Episode 84
Behavioral Triggers – What Every Caregiver Needs to Know
Behavioral expressions we see with dementia typically have an underlying reason. It’s a person’s way of trying to communicate an unmet want or need to us when they are no longer able to articulate them to us. It’s important to recognize the myriad of symptoms and behaviors in order to understand that are are trying to communicate with us in the only way they know how. In today’s episode, Lisa dives deep into what many of the common triggers are that typically the basis of these behaviors. Don’t miss this very important episode!
We explore environmental triggers,
Physical Triggers, Mental Triggers,
Recommendations for diffusing behavioral expressions and creating a calm environment.
About the Host:
Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.
Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.
So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.
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Transcript
Lisa, Hi everybody. Welcome to a brand new episode of the truth, lies and Alzheimer show. I'm Lisa Skinner, your host, and as promised, today I'm going to dive into behavioral triggers. Now I have shared with you over a two episode period, the glossary of behaviors and symptoms and signs that you should be aware of, and now I'm going to share with you what triggers those behaviors, symptoms and signs that we see so commonly in people living with dementia. And this is also going to be a series of several episodes, because there's a lot of information to cover here, and I'm probably not going to do it every single week. I'm going to sprinkle it in to along with some of my other episodes. So these are really things that all caregivers and family members really need to know, is what is behind, what's the underlying cause of these behavioral expressions that we see so often? And so the first thing I'm going to share with you are environmental triggers. So what you want to do, to be as proactive as possible, is the environment should be as simple as as you can possibly make it, but make changes gradually. And the goal of this is to reduce the stimulation that can trigger behavioral and emotional expressions. So some of the suggestions I have for you is avoid having more than one source of noise going on at any time. For example, you don't want music blaring and a TV go on at the same time and pay attention to traffic noise, because that actually can trigger behavioral expressions, who to thump right decrease the clutter and keep their environment simple, simple, simple. We also have physical triggers, so some of the things that you want to pay attention to, because keep in mind, and I've I've said this many, many times, these behavioral expressions are a person living with dementia's way of trying to tell you something. They have a want, they have a need, they're in pain, they're uncomfortable, and it's really up to us to be able to put our Sherlock Holmes hats on and figure out what it is they're trying to tell us because they cannot articulate those wants or needs to us anymore at some point. So they manifest in the form of behaviors, anger, anxiety, yelling, you know, all the things that we see in people living with dementia. So one of the things that can trigger a physical response are recent medication changes. Now side effects of these medications can cause mood swings, or it's possible that they're just simply not tolerating the medications. So if that's something that has recently changed in them, and now you're seeing a change in their demeanor, then that could be the cause of this physical trigger. Watch for body language, showing signs of increased discomfort, such as restlessness, fidgeting, blushing is a common symptom, and pacing back and forth. Now physical discomfort can also cause anger, so you want to figure out, if they're in pain, are they constipated or hungry? Do they need to use the bathroom? Are they too hot? Are they too cold? Do their clothes fit properly? Fatigue can make them more susceptible to frustration and anger. And one thing I want to mention about being too hot or too cold when we're older adults, our bodies lose the capacity to regulate our internal temperatures, so even though you may feel completely. Comfortable in that environment. They may be hot or they may be cold. They also have a tendency to put multiple layers of clothing on. So check all these things and then simplify tasks that you do with them or are doing for them again, decrease noise, and then we're going to take a look at some of the mental triggers. Don't focus on what they can no longer do. Learn to accept their current abilities. Avoid reminding the person of who they used to be, because that can be very upsetting. Oh, Mom, don't you remember you used to love to put puzzles together? Well, first of all, she might not remember, and second of all, that might be a direct reminder to her that she doesn't have the cognitive abilities that she once had. So avoid saying things like that. And then this is really important, is giving them limited choices. And this is from food choices, snack choices, activity choices, clothing choices, one or two options is the limit, because it's too confusing for them to sit there and think about what it is they want, and it's just way too much information for them to process. So you can provide verbal cues. For example, Hey, Mom, it's Lisa, and don't ask if they know who you are. Don't say, Hey Mom, it's Lisa. You know your daughter. She might not remember that you're her daughter, especially if that on off short term memory switch flips off for that time being, she might think you're a friend or a neighbor or a school chum. So keep it simple and concise and just say, as a matter of fact, you might not even say Mom, because she might not know she's your mom. So in terms of following their verbal cues, you might say, Hi Shirley, it's Lisa. I'm here to visit with you today, and if she volunteers the information that she recognizes you as her daughter, then you're golden. Then you can just continue on with her, with your relationship as her daughter, if she does not identify you as her daughter, but maybe somebody else that was in her life at a previous time frame, then just go along with that. Don't ask them if they know who you are, because that absolutely puts a burden on them, and you want to take those burdens off of them, so don't like set them up for failure. Break down any task into very small steps. Now that might seem really rudimentary to us, but to them, it's about as much as they can process. And the goal of any task that we do or activity that we do with our loved ones or the people we're caring for who live with dementia is to set them up for success, regardless of how simple that task is for them, give them adequate time to accomplish a task or an activity. I know patience is easier said than done with Alzheimer's disease and related dementia, but it's critical to creating in a successful experience for you and for them. So one of the recommendations I have is to plan some of the more difficult tasks for the time of day when they are at their best, because you'll minimize the risk of them becoming frustrated or angry or one of the other emotions they might display, and then always offer positive reinforcement. So here's an example. After your shower, we will have some ice cream, and make sure you follow through with giving him or her that ice cream you want them to trust. You don't announce your intentions ahead of time. For example,
Lisa Skinner:you can go for a walk through the house or building and stop by the bathroom. You don't have to structure everything you do. You. Don't talk about them as if they weren't in the room. They are paying attention, and they are more aware of what you are saying to them and doing than you realize. Include them. So they know that if they want to be involved in the conversation, to voice an opinion to ask in a question, you a question that they are more than welcome to do that now, misinterpreting conversations that you're having with people living with dementia can be very upsetting because, remember, they're not processing the information the way they did when their brains were healthy. If you have a guest come over, if you bring a friend or another relative, make sure you identify the other people that you bring with you. Hi, Shirley, it's Lisa. I'm here to visit with you today, and I brought my friend Christopher. Now, Christopher could be her grandson, but again, if she identifies Christopher as her grandson, then you know that she is lucid to the same reality that you are at that given time, but listen for their cues, because if she says, Oh, hi, Christopher, it's nice to meet you. How do you know Lisa? Then you're going to know that she doesn't recognize Christopher as your grandson, and you're going to follow that queue, don't assume they will remember if you told them previously, because the chances are they probably will not, even if you said it five minutes earlier. So tell them at that very moment. And one of the things that we really want to try not to do. And we're all guilty of it. I'm guilty of it because it's just so easy to say, Oh, Mom, don't you remember blah, blah, blah, blah, blah, so try to remove those words from your vocabulary, it reminds them that they have a problem, and anger frightens them. If they feel angry, that actually frightens them. If you're angry with someone or something, stay away and don't try to accomplish difficult tasks until you personally have had a chance to come Calm down, remove yourself from the same room that they're in. Go calm yourself down, count to 10, do some jumping jacks, and then try to come back and regain wherever it was you were in what you were doing, because they absorb your moods and emotions, and they may emulate it. So if you're displaying anger, that might cause them to feel angry, if you're feeling anxious, that very well could cause them to feel anxious, they do emulate your emotions. So here are some hints for handling stressful times. During stressful times, you can share an activity together that you both enjoy and find relaxing. So if you know what the person that you're caring for or your loved one enjoy doing before the their dementia, you can consider doing something together, like cooking or making cookies and eating them. Do you both enjoy sipping on a cup of tea and listening to music, but avoid arguing you won't win, because they know that they can't, that they will win any situation like that, because once they decide in a belief, they're going to grab onto that and hold on to it for dear life until they don't. And unfortunately, there's really nothing we can do or say to change that false belief. False Belief being that they don't know that you're the daughter they think you're the neighbor. They think your grandson is somebody that they knew from their old neighborhood, and there's nothing you can do or say to change that belief. Trust me on that one. So just go along with it. That. The easiest thing to do, plan personally meaningful activities and offer them when their agitation increases to calm them back down. You can say something like, come on with me. May work better than an explanation. Just hold out your hand and say, Come on with me. Extend your hand and smile. Smile is the greatest gift you can give to somebody living with dementia, to get them to join you. Now, dementia can easily make a person feel foolish and scared. One of the first noticeable signs of dementia is a change in personality, and part of this is due to the chemical changes that are happening in the brain. Another part is due to the loss of ability to analyze their environment around them. We act the way we do because we're taking cues from the people and the events that are surrounding us with Alzheimer's disease, learned behavior we acquire as we grow up is systematically erased, we can actually track it in The reverse order that we learned it so with dementia, they are following a reverse path of human development, their development. But it's not like running a movie backward with all the pieces intact in a sequential reverse order. Their memories are being erased, good and bad, and their development into adulthood is slowly but surely fading away. The behaviors of a person will exhibit are what someone at that age would do, but not necessarily what they did at that age. It's not reflective of of their personality or their beliefs, but it would be synonymous with the age that in their mind they are living at at that moment, if that makes sense, this is where knowing details about their past will be so invaluable for you. For example, did your dad grow up during the prep during the depression and have to go without food? So what you want to do is keep plenty of food around for them to see that it is there and available for them. I can tell you, my dad grew up during the Depression, Food and Jobs were very scarce for his parents. They went without many, many, many things in his dementia, he may have felt compelled to hoard food, because in his mind, maybe he was back reliving that period of his life, and he's going to hold on to anything he can get his hands on so he doesn't go hungry or lose it. This is a very common thing that could happen, were they abused? So Avoid loud noises, startling noises, or anger displays. We talked about that a few minutes ago. During moments of fear and paranoia. There are several tips and techniques which can alleviate the situation for the person and for you. So try one of the techniques that you may learn from this broadcast. And what you want to do with every strategy, with every tip, with every technique, is you want to assemble a toolbox for yourself, and the reason why is because not every
Lisa Skinner:technique will work in every situation, even if it's the same situation. So if they're having a meltdown about something and you tried, you know, a bowl of ice cream, and that calmed him down. The next time that meltdown happens, you try the ice cream that might not work that time. So the advantage to you having other things to fall back on will just get empower you. It'll give you your superpowers to pull something else out of your toolbox to try and the more things that you have in your toolbox, the better success you will have of finding something that will diffuse the situation. What works one day might not work the next and what. For one situation might not work for that exact situation if it happens on a different day or time. Now, one of the things that I strongly recommend is to make lists of what you have tried and under what circumstances. These lists will be helpful in assembling your toolbox and also identifying patterns of triggers that bring out these emotions, bring out these behavioral expressions and responses from them. So here are some general guidelines for caregivers. I mentioned this a little while ago. A smile is one of the greatest gifts you can offer a person living with dementia. It can calm them and completely change an entire situation they emulate our emotions. It may also surprise them enough to distract them. You always want to try to keep a sense of humor even in the most difficult situations, humor will help you cope with the frustration and remember to laugh with them, but not at them. If you're finding something is humorous that could change their whole demeanor on a dime, always approach a person with dementia from the front and in a non threatening way. They do not like to be snuck up on. They do not like to be caught off guard, so you always, in addition to approaching from the front, you want to keep your arms at your side and not behind your back or in your pockets, because they could be suspicious that you're up to something or have something that you're hiding from them, position your palms forward so they can see that you don't have anything to hide and smile. Think ahead, plan for situations that could upset them, and eventually you will know the things that do upset them. So it does get easier as you get to as you identify these patterns of responses from them, and through the process of elimination of things that maybe at first you had to go through this great big, huge, long checklist of things that to look for that could have triggered that response or that behavior. But the more you understand what scares them, what frightens them, what triggers anxiety, then it's going to be easier evaluate the environment, anything can be perceived as frightening to people who live with dementia. If you don't know what it is, then hopefully you can identify something that may be obvious that upset them. Did you know that shadows can be very disturbing and distorting to people living with dementia? Most people probably wouldn't think of that, but it's true, it's a huge trigger of emotional responses if a particular situation becomes overwhelming, remove the confused person, take them to another room, or cut an outing short, if necessary, ask guests to leave, even if it's just to go into another room temporarily and try coming back, because we just don't know what caused the response. Take time to explain to others that suspicious accusations are part of the disease and that they may be accused of stealing their belongings respond to the emotion or feelings behind the accusation. If it involves hurt or the death of someone who has passed away, try saying, I can see you really miss your mom. Tell me more about her. She sounds like a wonderful that she was a wonderful woman, and get them talking that's comforting to people to talk about, people that they've lost. Look beyond the insult to the underlying message that they are trying to tell you if they ask, why are you trying to starve me to. It might be their way of telling you that they're actually hungry. They might say to you, Don't lock me up. Now, that could mean I can't find my way out of here. I'm trying to go home, but you've got me locked in. I can't find my way out. So don't take every and anything they say 100% literally, because it might just be a convoluted way of them trying to tell you something else. And don't get defensive if they accuse you of things you didn't do. I've had so many family members tell me it just hurt. It stung so bad when my mom accused me of stealing her jewelry and taking it down to the pawn shop and hocking it. Doesn't she know that I would never do something like that. No, she doesn't. And everything to them, they're pretty much suspicious about because they're not processing things the way they used to. They can't rationalize anymore. They can't reason things out. The world does not make sense to people who live with dementia anymore. Remember, they are not purposely being malicious. They simply cannot sort out their world with cognitive impairment that makes sense to them the way it did when their brains were healthy. So I am going to conclude this episode here. I don't want to completely overwhelm you with information. This is a lot to take in. I want you to digest this and maybe write some of these things down so you can have them as your tools to use for any situation that comes up. But I will be sharing with you a lot more of what triggers these behavioral responses and personality changes in segments, so it's not so completely overwhelming in one short period of time. So I will be back next week with another brand new episode of the truth lies in Alzheimer's. We do have a special guest who will be joining us, and his name is, let me get it here for you. He's an oncologist, and his name is Dr Wolfgang spangenberger, and he has recently written a book called A Long Way help for long term care. So I'm really looking forward and exciting to Dr spanglenberger being with us next Wednesday, and I look forward to all of you joining us for that episode, and then I will pick this up probably the following week with more things that all caregivers and family members really need to know in your dementia world. So thanks for being here. Appreciate you very much. Have a wonderful rest of your week. A great weekend, and I look forward to having you back next week. Thanks.