Event ID: 1038360The Lewin Group

Understanding and Responding to Behavioral Symptoms Among Individuals with Alzheimer's Disease and Related Dementias

Operator: Ladies and gentlemen, thank you for standing by and welcome to Understanding and Responding to Behavioral Symptoms Among Individuals with Alzheimer's Disease and Related Dementias conference call. At this time, all participants are in a listen-only mode. Later, we will conduct a question and answer session. If you should require assistance on today's call or if you'd like to ask a question, please press star and then zero. I'd now like to turn the conference over to our host, Rachel Johnston. Rachel Johnston: Thank you and welcome everyone. My name is Rachel Johnston, and I work at the Lewin Group. Thank you for joining us today for the Geriatric-Competent Care series on Caring for individuals with Alzheimer's Disease. Today's webinar is on Understanding and Responding to Behavioral Symptoms Among Individuals with Alzheimer's Disease and Related Dementia.

This webinar is the fourth in the series presented in conjunction with Community Catalyst and the Lewin Group and supported through the Medicare/Medicaid Coordination Office at the Centers for Medicare and Medicaid services.

I would also like to note that continuing medical education and continuing education credit is available for today's webinar from the American Geriatric Society and the National Association of Social Workers. In order to receive credit, individuals must read the learning objectives and faculty disclosures, complete the pre-test by 12:20 p.m., participate in the webinar, complete the post test with a score of at least 80% by 2:00 p.m., and complete the program evaluation by 5:00 p.m.

CME CE certificates will be emailed in approximately four to eight weeks after the post test is completed. MMCO is developing technical assistance in actionable item tools based on successful innovations and care models such as this webinar series. To learn more about our current efforts and resources, please visit resourcesforintegratedcare.com for more details. All other questions and answers will be posted to the resources for integrated care website within a few days.

Additionally, on the website you can find the presentation and post recording. Please contact ric@lewin.com if you have any questions or additional comments during or after today's presentation. Before we get started, I'd like to remind you that all microphones will be muted throughout the presentation. However, there will be a brief question and answer opportunity at the end of the presentation. If do you have a question, please use the question field to submit a question to our team. We will select a handful of questions to answer.

At this time, I'd like to introduce our moderator, Carol Reagen. Carol is a Senior Advisor with Community Catalyst with over 30 years of experience. Carol's work has included policy research, analysis, legislative advocacy primarily on health insurance coverage, programs, and

services for low income children and families, long-term care, and workforce development. Now, Carol, I'll turn it over to you.

Carol Reagen: Thanks, Rachel, and welcome everyone. I'm really pleased to introduce our expert panel for today. I think you'll find the presentations will be incredibly useful for your work. Let me introduce them in the order in which they're going to speak, and then I'll turn it over to them, and then we'll do our polls.

Dr. Gregg Warshaw is an academic family physician and a geriatrician. He's an advocate for improving the training of physicians and other professionals to care for older adults. Dr. Warshaw is a clinical professor of family medicine and geriatric medicine at the University of North Carolina in Chapel Hill. He was previously the director of geriatric medicine program at the University of Cincinnati, College of Medicine from 1987 to 2015. Dr. Warshaw was the director of the Christ Hospital University of Cincinnati Geriatric Medicine fellowship training program for physicians at the University of Cincinnati, and was the medical director at Maple Knoll Village, a continuing care retirement community in Springdale, Ohio.

He is the past president of the American Geriatric Society and the Association of Directors of the Geriatric Academy Programs. Dr. Warshaw has regularly served as an advisor to federal agencies and foundations and professional organizations and was a 2013, 2014 Atlantic Philanthropies Health and Aging Policy Fellow, where he consulted with the division of chronic and acute care at HCMS and assisted with Community Catalyst Voices for Better Health project in Ohio to bring the expertise of geriatrics into the dual-eligible demonstration projects. Welcome, Dr. Warshaw.

The second speaker is Dr. Geri Hall, who is an advanced practice registered nurse, a clinical nurse specialist, and a Fellow in the American Academy of Nursing. She's been working with people with dementia for 37 years. A formal clinical professor at the University Of Iowa College Of Nursing, Dr. Hall's currently an Advanced Practice Nurse at Banner Alzheimer's Institute. She developed the first theoretic framework for planning and evaluating dementia care--the progressively lowered stress threshold. A prolific speaker, author of 100 publications, Dr. Hall has served on public policy groups and testified before the President's panel on bioethics. Recently, Dr. Hall re-focused on caring for people with non-Alzheimer's dementias, particularly frontal temporal degeneration and the Lewy Body disease.

Then finally, we have Beth Spencer, who is a clinical social worker, specializing in dementia care since the early 1980s. She has worked with individuals with memory loss and their families in a variety of settings, including the University of Michigan's Cognitive Disorders Clinic, as the director of University of Michigan's dementia day programs, in private practice, and as a consultant to numerous residential care programs. Beth is a co-author of several publications, most recently “Coping with Behavioral Change in Dementia, a Family Caregiver's Guide”. She teaches gerontology classes at the School of Social work at the University of Michigan, where she is co-investigator of the Couple's Life Story project, a research intervention for couples. Until recently, she was the project manager of the Hartford Center of Excellence in Geriatric Social Work. As part of that work, she co-developed and is a faculty member of a new interdisciplinary 34-hour online certificate, Advanced Clinical Dementia Practice. She is

currently a caregiver for her mother and continues to council caregivers at the University of Michigan Geriatric Center.

Thank all three for joining us today. Before we turn it over to Dr. Warshaw, I'm going to ask you all a little bit of information about yourselves with this little poll. Which of the following best describes your professional area? You can see the choices up there. If you could click one and hit Submit your answer, it will give us a sense of those of you on the phone and on the web, so one more minute or a few more seconds. Submit your answer and let’s see who we've got on the phone. Do we have the results of the poll yet? There we go. Oh, great, so we can see it. Interesting. We've got the most social workers, but of course behind is someone in medicine, nursing, physician assistant, some other and a few advocacy and some healthcare administration. Thanks very much.

The next poll, we'd like to know a little bit about what setting you work in. You can see the options here, so please click one that best represents where you work, and then click to submit the answer. Maybe five more seconds--okay, and let's see what we've got for where people are working. Interesting, so we've got a split between community-based organizations and managed care organizations. Great. Some in ambulatory and homecare setting and quite a few others, so at the end of the webinar, some of you will get to say where you work in your other. We'd love to know a little bit more about where you work.

Thanks very much for that, and now I'm going to turn it over to Dr. Warshaw to open up our webinar today.

Gregg Warshaw: Thank you, Carol. Thanks to the participants for joining us today for the webinar. This outline shows you how we're going to go through the presentation. Next slide.We can now go to the learning objectives and next slide. This is a good place to start.

I think those of you who have been on the previous webinars know or you know from your work that Alzheimer's disease has a variety of presentations and symptoms--short term memory loss, other changes that we see commonly with the dementia. Along with those memory and cognitive problems, we also see a number of behavioral and psychiatric symptoms. This occurs in many adults with Alzheimer's disease and similar dementias. These symptoms can be very distressing for families and challenging for clinicians, but the good news, as we'll talk about today, is that there are many strategies to prevent or manage these symptoms so that caregivers can be more successful in helping their relatives or the patients that they're taking care of. Next slide.

These are some of the behavioral symptoms that we see in dementia. Some of these are fairly straightforward. For example, disinhibition is a symptom where people may no longer be able to maintain certain social norms. This may include interpreting people or speaking out of turn. It may be using language that people are not familiar with. Sometimes older people with dementia will start using four letter words. I've heard daughters or sons tell me they didn't even know their mother or father knew these words, and they'll start using them in conversation. These types of behavioral symptoms can be confusing and distressing to families.

There are also symptoms that fall into the category of psychosis where people have delusions and may believe that, for example, somebody is trying to poison them. They may believe that something is coming into their room--some kind of strange gas that's going to get to them. They also may have hallucinations. Sometimes these are friendly figures that they see in their room. Other times there are figures of former family members, or sometimes they're frightening hallucinations. Next slide.

As a physician, the first thing I'm trying to do when I learn about a behavioral problem in a person with a dementia is to understand if there's any secondary cause that could be going on with the person that could explain the behavior in addition to the dementia. I'm looking for a new condition such as an infection. Even simple infections like urinary tract infections could lead to new behavioral problems.

I'm looking to see if we're managing preexisting medical problems properly. People who have chronic arthritis may not be treated adequately, and the chronic pain could lead to behavioral symptoms, or they've been started on a new medication. Particularly, I'm looking for anti cholinergic medications like over-the-counter antihistamines or medications that are used for bladder control. These new medications could interfere with people's ability to actually maintain their normal state.

Anytime there's something new going on or their behavioral symptom is acute in onset or evolving rapidly, I'm looking for a new medical condition or medication toxicity that could explain the symptom. Next slide, please.

My assessment will be taking a careful history from the patient, in particularly, the informant or people that are directly observing the behavior and are with the person on a regular basis. When did it start? What's been the course of the symptoms? Are there associated circumstances like a new caregiver or a change in environment, or has the person not had adequate sleep? Have there been other stressors, and how is the caregiver doing? Is the caregiver stressed out, exhausted? This could lead to the person with the dementia starting to recognize that things are not good in their environment. Next slide.

Not all dementias are Alzheimer's disease, and we'll emphasize this more as we go through the program, because when you have other causes for dementia, you may have different types of behavioral symptoms that need to be managed in a different way. It may occur in a different time sequence.

This example is a case of an 80-year-old woman who has a nine-month history of short-term memory loss. She is also losing some of her ability to manage her day-to-day activities, but her family is concerned about her having hallucinations of small children and animals. She is also having more trouble walking and has hand tremors. On exam, I actually noticed that there was increased muscle tone and resting tremors. These findings, particularly the early onset of hallucinations, more trouble walking, and neurologic findings on exam is very atypical in early Alzheimer's disease. These would be findings that we'd find much later in the illness--not just a nine-month history. This presentation is not typical of Alzheimer's. Next slide.

This presentation, actually, that you just heard was probably more similar to what I'd see in somebody with Lewy Body disease. I've listed some other types of atypical dementias or different causes of dementia that are different than Alzheimer's. Dr. Hall will speak more about this in her presentation. Next slide.

One of the areas of controversy in the management of behavioral symptoms in dementia is the use of medications to control symptoms. The class of medications that has received the most attention are the anti-psychotic medications, particularly the atypical anti-psychotics which are widely used now for the treatment of psychiatric illness in adults. These atypical anti-psychotics are particularly useful at times for aggression and psychosis, but there are many risks with their use. These include cerebral vascular disease increases, side effects that may cause motor disruption in the person's function. They may also cause metabolic disorders like diabetes.

The most important thing to know is that all anti-psychotic agents now carry an FDA warning regarding increased all-cause mortality in dementia. Our focus today is really going to be on trying to use environmental and behavioral approaches to the management of these diseases and avoid the use of medications if at all possible. Next slide.

We're going to be looking at precipitating factors that cause excess disability and focusing on prevention. Interventions that involve creativity and trial and error are important--you can go back to that. Thank you--and using non-pharmacological treatments first. One example of creativity was a case I had in a nursing home recently where a patient of mine had decided after watching a little bit too much TV news, that the Canadian army was invading the United States. This had gotten him pretty agitated. He was actually organizing the other people on the unit to prepare for invasion by Canada and is really starting to rile things up. A very clever nurse went ahead to her computer--next slide.

--and created this little newspaper which you may not be able to see very clearly, but basically she created a little newspaper clipping that she could give to the patient which proclaimed that the United States and Canada had formed a treaty and things were going to be okay. It was amazing how this simple intervention calmed him down without medication, and he began to relax. We encouraged him not to watch the news so much. Next slide.

I'm going to go through a few case studies very quickly that are examples of the types of problems that come up in my practice, just to give you a feel for the kinds of things that we need to be working to help families and caregivers take care of when they are working with relatives with Alzheimer's disease.

This is a case of an 82-year-old husband/caregiver and his 80-year-old wife who has Alzheimer's. He's concerned because his wife has wandered out of their house several times in the past month, and they live on a fairly busy street. He wants to know if we can prescribe a medication that will keep her from wandering. Next.

This case is an 83-year-old wife caregiver of an 85-year-old patient with Alzheimer's disease, and she's calling me on the phone. She's concerned because her husband is having increasing difficulty sleeping through the night. The problem has developed slowly over the past several

months. He falls asleep okay but is awake again in a few hours, and this is disturbing her sleep. She is pretty desperate, and she wants to know if I can prescribe something that will knock him out at night. Next slide.

This case is of a 77-year-old woman with Alzheimer's disease that presents with her 50-year-old daughter. The person with dementia, the older woman, is living in the daughter's home. The daughter is concerned that for the last six months her mother spends much of the day just looking at the front window--does not like to do much else. The mother is eating and sleeping well, and her weight is stable. The daughter is concerned that her mother is depressed, and she would like you to prescribe treatment. Next slide.

This case was presented by a home care nurse who wanted to talk to me about an 80-year-old male with Alzheimer's disease who was persistently agitated and aggressive with the home health aids. This nurse is concerned for the safety of her staff. Physically and verbally aggressive behavior may be provoked by just routine requests like for bathing or appear without a clear precipitant. The nurse would like to discuss with me prescribing medication and trying to calm the patient down. Next slide.

Finally, this is a case of a 79-year-old man who is experiencing changes in behavior. He was diagnosed with Alzheimer's disease ten months ago, which is relatively recent. Recently, he has started to have episodic paranoid ideas his children's interest in taking control of his stock portfolio. There are no new medical problems, and the patient is not taking medication. The family wants to know how to deal with this paranoia. Next slide.

Another case is, while making a home visit; you see an 85-year-old female Alzheimer's disease with a six-week of disturbing hallucinations. The family states that the patient describes men coming into her room at night and threatening her. She becomes quite agitated during these experiences. The family confirmed that no men are actually coming into her room, although the symptoms are intermittent. They would like you to intervene in some way. Next slide.

With these cases as examples, we want to spend the rest of the time during our presentation--and Dr. Hall and Beth Spencer will be talking about ways to approach these kinds of problems in a way that understands their cause and tries to avoid the use of medications and maybe can prevent some of these.

The key thing is to listen carefully to the history, be sympathetic, understand precipitating factors, and be creative, and of course do no hard to the patient or the family as you're trying to help them with these difficult challenging behavioral problems that are common in Alzheimer's disease and related dementias. I'm now going to turn the presentation over to Dr. Hall.

Geri Hall: Thank you, Gregg. I'm delighted to be here. I've got a lot of slides--next slide, please--and I'm going to go through them fairly quickly. I'm hoping you get the gist of this and will have access to the slides at a later time for further study. When we're planning care for someone with Alzheimer's type dementia or any dementia, we look primarily at the premorbid personality. Who was this person? How did they choose to spend their life?--the type of dementia the person has, the symptom presentation, the usual disease trajectory. We know now that if we follow the

pattern of functional decline in someone with Alzheimer's, we can really pinpoint where they are in their disease fairly accurately--safety issues, and then the caregiver issues. Next slide, please.

With the normal Alzheimer's dementias, there are two types that we see a lot of. Vascular dementia is really pretty rare by itself. It's usually part of a mixed dementia. Frontal temporal degeneration or FTD comes in several different variances. It's where there is deterioration in one side or the other of the frontal lobe and the temporal lobes. If the person has non-dominant side changes, what we tend to see is what we call behavioral variant. This is a patient who is narcissistic and negative. They're very dis-inhibited. They have obsessions, loss of empathy. One of the critical factors is they have anosognosia which is no insight. You can tell them have this disease over and over, and they have no clue. They have grandiose behaviors, lack of boundaries with others, anti-social behaviors. They may be hyper oral or hyper sexual. Very often it's misdiagnosed. I recently completed a study. The average family has to pursue a diagnosis for four and a half years before they're actually diagnosed. Next slide, please.

Thus, what you often see is that you've got a patient in long-term care that is disruptive that carries an Alzheimer's diagnosis, but the staff walks around going, "This isn't Alzheimer's." The second is Lewy Body disease, which Gregg mentioned quite well. This is a patient who has fluctuating mental status. They have a REM sleep disorder, so you put them in bed and their poor spouse is awake all night because the patient is jumping around in bed. They are exquisitely sensitive to medications, particularly mood-controlling medications. Using one-eighth the dose is very often indicative of what you would use for Alzheimer's.

They have psychosis and many, but not all, have a Parkinsonism that does not respond to the Parkinson disease medication. They also develop autonomic dysfunction where they have orthostasis where they blood pressure falls precipitously and they pass out or just simply fall. Next slide, please.

What we're going to talk about today is using the theoretical model progressively lowered stress threshold or PLST to help determine what behaviors are like and why they're occurring and how to intervene. Next slide, please.

We look at Alzheimer's disease over the course of the illness as something that diminishes your ability to tolerate stress. Also the patient has heightened stressors, and I'll tell you why in a few minutes. Basically, everybody has three behaviors. You have normal behavior where you're calm and relaxed. You have anxious behaviors where there is an increase in psychomotor behavior and discomfort. The patient begins to want to leave

Then the third is dysfunctional behavior, sometimes called catastrophic behavior. This is a form of fight or flight. What's important about is when the patient reaches that behavior, they can't communicate effectively with you, and they are not as functional as they were in the anxious stage or the normative stage. What's important to understand is that this is a gradual decline over time, but when a patient starts to become dysfunctional, they always become anxious first, so you can pick up on what's about to happen. Next slide, please.

This slide simply demonstrates a typical day. Let's say you were in a care facility or an assisted living and you get the patient up early. You take them through breakfast and activities. Then around lunchtime they begin to become a little anxious. They sit down. They have lunch. Then later in the afternoon or even in the middle of the night, they are becoming very anxious, very upset. If this is allowed to continue day after day after day, you will have to medicate, but in the beginning you won't. Next slide, please.

Let's talk about the symptoms nobody tells you about that cause a lot of problems in Alzheimer's dementias. We know the memory for recent events, but one of the biggest losses patients have is their sense of time. Most repetitive questions have to do when are we going to do something and how is it going to happen, but if you give the patient the actual times, saying it's 10:29, that means nothing to the patient. With repetitive questions, it's really critical to ask the patient why they're asking so that you can actually intervene and get what they want.

The other thing is the visual spatial perception. This patient doesn't see what you see. They don’t hear what you hear. What's called their association cortexes--that which gives what comes in from the environment meaning--is damaged. With visual spatial perception, the patient loses their depth perception, and they lose the ability to see things moving across a horizon. Next slide, please.

The next is the affective responses that nobody really talks about. There is a loss of affect, but the patient becomes very self-absorbed. This tends to drive caregivers crazy. They lose their inhibitions and, very important, they lose their tolerance for multiple stimuli. What's cool about it is the patient always tells you because they want to leave. Next slide, please.

The next slide talks about planning losses. Planning losses has to do with the patient's executive function and then later in the disease, motor apraxia. The patient knows what they want to do. They can tell you what they want to do, but when they try to do something, they cannot get the steps in the right sequence in order to get the job done and reach a goal. What you see is the patient will refuse to do the activity or not be able to start an activity, or they wander off in the middle--not because they've forgotten what they're going to do, but because they can't figure out what step comes next or they get things upside down and backwards and turned around. What's important here is that the person is very aware that this is going on and it's totally frightening. Instead of saying, "Gee, John, you could put your sneakers on yesterday," you want to say, "Can I help?" or you want to distract them to break up that thought and then progress. Next slide, please.

Then nobody tells the family is a loss of stress tolerance. The way we see this is night wakenings, sundowning, late day confusion. It's very interesting. When you examine the studies on sundowning, it has nothing to do with light. It has everything to do with fatigue. Patients have repetitive behavior, agitation, and aggression. Next slide, please.

Excess disability is a very important concept in dementia. What it means is that there are conditions that are characterized by decreased functional and increased problem behaviors, but they're not directly attributable to the underlying pathology. These conditions are generally reversible or can be prevented. Next slide, please.

We have six basic causes of types of disability. The first is the most common and that's fatigue. For this patient to see and clothe, plan their day, etcetera, what happens is its exhausting. It's like if you were taking final exams every hour of every day. What we find is that these patients do much better if they get several short rests a day--usually in the morning about 30 minutes, and about 90 minutes after lunch. In the early disease, it's a timeout. They're just having a break. In later disease; most patients nap. We want to intersperse high stimulus activities with rests, so we rest that brain.

If the patient is up at night--and I want to repeat this--if the patient is up at night, before you reach for the trazodone or sleeping medication, have them increase their rest period during the day. This will not keep them up at night if they rest during the day. Know your person's best time of day, and plan activities that are intense, since she's going to the dentist, for the patient's best time of day. Use mornings which is most people's best time of the day for meals and important things. Next slide, please.

The second primary cause of secondary excess disability is change. If this patient gets out of their routine and out of their basic environment, what happens is they have to think about everything they have to do. The more they have to think about something, the less able they are to do it. We let them have a consistent routine during the day. You can introduce change, but the basic activity of the day follows a predictable pattern. Please don't take them traveling. With travel you're tired. You're in a strange place. There are strange people. There are a lot more people. For those of you who are interested in travel with people with Alzheimer's, we have a booklet that I would be happy to send you. We'll give you the address at the end.

Consistent caregivers--and another thing is relocation effect. We anticipate that when a patient is transitioning into long term care that there's going to be about two to three weeks of what we call relocation trauma. We plan for that and keep the stimulus low in the environment and try to work with that. Then, finally, this is our time of year when we give out more advice on secondary behavioral symptoms simply because holiday decorations and all of the plans that go with it. Next slide, please.

The third is inappropriate sensory input. The patient can only tolerate certain group sizes. An older research study found that 23 appear to be the maximum group. We know that long-term care--the worse place that we have in the long-term care center for people with dementia is the dining room. We try and get them to eat separately, eat early, or go into an area that's less stimulating. Provide respite during high intensity activity. Watch for responses to TV.

We have a rule in our practice that you never watch anybody on TV who you wouldn’t have to your house for dinner. TV causes more illusions and delusions, and it's so much easier to turn off the television than it is to try and give medication for this. Use the patient as a barometer for how much stimulus they can handle. If your patient is saying, "I'm leaving," it's time to leave. Next slide, please.

The fourth is excessive demands, and that includes people questioning continuously and also families who are in crisis or having conflict. We have to assume the patient is doing their best at

any given time. We use reminiscence and validation, non-confrontational approaches. We teach the caregiver a prosthetic approach that, if the patient is struggling with an activity or is unable to start it, we assist them. Next slide, please.

Affective responses to the perception of loss--patients with Alzheimer's disease frequently suffer depression. They are aware of their losses. They are frustrated. They are very frightened. They tend to lose cherished things. If I were to come to you and take your car tomorrow, you'd be angry, and our patients are too. We use group therapy. We use activity-based care planning, where as a nurse I can bathe and dress and give medications and make sure they eat, but the most important thing with Alzheimer's disease is to keep the patient engaged during the day. Adult day programs are a godsend for many caregivers who are just tapped out when it comes to planning an entire day's activity every day. Next slide, please.

Then six, we have delirium which Gregg talked about a little bit, which results from illness, discomfort. We recognize unmet physical needs such as pain, constipation, thirst and seek medical attention when someone is having a catastrophic period and it isn't resolving after a rest or providing activity and attention. We simplify the medication regiment and treatment for concomitant conditions. We treat pain. Very often with patients we don’t think about their small pains and aches.

I had a patient not too long ago where the patient was placed on a mild pain medication of acetaminophen which is Tylenol, one gram twice a day for just general. His back hurt. His feet hurt, etcetera, from age and arthritis. He was fine. The minute somebody took him off the acetaminophen, he started to scream and continued to scream until we started it again.

Wellness measures--not trying to enforce the diet so that the patient doesn't eat. Patients with dementia tend to lose their sense of smell, so all they can taste comes from their tongue, which is sour, bitter, salty, or sweet. If something's not sweetened, the patient won't eat it because it tastes sour, bitter, or salty--and then general good primary care. Next slide, please.

With problem-solving, know the usual level of function and the pattern of decline of your person. If the behavior changes happen, you want to access and treat the causes of excess disability. In your mind, you should be running down, has a change occurred? Is he overtired? Is there a large group of people? Is he watching CNN all day long on a newsfeed? Keep the caregiver safe. I frequently am asking caregivers, "Do you think you're at risk?" Most caregivers, even when they're at high risk will very often say they feel safe. We keep on as a reminder. Then keep a journal of the non-cognitive behaviors--what, where, why, when, and what happened, and what worked to resolve the issues. Next slide, please.

When the behaviors become a problem, the first thing you want to do is recognize there is no magic medication. Behavioral things are not used instead, but they're the first line of defense. First, stop what you're doing. Try to move the person to a safe quiet place. Apologize. You're done nothing wrong, but you're sorry they are upset. You cannot disagree with somebody who is apologizing to you.

Second, agree, so, "John, I'm so sorry you're upset. I agree with you. That would make me upset." What agreeing does is it puts you at the same side of the table as the patient when trying to solve problems, instead of you becoming the dementia police. The third thing is you want to say you're going to try and fix it. Let's say the patient has lost their car and the Department of Motor Vehicles has sent them a letter saying, "You can't drive."

What you want to do is say, "You know. I'm going to write them back tomorrow. I don't have time to do it today, but I'm going to write them back tomorrow. I'm so sorry you're upset." That buys you more calm than a lot of things. Record what happens. Distract with food, but redirecting a patient who's catastrophic generally doesn't work until you can get them back into the anxious or normal behavior. Then avoid that trigger in the future. Next slide, please.

With the outcome measures, we look at low incidence of problem behaviors. In my two studies we've seen statistically significant declines in night wakening. We see stable wait. We see low levels of mood-controlling medications being used, slow disease progression, and a low incidence of safety issues. Caregivers and families sometimes are happy about it. Sometimes they're not so happy, but we need to measure it anyway. Next slide, please.

I'm going to turn it over to Beth Spencer. If you have questions, please let us know at the end of the presentations.

Beth Spencer: Good morning. It's a pleasure to be here, and thank you to the organizations that coordinated this program today. Next slide, please.

I'm going to start by talking just for a minute about the language that we use. I think all of us know that the words we use have an impact on how we think about people and things. and they also have an impact on our colleagues and on the caregivers that we work with. Let me just give you a couple of examples.

Over the years, I have talked to many, many people with early memory loss, mild cognitive impairment, or early Alzheimer's or people with mid-stage who have talked about how much they hate being called demented. I do still occasionally hear how care professionals use that term. It's a label that immediately demoralizes people, makes them feel like non-entities. I challenge all of us to think carefully about the words we use with patients, with clients, with our colleagues.

Aggressive is a term that's used lots when we're talking about behaviors and behavioral issues. Again, I think it's important for all of us to, as we discuss people and as we document behavioral things, rather than calling someone aggressive, describing the behavior--"Mrs. Smith was shouting at Mr. Jones, and here is what was going on," is very different than saying, "Mrs. Smith was aggressive." Once we use that kind of a label, we start to see Mrs. Jones in a certain kind of way. Often other people become wary of her. Again, just thinking about not labeling people is important.

Dr. Hall was one of the early researchers in the field of wandering. Many, many years ago came up with the notion that there were many different causes of wandering. It's a term that many

people are trying to stop using and talk instead about walking behavior. There are many reasons why people walk. It may be because they are used to exercising and are trying to return to old patterns of exercise. It may be because they're feeling anxious and they're trying to escape from a situation that's uncomfortable. It may be because they're trying to find the bathroom or some other place. Again, when we use the term wandering, we're labeling and it's not helpful in understanding what is the underlying cause of the behavior that we're seeing.

I also included the term toilet in here because I often hear people say things like, "Have you toileted Mr. Jones?" Well, from Mr. Jones perspective, what that feels like is being turned into an object. None of us would like to be talked about in that way. I think this is an ongoing challenge for all of us to try and be mindful of the language we use in ourselves, with our colleagues, and in our documentation. Next slide, please.

Behavior is a form of communication for people who can't always express their needs and feelings and desires in words anymore. I think the previous speakers have both made it clear that sometimes there's an unmet need, an unmet desire, or an environmental trigger that is causing the behaviors that we see. It's our job to try and understand those. Next slide, please.

Teaching families about these underlying causes of behavior can be a very powerful intervention. I just want to point out a couple of studies that have been really helpful in thinking about so-called aggressive behaviors. One was an early study done by Dr. Colon-Mansfield and colleagues that really made the link between cognitive impairment, people having trouble doing their activities of daily living, and agitated behaviors. I'll talk more about that in a minute. The other statistics here are pretty impressive--that 66% of community caregivers report aggressive behaviors during personal care, and 86% of staff in nursing homes report the same. Next slide, please.

Those are big numbers, and I think the implications are that we really need to look at personal care, since there really are a high percentage of people who are upset during personal care. Understandable. If any of you have ever been in a hospital and you needed help using a bed pan or going to the bathroom, you know that it's humiliating. It does not feel good, and this is happening every day to people who need help going to the bathroom or with bathing or dressing--other personal care--many feelings people have that lead to some of the behavioral reactions that we see.

People also don't always recognize that they need the help. They may think of themselves still because they lack insight into the changes that have happened to them. They may believe that they had a shower this morning when, in fact, it's been several days. As Dr. Hall said, arguing doesn't work at all. Thinking about other approaches, which I'll talk about in a minute, care partners or caregivers often become very frustrated, impatient, and upset themselves during personal care tasks when it's not going well. That just really increases a negative tone to the whole encounter and may make the whole thing worse. Next slide, please.

Many professionals are starting to use the term care partners instead of caregivers or along with caregivers, because again thinking about language, care partners implies that this is a partnership.

It's something we're doing together. The person with dementia and me are working together to accomplish a task instead of me doing it to them--another thing to think about.

Helping caregivers or care partners understand the link between activities of daily living and increased agitation can be very helpful and teaching them ways to try and decrease agitation during ADL care. Next slide, please.

I'm going to talk for a minute about bathing, because so often we see problems with bathing. There was an excellent study done by Philip Sloane and his colleagues in 2004, where they looked at 69 nursing home residents who had demonstrated or exhibited agitated or aggressive behaviors during bathing. They divided them into three groups--a control group where there was no change in the bathing procedures in the nursing home, a person-centered care bathing group where they saw a 53% decrease in the behaviors when they implemented that intervention, and a bed bath group where they saw a 60% decrease. Next slide, please.

What did they do? Well, the bed bath group actually got both interventions. The staff was trained in person-centered bathing techniques, which I'll describe in a minute, but the people in this group were bathed in the bed using warm no-rinse soap towels. They remained partially covered at all times and were essentially massaged with these warm towels. There was a 63% decrease in the behaviors. My guess is that many of those people were very frightened or in pain during the traditional bathing and this was a comforting way of receiving a bath. Next slide, please. It can also be done at home, by the way.

The next slide talks about person-centered bathing--what that group did and what the training looked like. First of all, caregivers were trained to focus on the person rather than the task. This is about relationship building. All of us, when we are doing these kinds of tasks with a person with dementia become task-focused very easily. Instead really paying attention to the person, to their feelings, how they're doing--talking to them instead of just going right for the task--is really important. Choices were provided. The person was kept partially covered as much as possible. They were really attentive to the temperature of the room and the shower. They used distractions for some people who needed it, whether it was food or music. They also used bathing products that were recommended by the families because they were familiar. Next slide, please.

Translating these, helping care partners, caregivers, whether they're in a home setting or wherever the person is living, they can use these same kinds of approaches. When I am counseling caregivers, I start by helping them think through the entire bathing process. What are they doing? I ask them to describe it to me step-by-step, and we analyze where some of the issues may be. Really, I first start by saying, "What do you think your relative is feeling?" and, "What do you think you're feeling during this process?" I always start with feelings when I'm working with people to look at behaviors, because feelings undermine so many of the behaviors that we see.

I try and help families or staff pinpoint the triggers that may be causing some of the agitated behaviors. We look at room adaptations. We discuss ways of making it more person-centered. Because even bringing up bathing or going to the toilet is often difficult for caregivers and right

away gets a negative response, we often role play the conversation and the approach and think about how else to do it. Next slide, please.

Communication is a huge cause of behavior challenges. I like this cartoon. The officer thinks he's giving clear directions. The person is hearing something very different. Next slide, please. I think that happens frequently in dementia care.

Let's take a minute and just think about a late afternoon situation--something that might be called sundowning. Mrs. Smith is frantic because her husband's behavior becomes difficult in the late afternoon between 3:00 and 5:00 his mood changes. He becomes increasingly upset. He paces. He wrings his hands. He shouts and curses and follows her around. You'll notice the language here is very descriptive. It's not just saying Mr. Smith is agitated or aggressive. Next slide, please.

In working with Mrs. Smith, I certainly would start by empathizing with her, thinking about what he is feeling, thinking about what she is feeling, and then helping her identify possible triggers. Dr. Hall mentioned that fatigue is very often the most frequent cause of sundowning behavior. That's where I would start certainly is looking at possible fatigue levels, but there are a lot of other things that may be playing into this--hunger and needing to go to the bathroom, the TV is on. Maybe she's busy and she's ignoring her husband. Whatever it is, we walk through as many possible triggers as we can think of together and identify some ways for her to approach this time in the day differently. Also, I really teach her how to de-escalate behaviors--some of the things that Dr. Hall already mentioned. Next slide, please.

These are examples of some strategies she might try--thinking about the environment, what's going on. I think I don't have a rest period in here, but that would be one. Another one would be for her to think about respite care--having someone else come in during that period if she's busy or tired--looking at hunger, looking at her own behaviors. Sometimes distraction is the best approach in this situation--going for a walk or a drive. Next slide, please.

There are lots of other strategies, and when Mrs. Smith leaves, I give her--we have written out a list together which she takes with her. In summary, listening to families is very important. We don't always listen enough, and listening to the person. Sometimes they can articulate what is behind a behavioral problem recognizing that the caregiver's priorities and ours may not be the same. Sometimes I've been working with people where I saw a clear safety issue, but they were focused on the fact that they couldn't get their relative to take a bath. Well, I will start with the bathing issue, because I want to win their trust, I want them to know I'm listening to them, and then I will go to the safety issue, which may be my priority--educating them.

Also, I want to make sure everyone knows that the Alzheimer's Association has a 24-7 helpline. Many caregivers I've worked with have found it incredibly helpful at 2:30 the morning to be able to call and talk to a trained person about what's going on with them. Next slide, please.

I want to just take one minute to tell you about our new advanced clinical dementia practice certificate at the University of Michigan. It's quite in depth--34 hours--12 hours of which are live webinars and 22 hours of self-paced podcasts. It is taught by neurologists, psychiatrists,

geriatricians, social workers, neuropsychologists, public health professionals, and is over a two-month period. The next cycle begins in March, and there is a website there if you are interested. We have people from all over the country. We've had some people from out of the country participating as well. Next slide, please.

I do want to say that you can email me, if you would like to know more, if you have questions about that. Next slide, please. There are a couple of slides of references. Next slide, please, and the next one.

Rachel Johnston: Thank you Carol, Geri, Beth, and Gregg for sharing your knowledge and experiences on understanding and responding to behavioral symptoms among individuals with Alzheimer's disease and related dementias. In the remaining time that we have left, we will turn our attention to a few questions that we've received. At this time, please, participants enter any questions that you have in the Q&A feature.

Before we turn to questions, as a reminder, for those of you seeking CME CE credit, you can begin to complete the post test now using the widget at the bottom of your screen. You must score an 80% or higher on the post test. There are a maximum of two tries allowed. You have until 2:00 p.m. to complete the post test, and you will also need to complete the evaluation of our webinar to receive CME CE credit. This evaluation is also available using the widget on the bottom of your screen. The evaluation must be completed by 5:00 p.m.

We will now turn to our first question. Our first question is for Dr. Warshaw. You mentioned that there are other dementias other than Alzheimer's that can be linked that can cause behavioral symptoms. Are there differences in the specific kinds of behavioral changes associated with each type of dementia? For example, is there a certain type of behavioral symptom that's more common with vascular dementia as compared with the others?

Gregg Warshaw: This is Dr. Warshaw. Yeah. I think that the key thing to remember is that early in the disease there are certain symptoms that are much more common in atypical dementia other than Alzheimer's. As Dr. Hall has pointed out in her presentation, in people with Lewy Body dementia you might have more hallucinations, or you might have more personality changes. Frontal temporal dementia you might have more personality changes early on. In vascular dementia one of the things that we notice early on is maybe some neurologic findings, some physical findings on exam. Behavior will vary based on where the stroke disease is, because vascular dementia is really a stoke-related dementia.

Early on in the disease you can make some of these distinctions. As the disease progresses, it becomes a little harder because late stage Alzheimer's disease has a lot of these similar findings. I think it's important that we don't use dementia as a term without characterizing it by cause. I think of it like congestive heart failure. There are a lot of causes of congestive heart failure. You can have congestive heart failure because of vascular disease and coronary artery disease, or you can have congestive heart failure because of valvular disease. It's important to describe the cause.

When I see on a diagnostic list the word dementia, I always want to understand what the clinicians think the actual cause of the dementia is. If we think it's Alzheimer's, we should say

probably Alzheimer's disease. If we think there is mostly a vascular component, we should say vascular disease. If we're not sure and we think there is a mixture, we should state that as well. If we're more precise in diagnosis, then we can be more precise in looking for behaviors that are associated with that diagnosis.

Rachel Johnston: Great. Thank you for you answer. This next question is for Dr. Hall. We've received a couple of questions around the idea of more sleep and sleeping better at night. Could you explain more on how more rest during the day could help someone sleep better at night? In other words, if you could explain on how long someone could sleep during the day will not keep them up longer during the evening or so.

Geri Hall: What happens is the patient becomes overtired. It's almost like a child before Christmas. They're so excited. They're so excited. The other thing is that the less rest they have during the day the earlier they are going to bed, and so they may go to bed at 7:00 and by 2:00 a.m. they've had a full night's sleep. What I suggest to families, because families get very skeptical when we suggest this--is to try it for 24 to 48 hours and see what happens. What we find is that the patients sort of automatically gets into those behaviors because it's more comfortable for them, and it really does--trust me--help them sleep better at night.

Rachel Johnston: This question is also for Dr. Hall. If a family member is coming to you with concerns about their family member exhibiting behaviors similar to a UTI--for example, being forgetful and wandering and could be being aggressive--how the family member keeps talking about the UTI--what approach would you suggest be used with the family if they keep mentioning the UTI instead of any other rationale for this particular type of behavior?

Geri Hall: That's probably the most common calls that I get from my patients who are well-established is something has changed, something sudden has happened. It's been a period of a day or two days or even a week. Something is wrong. I send them instantly to their general physician, primary care physician, or if it seems more acute to what they're saying, to a local emergency room so that they can get treated medically.

We're very careful to use a lot of patient education, and it centers around these triggers. Our families--plus they're pretty tech savvy. They're on Internet support groups, so everybody knows about UTIs but they forget about pneumonia and pain and all of the other things.

Rachel Johnston: Great. Thank you. This question is for Dr. Warshaw. Could you speak a little bit more about adverse drug events and how they can be prevented and also how homecare staff and family caregivers, care partners, play a role in decreasing adverse drug events?

Gregg Warshaw: That's a good question. I'm very interested in medication lists in older patients and particularly ones with Alzheimer's disease. I would say that the first thing that I really pay attention to is does the person have their medications adequately supervised? It's very hard for a clinician to make an assessment of medication effects on a patient if we're not sure how the patient is taking their medications. A lot of older people living at home with Alzheimer's disease or really dementia is maybe supervising their own medications. In those circumstances, we have no idea what's going on. They may be taking too few or too many. Families will come by and

check once in a while, but they're not really there watching what's happening with the medications.

In order to begin the process of understanding medication problems in older adults, particularly with dementia, you have to make people are getting the medications properly. That requires some caregiver being responsible for making sure the patient takes the medications as needed.

The next step is to look at the medication list and to try to get it down to as few medications as possible. This is a good advice for any older adult, but particularly people with dementia. They do not need to be taking medications with only marginal benefit. We need to get them to the simplest medication regiment as possible.

Then when there are problems that might be related to medication, we can try to withdraw medications that we think might be causing the trouble and see what kind of an effect we have. Once again, it makes sense to me that when you're changing medications in any patient, particularly older adults with dementia, you just change one medication at a time. We don't stop them all at once or anything like that. With some medications we have to reduce slowly. We can't just reduce them abruptly, but we try to do it in an organized way so we can see which medications might be important.

Then finally, new medications are always the first thing I'll ask about when there is a behavioral change associated with medicines. Sedatives, medications with anti-colon-inducing properties, pain medications--particularly narcotic pain medications--things that can interfere with brain function are the ones that generally will lead to behavioral problems in people with dementia. We try to be alert to when those medications are started. Older people, even with Alzheimer's disease may see multiple specialists, multiple doctors. They may not all be familiar with Alzheimer's disease. They may not all be careful about what they prescribe, and so I'm always looking to see if any new medications have been prescribed.

Rachel Johnston: Great. Thank you. Dr. Warshaw, another question we have for you is regarding alternative treatment plans. If you could explain briefly more options or alternative treatment plans. We've heard about reading out loud, yoga, an spiritual talks. If you could talk a little bit about methods of alternative treatment plans please.

Gregg Warshaw: That's a good question, but I think I'm going to turn that over to Beth, if she's willing to take that question--just about different approaches to helping people with dementia and their behaviors.

Beth Spencer: Yes. I would say that certainly one of the areas where there is increased interest in research going on is with mindfulness practice--not only for caregivers--and there is a movement to help caregivers using mindfulness--but also for people with early stage dementia. Sometimes it's simple. I will say that I had my mother with dementia living with me for six months this year and got a big wake-up call about what it really feels like to do this 24-7. I spent a lot of time with her when she was starting to get upset just having her deep breath. We would just count down together, do a little bit of breathing. I would put on some music. I think music is often a distraction but also a calming agent for people if you know what kind of music they like.

There is research going on looking at Tai Chi for people, again, in the earlier stages of dementia to help with balance, to help with, again, sort of calming. A lot of people use massage, use aromatherapy is big. Also, as Dr. Hall said, many people with Alzheimer's actually lose their sense of smell, so that doesn't work for a lot of people.

Art therapy is one that's being used more and more. A lot of adult day programs and assisted living programs are developing really innovative creative arts approaches to making the quality of life better for people. If their quality of life is better, they're likely to not be as distressed a lot of the time. I hope that answers. If either of you want to add to that, please do.

Geri Hall: I'd add one thing, and that is exercise is also good to really help with behavioral control and prevention.

Rachel Johnston: Great. Thank you, and another question for Beth--how do you recommend most caregivers strategize around providing a system with activities of daily living if they disagree with each other on how to provide the assistance?

Beth Spencer: Gosh. That's a whole other webinar, I think. If you are talking about multiple family members who are in conflict, that is certainly challenging for all of us in the healthcare professions. I've done many, many family meetings with families where there was conflict. I would say that typically what I do in that kind of situation is start by trying to understand what everyone's understanding is of the disease and of the medical situation of the person. Often people don't have the same understanding and that you kind of need to start there.

We talk about expectations each person in the family has. We talk about feelings each person in the family has, and then after we've gone through all of those things, we start looking at how tasks are getting done. Again, whether I'm working with a group of staff or of family, I always start with what are the feelings of the person. What do you think is going on inside that person? That's where we have to start because our job is to support them in whatever ways we can to make their life as stress-free as possible and their quality of life as high as possible.

Gregg Warshaw: This is Gregg. I'm going to add to that a bit. I think one of the things that's distinctive about Alzheimer's disease is that even in the mid stages, patients frequently look pretty healthy. Depending on how much time family members spend with their relative with the disease, they may not understand the degree of damage that's actually occurred in the brain. They may look at the--particularly if it's a child--look at their parent and see them as they always have been.

Another characteristic of Alzheimer's disease is that people with the disease may lose insight and may not actually recognize their deficits. The family members who are listening to their parent, for example, say, "I can do this. I don't need any help with this." Normally, children do what their parents say, and so they assume that their parent knows what they're talking about. I think in these conversations and in these sessions, like Beth described, it's important to make sure everybody understands the degree of difficulty the person is having and what their capabilities

are in this issue of loss of insight. Otherwise people will be coming at the problem in completely different perspectives.

Beth Spencer: This is Beth again. I'd like to add one more thing which is, people with Lewy Body dementia there are such huge fluctuations sometimes from day to day that it's terribly confusing to families, because the person may seem really very normal one day and extremely confused the next day. That makes it really hard for families to understand what's happening.

Rachel Johnston: Great. Thank you. The next question is for Dr. Hall. Can you please provide an example for responding to changes in sense of time when individuals can be asking repeatedly what time it is or saying it's time to go home?

Geri Hall: Yes, a good question. First of all, with change, anything that disrupts the usual sort of day-to-day routine--I'm living in Arizona and so we have a lot of snow birds coming down right now. Just that change of which environment am I in, what do I do next, how do I get the basics done during the day--is very confusing. Admission to long term care is very confusing.

With the repeated questions, what we tend to see is when are we going? When are we going? When are we going? If you say, "We're going at three. We're going tomorrow," that really has no meaning to the person with dementia. Basically, if you say, "Why are we going?" and the person says, "I want to make sure I get to church," then you can reassure them and answer their question directly saying, "I'll make sure that you get to church." A lot of caregivers tend to complain about repetitive questions. We found this makes a fairly significant difference. We can't eliminate everything, but we do.

I also wanted to comment on the medication issue, and that is I totally agree with Gregg about the patients should be supervised with medications, but we also need--when we're thinking about medications--to look at what they're taking that's an herbal or a dietary supplement, because very often those have medicinal properties and can interact with medications that they're on.

Rachel Johnston: Great. Thank you. The next question is for Beth. What are ways to help families engage individuals with respite when caregiver stress is excessive and behavior problems are present?

Beth Spencer: If the person is living at home, you really have two respite options, depending on where you live, obviously. One is in home respite. Another is adult day programs or out-of-home respite. There is very often the person with dementia is resistant to either option, feels that somehow they are being told they need a babysitter, and it's demeaning and very uncomfortable.

When I was director of an adult day program, one of the things that I did was strategized with the family over the phone before they ever brought their relative for a visit about how they were going to present it. I don't have a general answer to this, because it's very individual. It depends very much on the person and knowing the person. I usually spend some time with a caregiver helping them think about what are the objections to having either a home care or going to adult day program. Can we figure out an approach that will make their relatives feel better?

When my mother was living with me, I continually said to her, "The home care people are coming to help me." In fact, that was true. I didn't have them initially help her at all. I had them help me do things, so that she got used to having them in the home. It was more acceptable to her to some extent. It's a hard issue. It's very hard to help people with this issue and, as I said, I think it's very individual, depending on the circumstances of the person and the family.

Rachel Johnston: Great. Thank you, and our last question is for Dr. Warshaw. At what point in the trajectory of Alzheimer's disease is it the right time to use colonologist therapy? Dr. Warshaw, are you still with us?

Gregg Warshaw: Sorry. I was on mute there. I think the question is referring to colonologist agonist like Aricept or donepezil. These are medications that may help with the brain chemistry so that the chemicals that communicate between the brain cells will be increased and maybe improve memory. Generally, although these drug effects are variable and usually not too dramatic, they're best used early in the disease.

The class that's like donepezil which are colonologist agonists generally have been tested early in the disease in people. If they have some effect on the patient's memory, they can then be used for a period of time until the brain disease progressed to the point where additional chemistry doesn't help because the neurons are too damaged at that point. Figuring out when to stop those medications is always a challenge for the clinician and the family. That can work. If the medications don't work early in the disease, then they can just be stopped and can't be used.

There is another category of medication which is available which uses a different mechanism. It's called namenda or memantine. That drug can also be used earlier or later in the disease, similar to the donepezil. Some physicians will use them together, although the benefits of using them together are not that well documented. Some people use Aricept early in the disease and memantine later in the disease, so it varies from patient to patient and doctor to doctor how that works. Generally, the idea of these medications is to improve the brain chemistry which implies that there is still enough functioning neurons that you can benefit from that. As the disease progresses, these drugs have less and less value.

Geri Hall: Could I add one more thing on the daycare program? We found with that that people with dementia very often fear abandonment. They afraid they're going to be put in a nursing home and forgotten. What we do is, with the day program the caregiver goes with the patient the first three days. On the third day about halfway through the day, they steal away to extensively go to the bathroom and then just let things go to see how the patient manages. We found that our acceptance of day programs is much, much higher now that we've been doing that.

Beth Spencer: That's a great point, Geri. You can do the same thing with home care, and I always advise the caregiver to stay in the home the first few times and help the person get used to having them around before they disappear.

Rachel Johnston: Great. At this time I'd like to go ahead and thank our speakers and thank everyone for their time and participation. As a reminder for those of you seeking CME CE credit, please complete the post test by 2:00 p.m. and the post-webinar evaluation by 5:00 p.m. today.

For all of our participants, please take a minute and complete our evaluation. Your feedback will help us to continue to provide quality webinars in the future.

If you have any questions, again, please email us at ric@lewin.com. The slides from today's presentation, a recording, and the transcript will be available on the resourcesforintegratedcare.com website shortly. Again, thank you very much. Have a wonderful afternoon, and this concludes our webinar.

Operator: That does conclude the conference for today. Thanks for your participation and for using AT&T executive teleconference service. You may now disconnect.