Ways to deal with dementia behaviors

Alrighty, we are back and you are listening to the Truth, Lies and Alzheimer's Show, which by the way is brought to you by Global Media Network LLC and Passionate World Talk Radio. Passionate World Talk Radio is a wholly owned subsidiary of Global Media Network LLC, and our motto is educate, enlighten, and entertain. I'm Lisa Skinner, your host, and I'd like to shout out a very warm welcome to all of you who have joined us today. Thanks so much for being here. As I say, the purpose of this show is to talk about every aspect of Alzheimer's disease and dementia, which does include the good, the bad, and the ugly. My goal is to get to the truth, dispel the lies and myths, and unveil what I call the secret faces of Alzheimer's disease so you can have a better understanding of what it's truly like to live with brain disease. My hope is also to zoom outside the paradigm of it exclusively being a memory loss condition and to shift people's understanding of just how dramatically this disease does impact the lives of those who have it, as well as their caregivers, family members— well, for that matter, anybody who's involved in the life of a person living with dementia. I believe that knowledge is power, and because there are so many aspects of living with dementia that are unexpected and will surface out of nowhere at any time, it's important to be armed with the power of how to handle these situations. That way, you too will be able to negotiate the many challenges you will face having a loved one or while caring for someone with dementia. Living with dementia is unlike anything you will ever imagine, kind of like falling into a rabbit hole and entering a world unlike anything you've ever known, one that will become completely unfamiliar. That said, it is equally important to not only understand what will occur on a day-to-day basis, but to know why these things occur. For example, what is happening to the person's changing brain as they progress through the various stages of Alzheimer's disease? And in understanding how and why these things occur You will then be able to be prepared for anything that will challenge you. And the key to being prepared is also not being caught off guard. We need to talk about all of this because it does take very specialized knowledge and training to know how to effectively respond to the situations that will arise with a damaged brain, and to avoid any situation from escalating into an extreme one, one that we call catastrophic reactions. And I talked about catastrophic reactions several episodes ago, because as we know, unfortunately, no amount of reasoning can talk the person who is experiencing many of these symptoms out of their beliefs, so we must rely on alternative strategies to manage them. 90% of people with dementia will display the behavioral impulses that typically accompany brain diseases. Isn't that reason enough to be prepared? So, I have got some very interesting— information for you. Today we're following up on a previous episode. We talked about person-centered approach to care and the triggers that can cause behavioral responses. So, As we've already talked about, family members and caregivers already know that it can be difficult to care for a loved one as the disease progresses. Dementia can make a person exhibiting challenging behaviors and psychological symptoms upsetting for everyone involved. So, we've all got to become a sleuth to try to solve the mystery of what's behind this behavior. What triggered it? And it can be so many things, as we've discussed before. And again, although we can't prevent these behaviors or changes, there are ways to better understand and deal with them. So what I'm gonna do today is I'm going to read an article that I came across. It's from February 8th, 2013. The title of it is Dementia Care Do's and Don'ts: Dealing with Dementia Behavior Problems. It is authored by Sarah Stevenson, but a lot of the information contained in her article does come directly from the Alzheimer's Association. So here we go. Mid- to late-stage dementia and Alzheimer's disease patients often present challenging behaviors— problems for their caregivers. The anger, the sadness, paranoia, confusion, and fear they're experiencing can result in oppositional, aggressive, and sometimes violent speech or actions. Understanding and learning which strategies are most effective in dementia Behavior management will be part of your arsenal and part of your toolbox for being able to manage the behaviors that are triggered by this disease. Communication difficulties can be one of the most upsetting aspects of caring for someone with Alzheimer's disease or some other type of dementia. And it's frustrating for the patient as well as for the loved ones. Although it can be hard to understand why people with dementia act the way they do, the explanation is attributable to their disease and the changes it causes in the brain. So, familiarize yourself with some of the common situations that arise when someone has dementia. So that if your loved one says something shocking, you'll know how to respond calmly and effectively and get the situation back under control. So, common situation that we're going to discuss right now is when aggressive speech or actions happen. So, for example, Statements such as, "I don't want to take a shower," or, "I want to go home," or, "I don't want to eat that," may escalate into aggressive behavior. So, the explanation for that is the most important thing to remember about verbal or physical aggression, says the Alzheimer's Association, is that your loved one is not doing it on purpose. Aggression is usually triggered by something, often physical discomfort, environmental factors such as being in an unfamiliar situation, or even poor communication. A lot of times aggression is coming from pure fear, says Teresa Mariato. She's the family ambassador at Silverado Senior Living in Bellingham, Washington, and she also says people with dementia are more apt to hit, kick, or bite in response to feeling helpless or afraid. Ann Napolitan, who writes for caregivers.com, is all too familiar with this situation. She says, as my mom's disease progressed, So did the mood swings. She could be perfectly fine one moment, and the next she was yelling and getting physical. Often it remained a mystery as to what prompted the outburst. For her caregivers, it was often getting dressed or bathing that provoked aggression. So, here's a do: the key to responding to aggression caused by dementia is to try to identify the cause. Very important. What is the person feeling to make them behave aggressively? Once you've made sure they aren't putting themselves or anyone else in danger, you can try to shift the focus to something else, speaking in a calm, reassuring manner. And this is where truly knowing your loved one is so important, says Neapolitan. In my mom's case, she didn't like to be fussed over. If she was upset, oftentimes trying to talk to her and calm her down only served to agitate her more. Likewise, touching her, even to try and hold her hand or gently rub her arm or leg, might result in her taking a swing. The best course of action in that case was just to walk away and let her have the space she needed. So again, when she says this is where truly knowing your loved one is so important, that is part of the person-centered approach to care that we've discussed in several of Truth, Lies, and Alzheimer's episodes. The don't is, as Neapolitan— Napolitano says, "The worst thing you can do is engage in an argument or force the issue that's creating the aggression. Don't try to forcibly restrain the person unless there is absolutely no choice." Mariotto agrees with this. He says the biggest way to stop aggressive behavior is to remove the word no from your vocabulary. Here's a common situation number 2: confusion about time or place. An example statement would be, "I want to go home. This isn't my house. When are we leaving? And why are we here?" Wanting to go home is one of the most common reactions for an Alzheimer's or dementia patient living in a memory care facility. Or even at their own home or a family's home. Remember that Alzheimer's causes progressive damage to cognitive functioning, and this is what creates the confusion and memory loss. There is also a psychological component, says Mariotto. Often people are trying to get back to a place where they had more control in their lives like their homes and where they felt safe and secure. A do in this situation is as follows: There are a few possible ways to respond to questions that indicate your loved one is confused about where he or she is. Simple explanations along with photos and other tangible reminders can help. Suggests the Alzheimer's Association. Sometimes, however, it can be better to redirect the person, particularly in cases where you're in the process of moving your loved one to a facility or another location. The better solution is to say as little possible about the fact that they all have their belongings packed, and instead try to redirect them. Find another activity, go for a walk, get a snack, et cetera, says Napoleon. If they ask specific questions such as, when are we leaving? You might respond with, we can't leave until later because maybe the traffic is terrible, or the forecast is calling for bad weather. It's too late to leave tonight might be another reasonable response. But nevertheless, you have to figure out what's going on to make the person feel the safest, says Mariotto, even if that ends up being a therapeutic fib. Here's the don't. Lengthy explanations or reasons are not the way to go. You cannot reason with someone who has Alzheimer's disease or dementia, says Ann. It just can't be done. In fact, says Mariado, a lot of times we're triggering the response that we're getting because of the questions we are asking. Now, that's really something to think about. This was another familiar situation for Ann and her mother. She says, I learned this the hard way. We went through a particularly long spell where every time I came to see my mom, she would have everything packed up to go, and I mean everything. Too many times I tried to reason with her and explain that she was home, that this was her new home, inevitably things would get progressively worse. Here's common situation number 3, and it pertains to poor judgment or cognitive problems. Here's an example: an unfounded accusation, "You stole my vacuum cleaner." Trouble with math or finances, "I'm having trouble with the tip on this restaurant bill." Other examples include unexplained hoarding or stockpiling and repetition of statement or task. So, remember, the deterioration of brain cells caused by Alzheimer's disease is a particular culprit in behaviors showing poor judgment or errors in thinking. These can contribute to delusions or untrue beliefs. Some of these problems are obvious, such as when someone is hoarding household items or accuses a family member of stealing something. But some are more subtle, however, and the person may not realize that they are having trouble with things that they never used to think about twice. According to Napolitan, there came a time when I began to suspect my mom was having problems keeping financial records. In order. At that time, she was living independently and was very adamant about remaining in her house. Any discussion to the contrary, or really any comment that alluded to the fact that she may be slipping, was met with either rage or tears. These are common reactions. It was when she asked me to help her with taxes that I noticed the checking account was a mess. So here's your do in that situation. First, you'll want to assess the extent of the problem. If you're curious and don't want to ask, take a look at the heating bill, suggests Mariado. Sometimes payments are delinquent or bills aren't being paid at all. You can also flip through their checkbook and look at the math or have them figure out the tip at a restaurant. So the Alzheimer's Association says to be encouraging and reassuring if you see these changes happen. Also, you can often minimize frustration and embarrassment by offering help in small ways with staying organized. This is what Ann did for her mother. She said, as I sifted through records to complete her tax return, I gently mentioned to her noticing a couple of overdraft fees and asked if the bank had perhaps made a mistake. As we talked through it, she volunteered that she was having more and more difficulty keeping things straight, knew she had made some errors, and I asked her if she would mind me helping with the checkbook going forward. I remember her being so relieved after we talked about it. From there, over time, Ann was gradually able to gain more control over her mother's finances. And here's her don't. What you shouldn't do in this circumstance is blatantly question the person's ability to handle the situation at hand or try to argue with them them. Any response that can be interrupted— interpreted as accusatory or doubting the person's ability to handle their own affairs only serves to anger and put them on the defensive, says Anne. So, that covers our main topic. For today's show. And what I want to share with you now is our What's New segment. And today I came across some really exciting news about the new drug on the market called Lecanemab. So, guess what? The FDA, as of Friday, June 9th, 2023, so just a few days ago, FDA advisors vote that Lecanemab does benefit as an Alzheimer's treatment. This is from CNN. An advisory panel for the U.S. Food and Drug Administration voted unanimously Friday that the Alzheimer's drug Lecanemab shows clinical benefit for the treatment of the disease. This is going to pave the way for the medication to be considered for full FDA approval. A decision from the FDA is expected to be made by July 6th. Lecanemab, also sold under the brand name Lekembi, is one of the first dementia drugs that appears to actually slow the progression of cognitive decline. Now, the drug is not a cure, but works by binding to amyloid beta, which is the hallmark of Alzheimer's disease. In January, the FDA granted accelerated approval of Lekembi for people with mild cognitive impairment or mild dementia, even though there were some safety concerns due to the treatment's association with certain serious adverse events, including brain swelling and bleeding. If Lekanemob receives traditional FDA approval, the federal Centers for Medicare and Medicaid Services has said it will provide broader coverage, meaning Medicare patients could get greater access to the treatment. Woo-hoo! However, the coverage will come with some qualifications. We are in full agreement with the FDA Advisory Committee committee that Lekembi provides clinical benefits and that this benefit outweighs the risk. Now all eyes turn to CMS Dr. Joanne Pike, who's president and CEO of the Alzheimer's Association, and she said in a statement on Friday, Medicare is supposed to be a rock-solid guarantee for Americans. And it is time for CMS to step up and provide Medicare access on the day of an FDA traditional approval. Americans living with Alzheimer's disease deserve access to FDA-approved therapies without barriers, just like people with cancer, heart disease, and HIV/AIDS. What the science says about Lecanemab. On Friday, the FDA's Peripheral and Central Nervous System Drugs Advisory Committee met to discuss the results from a confirmatory Phase 3 study on the drug as drugmaker Eisai seeks full approval. At the end, members voted 6 to 0 in favor of the drug's clinical benefit. In the study, 897 participants were given a placebo and 898 were given the drug Lutonumab, administered biweekly as an intravenous infusion. And the study found that 18 months later, Lekanemab slowed disease progression by at least 26% in certain measurements according to the data that Eisai presented to the FDA advisory panel on Friday. The data also showed that 26% of participants given Lekanemab had infusion-related reactions, compared with 7% of those given a placebo. Among Lekanemab recipients, 17% had brain bleeding compared with 9% in the placebo group, and 13% had brain swelling compared with 2% given a placebo. These reactions tended to, or side effects, tended to occur early in treatment. Supporting monitor during the first 6 months of treatment, Dr. Michael Izary, Senior Vice President and Deputy Chief Clinical Officer of Alzheimer's Disease and Brain Health at Eisai, told the FDA committee on Friday. So even though they do have some things to still work out, this is one of the most promising steps forward that we have made in a treatment for Alzheimer's disease ever. So I'll keep you up to date on what's happening with Lecanemab. We're supposed to hear the FDA's decision on approving it as a drug to be used by physicians to treat Alzheimer's disease by July 6th. So I want to say thank you again for listening to the Truth, Lies Alzheimer's show. You can find this program on our website at passionateworldtalkradio.com. Just click on the shows tab, and on YouTube at @PWTR. You can find me, Lisa Skinner, on Facebook by searching for Lisa Skinner Author, and you can find my books on Amazon.com. So I look forward to hearing from— to chatting with you again next week. I'll bring you some more really insightful and valuable information. We'll be continuing our series on on how to respond to behaviors that are triggered by unknown sources, how to figure out what those are, and how to effectively respond to them. So, have a great week, everybody. Thanks again for being here. And as I always say, take care of you. Talk to you next week. Bye-bye.