In the latest episode of Truth, Lies & Alzheimer's, host Lisa Skinner discusses several surprising elements of brain disease which may seem to surface out of nowhere. Some listeners may not even be aware that these elements exist. Lisa explains why she refers to them as the "hidden or secret faces" of brain disease. She then tells two deeply personal stories and explains how each story illustrates a surprising behavior.

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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How's everybody doing today? I'm so glad to have you here with us again for another new episode of Truth Lies and Alzheimer's. And 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 is 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 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 the 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 matrix. 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 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. So. 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 it's explaining things away. Now, unbeknownst to our family, while she was alone, she was actually calling the police to report these intruders, 234, sometimes five 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 nut case. I was standing there listening to this conversation and could not believe my ears when the chief of police called My grandmother a nut case, 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 eye. 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 of 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 steps to it

now. Finally, paranoia is often seen in no suffering from dementia. According to the Alzheimer's Association, approximately one out of three, 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 the. 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 facts 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 it 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 5pm 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. It 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. He 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 eight 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, Alex went ahead and found an opening at a local memory care facility. However, Steve believed his dad belonged in a less respect. Directive 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 facilities administrator insisted that moving him into memory care was definitely the right placement for Jack. It wasn't until Jack went missing for two 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 two 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 visits, Steve and Alice found that Jack was so engaged in the facilities, 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, but now he had a job sweeping the back patio, which he proudly did every night right at 5pm 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 behavior 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 react 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 is a realistic true story of a case of a man who pretty much went through a sundowning period every night right about five o'clock, the time 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 will tell you that I will be sharing many more real life stories from my experiences working in memory care units, in 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. 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.