or some type of medication for cognitive symptoms, and then a return visit in six months or a year, so there's a lot that is left to fate there, and if we think about dementia, it's more than a medical illness. We know that there's a lot of spheres that it impacts. We have legal issues. We have competency issues, financial issues. How is the person going to function in the family? What's going to happen socially with the family? So just many types of things that maybe physicians aren't always equipped or trained to deal with, and a lot of times our specialists, like you and me, are really located and concentrated in cities and urban areas and academic centers, so if people live in an area that isn't near an academic center, they may not get the best information from a well-trained source. So, if we think about other resources outside of physicians, there of course are agencies like the Area Agency on Aging or the Alzheimer's Association. Those can be great resources and people don't always know the extent to which resources are available. So again, what we hear regularly from caregivers is, I got this diagnosis and I didn't get a lot of information. I didn't know my dad might hallucinate, or I didn't know my mom was going to get agitated or wander. So when we think about how important behavior is to function and the day-to-day management of dementia, people simply don't have the information they need right when they need it.

Chin: That's such a frustrating part because the information is there. It's just not accessible at the right time, and it's not given at the right time, perhaps. As a clinician, I'm wondering, when should providers share what things could look like down the road? So someone is diagnosed with a mild form, a mild stage of dementia, and they're doing quite well and things are going wonderfully. They have some symptoms, they have some changes, but the provider knows that in the future there will be enough change that a person might start having some behaviors or personality changes, and I can see a provider being hesitant to share that information because it isn't something that's happy. So I'm wondering what you would recommend to listeners who are clinicians. you know, when is it appropriate to talk about the future? Do you recommend up front or is it a matter of sensing what the family is needing at the moment?

Kales: I think it's a combination of those things, and I always think about that Maya Angelou quote, that “it's how you make people feel that they'll walk away with.” I think, you know, in that way, it's how you present the information and the way in which you present it, and I think one of the things we always want to give people is hope. What I try to do when I present a diagnosis of dementia is a lot of hope transfer, meaning that this is not something that has to go a certain way. There are things that we know, for example, that behavioral changes can accompany the cognitive changes, and I think it's important for people to have that information. We wouldn't give a diagnosis of dementia and not present the cognitive changes. That is a part and parcel and really defines the illness, and I would argue that the behavioral changes are really ubiquitous, found in studies up to 98% of people at some point in the course of dementia have some significant behavioral symptoms, so they're really there and present in the day to day and affect every outcome you can think of. So I think we're remiss when we don't allow that these behavioral changes can occur. But that said, I don't think it has to be a doom and gloom. You will have hallucinations and this will happen. I think it can be presented in a way that if we are vigilant, and if we are mindful of triggers and some of the early signs of concern, that a lot of the more severe issues and behaviors can actually be mitigated and managed, that prevention is possible. So that's the kind of hopeful message that I would want to give.

Chin: In your presentation, you stated that dementia care is neither personalized or precise. What do you mean by that? And what are the barriers to personalized precision care?

Kales: Right. So we talk a lot about this in medicine now, and we like to think that we're very science and evidence based. But unfortunately, dementia care does not tend to be that way. I like to give the example of if somebody had the symptom of shortness of breath, and this was presented to a physician, the physician would never in a knee-jerk way sort of say, oh, well, that means you have pneumonia and I'm going to prescribe an antibiotic. That would be a huge leap in assumption and would be sort of the worst one-size-fits-all, and I wouldn't even call it medicine. I will say that unfortunately we do that with dementia and we do it in particular with the syndrome of agitation where agitation can mean really any of a hundred things. It basically means some type of behavior that is occurring that is unacceptable as defined by somebody in some way. So we really need to know more about, just as we would with shortness of breath, well, what's going on with this person? Is this something new? How long has it been occurring? When is it happening? What does it look like? What is the family's response? And just as with shortness of breath, that additional information is going to provide us a lot of context. If agitation is occurring because of pain, we want to treat that pain. We want to mitigate that pain in our minds. We would never say consciously, “let's just make them really sleepy so that we don't hear about it.” And yet that is kind of what happens hundreds and thousands of times every day in this country with people with dementia, because we hear the word agitation and without investigating whether there is pain or infection or there's a mismatch of caregiver expectations, we go ahead and prescribe a sedating drug so that we don't hear about that agitation anymore. That's not really, it's not science-based, it's not evidence-based, it's not personalized, and it's not precise.

Chin: Yeah, you're not really mincing your words here, Helen. I appreciate it, and I like it. I just think for some of our listeners who, you know, you use the word agitation, but can we take a step back and can you explain to us, you know, what exactly is BPSD or behavioral and psychological symptoms of dementia? You've alluded to at least some of the causes of agitation, but why do people experience BPSD? And then certainly, you know, why medications are not the silver bullet or even the first line of defense in treating BPSD?

Kales: Yeah, great, great question, and no, I'm not mincing my words because this is very personal. You know, I have a loved one who is currently receiving care. So I think each of us probably has someone in their lives who's been touched by dementia. It has become, not only a professional issue for me, but, but a personal one. So your question about what is at the basis of behavioral and psychological symptoms of dementia, which we, as you said, abbreviate to BPSD. The basis is that with any type of dementia, and there are many different types, as you know, at the basis of this are changes in the brain. For some of the symptoms that we see with dementia, apathy is a very good one. There are really direct links between the changes that occur in the brain and certain brain circuits and resulting apathy. People have studied this, they've done some pretty complex neuroimaging, and they've been able to actually localize some of the brain circuitry that's involved. However, with the vast majority of other symptoms. What we see with dementia is thought to be more of a decreased threshold for expressing behavior. So all of us have had the experience, for example, that we're at work, somebody makes us angry, but there's something in our brain that prevents us from really yelling at the person or throwing things or, you know, stalking out of the room. But that's because we have intact brains that we have certain inhibitory mechanisms that sort of suppress those urges, and what we think in dementia is that, that gating is removed. So there are different types of triggers that can at lower levels become expressed in behavioral changes. Things like aggression or wandering or striking out or fear or even things like repetitive questioning, and you know behaviors that we don't think of as typically medication targets occur quite commonly. So If you think about all of that, those triggers are actually the good news, and I love good news because I am an optimist, is that we can actually modify a lot of those triggers and we've shown that in our work, that if we work with caregivers and we train them to spot those triggers and modify them, that we can actually reduce the behaviors as well as reduce the distress that caregivers experience when those behaviors occur, so I think the message overall, again, is quite hopeful.

Chin: And then let's, I don't want you to have to talk to a specific medication, but the whole class of what we would call anti-psychotics, it is commonly used in practice to quote, “manage BPSD”. What do they actually do? You kind of alluded to this when you said sedate, you know, what is their function when people are using them? Do you see any place for them in the toolbox of a clinician?

Kales: Yeah, absolutely. Thank you for that nuanced question. So I think when I think about medications in dementia or behavioral symptoms, I think of it in two ways. One is treatment, and two is safety. That's what I see as the place of medication. Let's think about treatment first. If somebody is depressed, they should probably be treated with an antidepressant. If somebody has psychosis and that psychosis is impacting their function and making them scared and maybe it's impacting their ability to eat or trust their caregiver, then that should be treated. If somebody is so aggressive that they are presenting some danger to themselves or others, that should be treated, and that segues into safety. So what we're really talking about when we're thinking about, let's say we can't treat, and this is something that is, as I said, aggression, what we're really doing, and we should be honest about it, is we are sedating somebody so that they are less aggressive. What doesn't work is when somebody is asking a lot of questions, which actually I've mentioned that a couple times, but it's one of the top bothersome symptoms that caregivers list. This was actually shown in a study by my colleague, Dr. Laura Gitlin, a few years ago. Medications do nothing to change that, except for the fact that you may sedate somebody to the extent that they're falling asleep so they don't ask those questions, but you're not actually treating them. So I think that's an important distinction.

Chin: Now, there are non-medication strategies for BPSD, and in your presentation, I don't know if you've coined this, but you called them, and I love this, eco-biopsychosocial interventions. If you could explain for us, you know, what exactly is that? What are some of your go-to recommendations when talking about non-pharmacological behavioral ways of helping someone who's experiencing distress?

Kales: So yeah, we developed that term, Dr. Gitlin and I, because non-pharmacologic strategies, in a sense, is naming something for what it isn't rather than what it is. That's not a very exciting way to think about things. I like to think about what people can do as opposed to what they can't do, and I think one of the best things about talking about this with caregivers is that we are actually empowering them. They don't have to call a physician to get help, but they can actually have a lot of things in their armamentarium so that they can really become empowered and change the trajectory of what day-to-day life looks like. So we think of three buckets with the echo biopsychosocial interventions. We think about interventions for the person with dementia, interventions for the caregiver, and then interventions for the environment. I've already mentioned a few for the person with dementia, which could include attending to medical issues or pain issues. We might want to look at sleep as an issue. We might want to look at boredom or lack of a sense of purpose. We might want to look at the fact that that person has nothing to do all day and is sort of relegated to sitting in a chair. So there's a lot we can do in the person category. In terms of the caregiver, that is a huge goldmine of work, and we're not looking at this in terms of blaming the caregiver or saying you're not doing this right because caregivers really are the backbone of dementia care. Often caregivers are doing this type of work with very little training and very little support, but they don't receive the education that they might need in terms of how is it best to communicate with somebody with dementia. We get a lot of coaching on that with our children, right? There are books written about how we can better communicate with our children. We know that yelling at our children, for example, is not a very positive parenting methodology, but we don't do a lot of coaching with our caregivers about what are some ways we can talk to people with dementia and how can we achieve good results in terms of our communication styles. There's many more things we can do with caregivers, but that's one. Lastly, In terms of the environment, we want to think about the environment. First of all, overall, we want a safe environment for people with dementia, but we also need to think about an environment that's stimulating, but not too stimulating. Often people with dementia, for example, are sort of sat in front of a TV. If you think about some of the things that people might see on TV, whether it's really disturbing news or television programs, maybe that's not the best way. One of the things that we like to talk about is the ability of personalizing activities, doing activities with the person with dementia that are things they like to do and can do. My colleague Laura Gitlin has shown that even in just doing that part of the approach, we get a lot further down the field in terms of preventing and managing behavior.

Chin: You are one of the creators of the DICE approach, which I know many of our listeners are aware of, but for those that are not, it's an incredibly powerful way of helping people understand and address BPSD. Personally, we use it here at the University of Wisconsin, where I practice geriatric medicine, and it is something that we promote among our trainees and the community. So Helen, can you share with us the origins of the DICE approach? You know, what exactly is it? And then what do you think caregivers, care partners listening should know about it?

Kales: Well, I'm really excited to hear about that uptake, and we've had a great partnership also with Dr. Art Walaszek, who's at University of Wisconsin, on promoting the DICE approach in the state of Wisconsin. We created it because the approaches are not rocket science, but there was a lack of packaging. I think one of the things that drug companies have, and believe me, I'm not against people taking medications when they're needed. I'm a doctor, so that's very important. But I think one of the things our drug companies do so well is they are able to package their products and detail them, and we realized that there was a lack of that type of uptake and promotion for the type of strategies we've been discussing here today. So a group of us got together in 2011 and had a consensus conference across disciplines in geriatrics, including geriatric medicine, psychiatry, social work, nursing, psychology, and others, including pharmacy, to really think about how we could package these approaches and not prevent prescribing, but prevent knee-jerk prescribing, that is really a prescribing that is without a look under the hood at what's going on with the person. So DICE was created out of that process, and I'm happy to say, in addition to Wisconsin, there are many states now that have adopted this, many centers, and we've even had uptake internationally. We're very excited about that. What we think needs to happen is that these approaches need to be taken up by some of our policymakers so that as opposed to just measuring, what we shouldn't do and looking at, you know, the percentage of antipsychotics that are being taken in various care settings, that we look at the percentage of people that are doing assessments of underlying causes. So just to go briefly through the approach, the first part D is described, which is a full description of the behavior, and we train our caregivers to try to play that back like a scene in a movie because if they get the who, when, where and what out of that description there will be often clues to both what could be causing the behavior and what could help to mitigate the behavior. So that sets into the second letter, which is I for investigate, where we look at some of the clues from the described step and look at what could be happening with the person. Are they in pain? Do they have an infection? Is there an issue going on with the caregiver or in the environment? That investigation then leads to the create step where anybody involved in the person with dementia care, including themselves, team up to think about creative solutions to what's going on. with the person, the caregiver, and the environment. And then lastly, E is evaluate. After we try those creative solutions for a week or two, we want to be honest and evaluate what's working and what's not working and are the behaviors still present? Where do we need to go from there? So again, not rocket science, but designed to really train people to look at triggers and help to manage them when they occur and to really emphasize quality of life for both the person with dementia and the caregiver.

Chin: Helen, one of the things I like so much about the DICE approach is that it's a framework. There's a little bit of an algorithm to it, but it is very personalized to the individual, and as you mentioned in your presentation, it helps people form good habits because we're trying these interventions that will hopefully be helpful for the individual and in essence lead to reduced distress or even well-being. One of the things that I have emphasized in my own practice when I talk to trainees or nursing homes is to truly separate the D and the I. I think for me personally, that describe is the most important part, sort of like getting a good clinical history, and I noticed that people often want to include their own impression of, well, I saw this happen, it's because of this, and I try to help people separate that so that, no, please just, like you just described for us, describe the scene, replay it in your mind, and then we can talk about the potential causes. Do you have a particular one of the D, I, C, or E that you think is so absolutely critical or the one that you emphasize a lot when you work with families or care professionals?

Kales: Nate, I could not agree with you more. I think that one of the things we see early on, especially with providers when we do trainings, is that people want to sort of jump to a conclusion. They want to start thinking, well, what if we did this? What if we did that? While I love that enthusiasm, I tend to say, now, wait a minute. We need to take a step back. We're not there yet. Could we take a step back and get that full description? I think it's training people to really think about getting that full description that you are so right. It is the absolutely critical and rate-limiting step because everything emanates from that. Jumping to conclusions about why something is happening doesn't really help us to personalize that care plan for the person, and it is just such a critical step. So you said it way better than I did.

Chin: I appreciate that. Now, sometimes you can't find a specific cause and so you can describe it well and in your investigation, you're still coming up empty-handed. But that doesn't mean we can't try interventions that we know have helped in the past. So I'm wondering, you know, what are some common factors that you think can contribute or just common strategies that you recommend to families when there isn't a particular trigger?

Kales: That's a great question and that does happen. I would say if we really push the envelope though, and sometimes it's actual direct observation that, you know, that is very helpful, not always possible, but let's say that the caregiver is unable to help us come up with something. I agree. There's some low hanging fruit that we can do with everybody. One of those things that I like to think a lot about is natural light. A lot of our people living with dementia, maybe living in settings, whether it's at home or in care settings where they receive only a fraction of the natural light. that they should be getting and one of my colleagues has estimated that as only at times one-third to one-fifth the natural light that's needed to entrain circadian rhythms and of course what ends up happening is that people who don't have entrained circadian rhythms can't sleep and in the worst part they get day-night reversal. So I like to think of natural light as a really easy and great way to help some of the situations that are going on, whether it is something like, quote, “agitation or sleep issues” or some, you know, “dysphoria”, getting people natural light, whether that's opening the shades or taking somebody out for a walk. Now, of course, we have to wear a hat and wear sunscreen and all those kind of things. But but just getting that natural light can be very important. I think communication is another one of those very low hanging fruits that it cannot hurt at all. No matter who we are, our communication can be improved. One of the things we see with some caregivers and again, this is not at all to blame anyone. But we will often see people use confrontation. Confrontation does not work with people with dementia. Despite that fact, I've seen it repeatedly play out in my office. Well, dad, you know, mom is dead. When are you going to remember that? Or that never happened? Or you're telling lies. So I think that training people to kind of go along to get along is a really sort of simple but key communication strategy. So things like that, that are really just part of good care can really help when we don't know the exact trigger or cause.

Chin: Go along to get along. That's wonderful, Helen. I really like that. Does the DICE approach allow for medications? And if so, what should providers be telling families before they recommend the use of an antipsychotic, for instance?

Kales: So absolutely. First line, we recommend medications if there is significant depression. We would recommend an antidepressant, not for sort of transient sadness, which we all kind of have, and I think sometimes antidepressants are overused in particularly in institutional settings. But if somebody has a significant depression that's impacting their function, we'd recommend an antidepressant. We would recommend antipsychotics as a treatment of choice if somebody has psychosis with some impact to their functioning or safety. I say that because there are some hallucinations or issues that really can be handled. They're not bothersome to the person to put it simply. So if somebody is seeing something but they say well I'm able to tell my brain that that it's playing tricks on me and I push it out of my head, I wouldn't start an antipsychotic for that person. Lastly, if somebody is so aggressive that we really can't figure out what's going on with them because we can't get a full description of what's going on or we can't get labs to figure out if they're in pain or have an infection or what have you. We would use a medication to temporize those symptoms. But I think what's really important is to communicate to families, first of all, that there is no magic bullet, despite what people may be told in support groups. Oh, this medication did this or that and was perfect and was the godsend doesn't mean it's going to work perfectly for your loved one, and it doesn't mean that everything is going to change. We may be able to improve things. But again, there is no magic bullet or 100% because these symptoms are really multifactorial. I think the other thing for families to know is they should be vigilant for side effects. We want to make sure that we're not making things worse, and they should also know that behaviors are a moving target. What we see today may not be what we see in a week, may not be what we see in a month, so we always need to be thinking about, is that medication still needed? If somebody was aggressive today and we treated them with an antipsychotic and they've calmed down. Maybe now we can do that investigation such that we get a better understanding of why the aggression was occurring, and then over time, what we need to do is taper and discontinue that medication because they shouldn't be on it for a year without some kind of examination as to whether they still need it.

Chin: You are implementing the DICE approach in both healthcare systems and in people's homes. So can you share with us how this implementation process has gone? And in particular, has anything surprised you?

Kales: I think one thing that surprises me is that I just am always so pleasantly surprised by the creative solutions that people come up with when they get it. When that light bulb goes on above their head, we had an LVN the other day in one of our groups who brought up the issue of somebody wandering and the fact that the treatment team was going to use medication for this person, but sort of remembered, “oh there's this DICE study going on.” “Maybe I'll refer to the LVN who's been trained,” and she was able to get the full description from the family. Do an investigation and figure out that this was a woman who was an avid gardener at home and the time of the wandering coincided with the time that she used to garden at home and go out to the courtyard, so it turned out – it almost sounds so simple like I made it up but she's telling this story in this group – they discovered that this woman was trying to get out to the facilities garden, and that by kind of acting ahead of that behavior and anticipating it and getting her out to the garden and giving her tools and allowing her to work in the soil, the behavior was completely redirected. So I guess I just want to say one more thing about behavior is that what we sometimes hear from advocates is that they don't like the use of the term behavior, because it's largely been used in a pejorative or negative way, like challenge being behavior, negative behavior, difficult behavior. I would like to say that behavior is universal. I have behavior, you have behavior, we all have behavior. So what we're really trying to do is take people's behavior and decode it and figure out what's driving that and how we can best help. Again, not at all in a way to say you're acting badly, but to say you're telling us something. You're telling us something with this behavior and it's our job to figure out what it is and how we can best help you.

Chin: To end our podcast today, how do you see technology helping in this effort to improve the lives of people living with dementia and their families, particularly when it comes to addressing BPSD?

Kales: Another really great question. Let me start with the negative. I think one of the things we sometimes think about is technology as a replacement. Like, how can we monitor people who have dementia and delirium in the hospital without people? We'll put a tower in their room and then we'll monitor them from down the hall. Then, when they try to pull up their lines, we'll talk to them over a speaker and they might even think they're hallucinating and get scared, but that's what we're going to do. That's what I would sort of say is not a great use of technology. Where I really see technology helping us is the ways that we can train people or not even train people, but get people the strategies without the training, without the need for them to leave their homes and go sit in a training somewhere else and, you know, spend all day doing it. So one of the things we're working on is putting the DICE approach, which we've done into an app and having caregivers use it without any training. We're doing a large nationwide trial now on that. Basically how we're using the technology is by putting in some information across a few screens from the caregivers that get the context of the behavior, an algorithm is working in the back to create those, to pull out the solutions that might be able to help them, and we get to the solutions quicker through the use of technology. I'm heartened by things like ChatGPT, because I also think What if we could incorporate that? So again, now the caregivers don't have to, you know, input all this information across six screens, but maybe they could dictate it or narrate it in the ChatGPT or AI could use natural language processing or other types of technology to really use that to pull out the strategies that we know will be very helpful in certain types of situations, so I think it's always a combination of the people power being made faster and more accessible by the technology.

Chin: Well, with that very hopeful answer, I want to thank you again, Dr. Helen Kales, for joining us on Dementia Matters.

Kales: Thank you so much, Nate. I really appreciate both the fact that we had the chance to talk today, but that you're doing this podcast because I think even your title, Dementia Matters, creates the space for us to really say that it does matter and to do the work that we need to continue to do for people and their families.

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