Navigating the Complexities of Brain Disease

This is the Truth, Lies and Alzheimer's Show. We are brought to you by Global Media Network LLC and Passionate World Talk Radio. What is Passionate World Talk Radio? Well, it's a wholly owned subsidiary of Global Media Network LLC, and our motto is educate, enlighten, and entertain. I'm Ken Poglia, but much more importantly, I'm here to bring you our host, Alzheimer's and dementia expert, best-selling author, and world-renowned public speaker, Lisa Skinner. We've got a fantastic episode planned for you today. We'll be talking about the many surprising aspects of Alzheimer's and dementia, including many that you might not even be aware of and some that can surface out of nowhere, or at least seemingly so. Lisa will illustrate these aspects of Alzheimer's and dementia by telling you two very true and very personal stories, and then she'll explain what the stories illustrate. And with that, I'm very happy to turn it over to our host, Lisa Skinner.

Thanks, Ken. You always give me such a wonderful introduction. That's so great. Anyway, how's everybody doing today? I'm so glad to have you here with us again for another new episode of Who's Wise and Alzheimer's. And like Ken said, there are so many aspects of living with dementia that are truly unexpected and can surface out of nowhere at any time. These are the things that I refer to as being the hidden or secret faces of Alzheimer's disease. And as many of you already know, they show up unannounced and can be completely unpredictable. And that's why it's so important to be prepared for everything that emerges on this journey. One of the things that makes this disease so difficult and so complicated because there are so many moving parts to the story. There are expressions and behaviors that show up and rituals, and what a lot of people don't realize is that it's all part of the disease. A lot of people are under the misconception that There's Alzheimer's disease where people get very confused and forget things and a lot of times they don't know what they're talking about. And then there's the part where they start behaving in ways that make absolutely no sense, but tell me that, "Oh, and in addition to the Alzheimer's disease, my mom's doing this or my dad's doing that." Well, one of the things that is really important to understand is that this is all— everything that we're going to talk about in the stories tonight are all part of the disease. They don't happen to 100% of the people, but these are very common behaviors that show up with dementia. And I think it's really, really important for people to be able to recognize these things that we're going to talk about are in fact a part of the disease. So you will learn to be aware when these symptoms show up, and then eventually I'm going to offer you a lot of strategies to help with how to respond or— to some of these behaviors that we see. But the first step is to recognize that the behaviors that are very typical and very common, to watch for them, to recognize them, and know that they are truly part of the disease. So, the first story is called Birds in the Mattress. Mrs. Walker only lived a few miles from her family. So, they visited her often. When her eldest granddaughter got her driver's license, she loved to spend time with her Nana. During one of her visits, she encountered some peculiar behavior from her Nana. They were sitting in the living room having a nice conversation when Nana told her about the birds that lived in her mattress and that came out at night to peck her face, that she saw rats running along her walls and that they were planning to invade her house, and that there were men constantly trying to break into her house because they wanted to steal her jewelry and then they were going to kill her. Well, I was the granddaughter listening to these tales.— and I did not know what to think about what my grandmother was telling me. To me, they sounded so far-fetched and impossible to believe. But I adored my Nana and desperately wanted to believe that what she was telling me was real. I even led her into her bedroom one day and told her that I would check under her mattress to see how the birds were getting in and out of it. And then coming, sneaking out at night to peck her face. So, I pushed her mattress up to look underneath it, and I told her that I wasn't finding any holes or any evidence of where they could be coming in and out of. She looked me straight in the eye and said, "Oh, Lisa, they are there. There's no question about it." They're just very, very clever. Well, to me, that was a brilliant response to explain the birds away to me because obviously there was nothing there. But one of the things that people living with Alzheimer's disease become masterful at is explaining things away. Now, unbeknownst to our family, while she was alone, she was actually calling the police to report these intruders 2, 3, 4, sometimes 5 times a day. Well, the police initially sent a patrol officer out to her house to check things out, and of course, no surprise, they found no evidence of anything that she was claiming. But she continued to call them day in and day out. One day there was a knock on our door. The chief of police was there to talk to my mom about my grandmother's relentless calls to them. He said to my mom, "You need to do something with your mother," he said. "We cannot continue to take her calls." 'we don't have the time or the resources to deal with this.' And then he says, 'Your mother is an absolute nutcase.' I was standing there listening to this conversation and could not believe my ears when the chief of police called my grandmother a nutcase. He showed no concern for her safety or any consideration that maybe, just maybe, there was something wrong with her. He just rushed to a judgment that she was a nut. I was mortified, and I have never ever forgotten this day. It stays with me always. Well, at that time, I didn't know exactly what was wrong with my grandmother. I only knew that she was changing right before our eyes. Soon after that, my mother told me that my grandmother had been diagnosed with what they called back then senile dementia, which is synonymous with today's Alzheimer's disease, and the beginning of our 20-year journey of watching my grandmother decline until her death. Now, in this story, Birds in the Mattress, we explore how Mrs. Walker experienced delusions, hallucinations, and paranoia. And again, these are common behaviors that we see with dementia. You can see them displayed individually or separately as you heard in this story. Now, her belief that there were birds living in her mattress and that they came out at night and pecked at her face is an example of a hallucination, which is by definition a false sensory perception which usually manifests as hearing voices or seeing things that are not there. Now, believing that the men were going to harm or kill her, that's an example of a delusion, which is also called a false belief. Now, it would also qualify as a paranoid delusion because she believed that someone was going to harm her. And unfortunately, no amount of reasoning can talk the person experiencing a delusion out of their belief. So, we must rely on alternative strategies to manage these behaviors. Often, the most effective solution is to acknowledge what the person is concerned about, and then redirect their attention to something else. I'll go into a lot more detail about this in a future episode, because there's a lot of depth to it. Now, finally, paranoia is often seen in those suffering from dementia. According to the Alzheimer's Association, approximately 1 out of 3 Alzheimer's disease sufferers will develop paranoia or suspiciousness. And many times a person with dementia will misplace belongings and accuse someone else of taking it because they cannot remember where they hid something. Now, because people with brain disease suffer from impaired reasoning, they may easily misinterpret others' intentions and have difficulty understanding what is being communicated to them. Their ability to separate fact from fiction may also become impaired. Additionally, problems with memory and misperception can generate suspicious and paranoid thoughts, like we heard in Birds in the Mattress, where Mrs. Walker believed people wanted to harm her. In a person living with dementia, the ability to perceive things the same way we do when we have a healthy brain will affect that person's judgment both visually and conceptually. Their level of confusion increases over time because they're losing their ability to make sense of what their senses are taking in. So consequently, this can produce several adverse reactions such as fright and combative behavior, hallucinations, paranoia, and delusions can sometimes be managed with behavior management therapies, and that's what I'm going to go into more details with you about in another episode. However, extreme psychotic symptoms may require medication therapy as well, like I talked about on a previous episode when I was discussing frontotemporal dementia. That is one exception to where medications may be needed to manage the behaviors that come out with that form of dementia. So, that was our first story. Our second story— is called "Sundowning." Every night at approximately 5:00 PM, Jack telephoned his son, Steve, to say, "You have to take me to find the house." When he called, Jack always sounded a bit panicky, but Steve had no clue which house his dad was referring to. When he asked his dad which house he needed to go to, all Jack would say was, "You know, you know, you know, my house." This new behavior alarmed and concerned Jack's daughter, Alice, but Steve dismissed it as his dad just being a bit confused from time to time. But other than that, he thought he was perfectly okay. Alice begged to differ. She had been researching the symptoms of Alzheimer's disease and explained to her brother that the agitation and confusion with their dad that he had been exhibiting every night right about the same time was consistent with what she read on what's called sundowning. She also researched local elder care facilities and told Steve that living in one could possibly improve their father's quality of life, but Steve would not listen. Now, his dad, who had been born during the Great Depression, had been placed in an orphanage when he was only 8 years old. So, for men of Jack's era, institutionalization was synonymous with abandonment. In fact, Jack had once told his son, "I'd rather have you put a gun to my head and pull the trigger than put me in one of those places." That's how strongly opposed he was to going into one. So Steve remained adamant. "I know how to take care of my father," he insisted to Alice. But the sundowning behaviors only got worse. Steve started to receive calls from the manager of a local Hooters restaurant who complained that his dad was frequently coming into the restaurant and asking out the young servers. He told Steve that he was behaving like a young Romeo and that he must insist that he keep his dad from coming into the restaurant, that his behavior was totally inappropriate for his age. After the fourth call from the Hooters manager, Alice brought up the subject of looking into moving their dad into a facility where he could be properly cared for. Well, Steve remained stubbornly opposed. Dad doesn't need to go into a nursing home. I'll just keep setting him straight. Well, Alice went ahead and found an opening at a local memory care facility. However, Steve believed his dad belonged in a less restrictive assisted living environment because he saw his dad as being so much higher functioning than the residents appeared to be in the memory care unit. "I can't put my dad in there with all those crazies. He'll die," said Steve. The elder care facility's administrator insisted that moving him into memory care was definitely the right placement for Jack. It wasn't until Jack went missing for 2 days and police officers found him sleeping in his car in the Hooters parking lot that Jack finally conceded to moving his dad to the memory care neighborhood on a trial basis. When they visited him 2 weeks later, Steve and Alice were pleasantly surprised to hear how well their dad was adjusting to life in the memory care unit. In fact, during their visit, Steve and Alice found that Jack was so engaged in the facility's arts and crafts activity that he barely acknowledged their presence. Through conversations with the staff, they also learned that the house, that Jack was trying to find was the home he lived in with his mother before going to the orphanage. Jack no longer talked about needing to find the house. He now bragged about his new position at his new home. He told his kids that now he had a job sweeping the back patio, which he proudly did every night right at 5:00. 5:00 PM. Now, we've been talking about what's called sundowning. And the story that I just read to you illustrates a great example of behaviors that happen when somebody is going through this sundowning phase. Sundowning refers to a set of behaviors in which the person with dementia is disoriented and confused, typically occurring at the end of the day, although the behaviors can actually occur at any time. The person suffering from sundowning can experience dramatic changes in their personality and in their behaviors, including pacing, wandering, suspiciousness, disorientation, confusion, and agitation. The person may become demanding and combative or yell out and scream for no apparent reason. The causes and triggers of sundowning are not clearly understood. Sundowning also can cause a variety of behaviors such as confusion, anxiety, aggression, or completely ignoring directions, like stay out of Hooters. Some of the things that we heard in our sundowning example. Another common behavior illustrated in our sundowning story is called elopement. Elopement is different from wandering, which we will hear about in another story. They typically seek to exit their current environment and have a purpose or agenda to get somewhere. A person exhibiting sundowning behaviors can be relentless in their pursuit of what they are looking for. They may even believe they are being kept against their will and may become very angry, anxious, and even aggressive. Now, the most important thing to recognize about sundowning is that the behaviors and symptoms are part of the disease and not the intentional behavior of the person. The behaviors displayed when a person is sundowning can usually be effectively managed with a learned set of skills, which we're going to explore. In a person with a healthy brain, all thinking powers like memory and reasoning are working together to define the world a person understands, allowing that person to function effectively in that world. But in people suffering from dementia, all those powers of thought shrink, creating a world that becomes increasingly overwhelming and less able to make sense of. Therefore, the person unfortunately loses their knowledge of how to handle situations and reacts based on how a particular situation affects them emotionally. And this is where you see the agitation and anxiety and fear coupled with aggression and anger, and these are all examples of some of the common behaviors that will surface when a person with dementia is sundowning. So, that a realistic true story of a case of a man who pretty much went through a sundowning period every night right about 5 o'clock. The times vary person to person, as I mentioned. And then I explained a little bit more in depth what to look for when somebody is experiencing this sundowning process. So, I am going to turn the mic back over to Ken. I will tell you that I will be sharing many more real-life stories from my experiences working in memory care units and assisted living, working with families, all the support groups I've led. Because I have really found that they are truly the best way for people to relate to the consequences of Alzheimer's disease and dementia. So, Ken, you can take it from here.

Thank you for listening to the Truth, Lies Alzheimer's show with your host, Lisa Skinner. This program can be found on our website, passionateworldtalkradio.com, under the shows tab. It can also be found on YouTube under /passionateworldtalkradio. If you're on Facebook, check us out under Lisa Skinner Author. That's Lisa Skinner Author. And if you want to find out more about Lisa Skinner or purchase her book, go to truthliesalzheimers.com, and we really recommend the audiobook. With that, Lisa, great stories tonight. I always learn something when I hear you tell these stories, and take us home.

Okay, thanks again, Kent. One thing that I always want to emphasize, so I'm going to say it again today, remember dementia awareness happens every day, and kindness is the ability to speak with love Listen with compassion and act with patience. These are all very necessary attributes to have in order for all of us to live through this disease. I want to thank you again for listening again today. I appreciate you taking the valuable time out of your day to listen what I have to share with you about living with Alzheimer's disease, and I, of course, Look forward to next week when I'll share with you more stories and more information that hopefully will help you have an easier time if you're on this journey of Alzheimer's disease. Thanks again.