Embracing Echoes: Nurturing Minds Affected by Alzheimer's & Dementia

KANDIDLY KRISTINHey podcast nation, it is your girl Kandidly  Kristin and this is the Kandid Shop. Your number one destination for kandid conversations. If you're a new listener, welcome. If you're a regular listener, welcome back and thank you so much for your support. So today I am sitting down at long last with behavioral specialist, certified dementia trainer, certified dementia practitioner, and author of "not all who wander need be lost" ,  "the truth lies in alzheimer's it's secret faces" miss lisa skinner welcome welcome welcome lisa to the kandid shop

LISA SKINNER: Thank you, Kristin. It's so wonderful to be here. We've had a few snags between all this. 

KANDIDLY KRISTIN: Yes, we have.

LISA SKINNER: We made it. We're here.

KANDIDLY KRISTIN: We made it. So Lisa, I mentioned to you earlier that In my opinion, Alzheimer's, dementia are the most insidious diseases because they take your cognition, your memories. So I am so excited to have this chat with you today to try to help anyone who is affected directly or indirectly by Alzheimer's or dementia and to give them some information and some hope. That is my goal.

LISA SKINNER: Well, it's my goal, too. And I've been doing this for 30 years now professionally. But my experience with Alzheimer's disease actually started with my grandmother. And that was about 50 years ago. I was a teenager. I visited her regularly because she only lived a couple of miles from our home. And this is the day that I think had such a dramatic impact on me as, you know, a teenager. I went to visit her. I went by myself because I had just gotten my driver's license and I went into her living room and we're just going to sit down and kind of have a catch up conversation. And out of nowhere, she started telling me about these birds that lived in her mattress. and come out at night and peck at her face. Oh, and she couldn't stop them. And then she pointed to her living room walls and said, Oh, you see all those rats running around? They're invading my house. Oh, no. She told me about these men that were have been breaking in and they were stealing her jewelry. And that she knew they were going to kill her. And I'm sitting there, just my jaw was, had dropped to the floor. And I was just, couldn't believe I was hearing these stories. I mean, I had to tell my grandmother to make things up or And I didn't know where this was coming from because I really hadn't noticed these behaviors before. It kind of came on suddenly, but it really doesn't come on then suddenly. I think maybe I was just there when she was having these delusions and hallucinations. I didn't quite know how to respond, but out of respect for my grandmother, because I grew up being taught that you respect your elders, you don't dick them, you don't argue with them and respected that. I get just thinking on my feet, I said, Oh, grandma, I would really be interested to see where these birds are living in your mattress. Can you show me? So we walked into her bedroom and I, you know, pulled back the covers, the mattress up and looked underneath it. And I sent to her. So I'm not really seeing where these birds are able to come in and out of your mattress. Can you show me? And she looks me straight in the eye and she just brilliantly says to me, Oh, Lisa, they're there. They're just very, very clever. And it was such a classic response. And then of course, you know, doing this professionally for the last three decades. I have come to, to learn myself that people who… live with Alzheimer's disease, half delusions, half hallucinations. They become masterful at covering up their stories. So they're so believable. Right. And then I found out I went home and kind of confronted my mother. Oh yeah. Grandma has what they call back that senile dementia. What happened was. She was calling the police three times a day and reporting the birds or reporting the men and reporting rats. And a couple of times they sent a patrolman out to check things out. Of course, they didn't find any evidence of her claim. And one day we were at home and there was a knock on the door. And it was the chief of police from the local police department. I lived in a small town and the chief of police said, are you so and so's daughter? And my mom said, yes. She says, well, I'm here to tell you really need to do something with her. She is a nutcase and she continues to call the precinct. three, four, five, six times a day. Lady, we just don't have the resources to continue to manage these calls, to send people out. She is relentless and you really need to do something with her. When she, when he called my grandmother, uh, That just really, really, I felt so incensed because here I am, 16 years old, My belief was that the police were there to help you, to protect you. And he didn't even once say to my mom, is there something going on that maybe we should know about? Has she seen a doctor? He just said, great case. This has been very common. Since I've been doing this professionally, I ended up going and doing this as a professional career, and I think part of it was the impact that this experience had on me at such a young age. And I have not really seen a whole lot change, believe it or not, since that incident.

KANDIDLY KRISTIN: I just wanted to first, and thank you for that, because that was one of the things I was going to ask you, what led you to do this work, and it's really clear now. And it'll become more clear to my listeners when you tell a little bit more about your, how many connections you had to Alzheimer's and dementia. diagnoses, but anybody that listens to this show knows I'm a stat person. I love, love, love stat. So I found this 2023 report by the Alzheimer's Association that says that worldwide, 55 million people are living with Alzheimer's and other dementias. And in the US, an estimated 6.7 million people age 65 or older are living with Alzheimer's dementia. of the US population, like one in nine people has Alzheimer's dementia. So that's a huge number. And we talked a little bit about that before. But I'd like to kind of, I'm going to give a broad definition for Alzheimer's. And then I'm going to ask you, because you are the expert, to kind of drill down so that people understand the differences. Alzheimer's and dementia terms are often misused. So, broad definition, Alzheimer's disease is a genetic brain disease in the most common form of dementia. Dementia is not a specific disease, it's an overall term that describes a group of symptoms. So, that's a really broad definition. Could you explain differences between Alzheimer's, the other forms of dementia, or myself and my audience who often am confused by the terminology. And if you want to comment on the stats, please do. Okay.

LISA SKINNER: I sure can. I am asked this question all the time and I have come up with hopefully an explanation that people can really wrap their head around and relate to. So let me explain it to you this way. Alzheimer's disease is a brain disease and it is one of about 200 brain diseases that cause dementia. So when the term dementia is being used, We're really using it as a broad term, an umbrella term that refers to the symptoms, the behaviors, the signs that are associated with these brain diseases. And the reason why they kind of fall into the bucket of dementia is because The symptoms of each brain disease vary a little bit, but they're also, there's a lot of overlap in the symptoms and the signs and the behaviors. You know, a lot of the brain diseases do cause hallucinations like my, we saw with my grandma and delusions like we saw with my grandma, but not everybody suffers from those behaviors or symptoms. So think of it this way. And I think this, this really resonates with people. When we are experiencing cold symptoms or flu symptoms or COVID symptoms, a lot of us really in the beginning of the illness can't tell what it is. We don't know the difference because they're just so similar now. So we might go to the doctor and say, okay, I have been experienced a fever. I have body aches and chills. I have a splitting headache. So you're describing your symptoms to your physician based on the way you're feeling. Think of those symptoms. at, and they fall under the category of dementia and you're relying on your doctor to tell you, okay, it sounds like you have a cold. Sounds like let's test you for COVID. Let's test you for the flu. And hopefully we'll be able to pinpoint why you're not, you're feeling the way you are. So when, so just like COVID and a cold and the flu. cause you to experience these, this variety of symptoms. So do these brain diseases. So it's, it's Alzheimer's, it's frontotemporal lobe dementia, it's Lewy body disease that are causing the symptoms. They're creating the symptoms that you're experiencing. but those symptoms we put into this bucket called dementia. So really when you use the term dementia, you're really referring to the symptoms that either you're seeing your loved one experiencing or the way you're feeling yourself. Does that make sense?

KANDIDLY KRISTIN: Is that clear? Definitely does.

LISA SKINNER: It definitely does. Oh, terrific. Yeah. I have found that. When I explain it that way, people go kind of the light bulb comes on. Yeah, it's like, okay. Yeah. But to respond to your statistics, I'm a statistic person too. So right there with you, the statistics that you quoted are the current statistics for your brain. for both the Alzheimer's Association and the World Health Organization. Now, you quoted the 2.7 million Americans that suffer and 55 million people worldwide. Now to kind of piggyback on what I was saying, just describing dementia versus Alzheimer's, those numbers are only referring to Alzheimer's disease and it's not including the 200 other brain diseases that cause dementia. It's only including Alzheimer's disease. And the other thing I think it's really important for people to know because they're compelling statistics. In the US, Alzheimer's disease is the sixth leading cause of death in seniors. But in the UK, in Finland, and in the Netherlands, it's the number one cause of death in seniors today. And these numbers have been projected to triple between now and the year 2050 because A lot of reasons. The primary reason is because of the aging of the baby boomers. And we are such a huge population, the largest population of humans ever to live this long. So I really look at this as the next world health crisis, the tsunami on its way. And from my point of view, because I do this every single day,

KANDIDLY KRISTIN: Yeah.

LISA SKINNER: We as a society are not prepared for this in any way, shape, or form. And I really think that It's even more important to raise awareness about the disease so people will know what to look for, what to expect, how to manage it, how to provide a person who's living with Alzheimer's disease or one of the other brain diseases with a meaningful, purposeful life. Because you and I talked about this before you opened up the show, that there are so many myths and so many statements to this disease and is primarily a reason why people are so afraid of it. And to be honest with you, I don't blame people for being afraid of this disease, this disease, family members.

KANDIDLY KRISTIN: Wow.

LISA SKINNER: Three of them were through marriage. My mother-in-law was one of them, but five of them were blood relatives. So that puts me at a much higher risk of developing Alzheimer's disease later in life than people who don't have the family connection.

KANDIDLY KRISTIN: And the myth, the comment about myths is actually an awesome segue into what I wanted to ask. And that is what, what are some of the common misconceptions, myth about Alzheimer's and dementia that you encounter and how do you, how do you address them as somebody who does poor living?

LISA SKINNER: Probably the biggest myth. The most common one and the most feared one is if and when a person gets an Alzheimer's diagnosis, it basically means, okay, your life is over and you might as well get your affairs in order because you're dead. Well, you'll live longer because this is a, a disease that has a course of an average of eight to 20 years for people. It's a long time to live with a disease that's we gets worse and worse and worse. And it's a very long time. And it has a huge impact on everybody involved. Like you said earlier, this is very, very true. And most people want to maintain. a quality relationship with their loved one, or if you're caring for somebody that lives with a brain disease, it's a very difficult job. There are so many challenges that come unexpectedly, minute by minute, hour by hour, day by day. So what I emphasize to people, because this is what I've noticed, and I think the key to really Managing living with these diseases is to know as much as you can about it, what to expect. And I've been told by thousands of family members over the years that you get your diagnosis and that's about it. It was the number one concern of that surfaced out of the 2022 world Alzheimer's report. that doctors would give a diagnosis or medical professionals, and then basically leave the patients and the family members just kind of trying to, to find resources. Right. Right. learn about it and they were finding that very difficult and very frustrating. So the World Alzheimer's Association actually was going to make that their number one focus for 2023 is to kind of educate. Yeah. uh, medical professionals better about how to deliver this news to people. And then, you know, at least provide them with some resources, what to look for, what to expect, let them know that it's progressive degenerative disease, that there is no cure, there is no treatment. And, you know, you need to prepare yourself for watching your loved one. decline in these ways and they're not doing that. And a lot of the reason that came out for why they're not doing that is because it takes a lot of time. Yeah. And it's a lot more work. Yeah. So I think they just find it's easier to say, okay, well, by process of elimination, because there is no definitive test to diagnose Alzheimer's disease. So through process of elimination, they figure out what it's not. Yeah. The conditions and and and the illnesses that you can test for. And then if it's if they eliminate what it's not, then a lot of times they'll circle back and say, OK, my best guess, my best estimate Yes, that this is Alzheimer's disease or something else because really right now the only way to definitively diagnose Alzheimer's disease is upon a brain autopsy. Right.

KANDIDLY KRISTIN: Yeah. Yeah. And we know when autopsies are done.

LISA SKINNER: That's one big mess. Another one is that this only affects older people. Now the traditional form of Alzheimer's disease, which is the most common, it's the one that the statistics are being quoted.

KANDIDLY KRISTIN: Yeah.

LISA SKINNER: Does typically show up after the age of 65 and beyond. And every five years after a person turns 65, the chances of developing it increases pretty substantially. Now there is another form of Alzheimer's disease called early onset, and this strikes people, um, younger than 65 and that seems to be coming more and more. comet that we're seeing more cases of early onset than we ever have. And so it's not exclusive to older people. Right. I know a lot of people who's. took care of their husbands and they were diagnosed with early onset, like in their forties or fifties. And that's very unusual for, that's scary. So people do carry a gene that's called the. APOE4 gene, but even if you, and there is a test for the gene, whether that you carry one or two, if you have one gene, that means you got it from one of your parents. If you have two gene, that means you're carrying from both parents. Now, does that mean that you will develop Alzheimer's disease? No. It means that you are at a higher risk of developing Alzheimer's disease than if you were not carrying one or two of the APOE4G.

KANDIDLY KRISTIN: This is amazing. So what finds should the general public be aware of? if they suspect that their loved one, or themselves even, might be experiencing some cognitive declines, some early signs of dementia, what signs should they be looking for, and what steps can be taken?

LISA SKINNER: Well, that's another aspect of why this disease is so difficult. And I'll explain the reason why. There are kind of three different categories of cognitive decline that we experience in our lives. The first one is what we call the normal aging process. And as we age, we start forgetting things. Our brains are not as sharp as they were 20, 30 years earlier. This is kind of the classic story of you always misplacing your keys and you can't find your glasses because they're sitting on top of your head. And, you know, a couple of weeks ago I walked into my kitchen and for the life of me, I could not remember why I walked in there. Is this all sounding familiar? This is normal aging forgetfulness.

KANDIDLY KRISTIN: Yeah.

LISA SKINNER: The next stage is what is called mild cognitive impairment. And that is a step a little bit more severe than just forgetting your keys, where your keys are and appointments. And, you know, people's names kind of flying out of your head, just you're about to say, and yeah, now mild cognitive impairment can progress into Alzheimer's disease. And a lot of times it does, but it doesn't necessarily in all people, they stay in the mild cognitive impairment. So they're more. Cognitively impaired than if it's just the normal aging forgetfulness situation, but it stops before really starts to, to impact their daily lives. So. These are some, and, and the other thing that makes it difficult is most people today are not diagnosed. And I use that term loosely because they don't have a definitive way to diagnose it. Right. But the doctors typically don't start doing the testing or going through this process of elimination until a person is well into their mid-stage of the disease because that is when it becomes blatantly obvious that there is more going on here than misplacing your keys or You know, some of the milder symptoms that people experience in this other stage called mild cognitive impairment, but they're still fully functional. So some of the things that I bring people's awareness to. is if your cognitive decline is really become obvious to your family members, to your friends, where it's really having a huge impact on your activities of daily living, then it's probably something more serious than normal aging, forgetfulness, or even mild cognitive impairment. So to give you an example, using like misplacing the keys, which happens frequently. I mean, our lives are busy. We, there's so much noise out there and so much information being thrown at us from every direction that it's no wonder that we can't remember where we put our keys down. Here's a big difference. You misplace your keys. And let's say your son is over visiting you and he finds them in the cookie junk and he hands them to you and you take the keys and you look at them and you say to your son, I have no idea what I'm supposed to do with these. Don't connect that those keys go to your house, to your car. You cannot remember the function of. the keys, you go into the kitchen like you've been doing for decades and you push the button on your coffee maker to start brewing your coffee that you set up the night before and you can't remember for the life of you how to operate that coffee maker. These are all examples of things that start to happen. about the mid-stage of the disease that really start to impact a person's ability to function in their world. And that's when it really needs to be addressed because it can pose some pretty dangerous situations for people and safety issues and just, you know, not being able to Compile a list of groceries that you need because you want to make a couple recipes that you've been making for years and you can't remember what goes into that dish. So these are all examples of mid-stage advance or to advance a cognitive decline that really would make the difference. Now people are misdiagnosed all the time. I don't know if you remember a very famous musician and actor by the name of Chris Christopherson.

KANDIDLY KRISTIN: I didn't.

LISA SKINNER: Okay. I love Chris. And this was a really interesting situation because Chris Christofferson was displaying many, many, many of the symptoms and behaviors that accompany Alzheimer's disease to the point where through a process of elimination, he was actually diagnosed with having Alzheimer's disease and was treated for it for three years straight. One of his doctors decided to just check one more thing out and tested him for Lyme disease, which is a tick-borne disease that makes a lot of this symptomologies of Alzheimer's disease. And lo and behold, he tests positive for Lyme disease. He did not have Alzheimer's disease. He had Lyme disease and it advanced to his brainstem and was mimicking a lot of the same symptomology that you see with Alzheimer's disease. So this is the point to what I'm, I'm emphasizing here. And it's so difficult to really pinpoint exactly what's going on. Which disease is it? People left with a lot of people aren't aware of this, but, but Mixed dementia is a lot more common than most people realize. And when I use the term mixed dementia, what I'm referring to is people are suffering from more than one of these brain diseases simultaneously. So maybe they have Alzheimer's disease. damaging their brain and they have another one of the brain diseases like frontotemporal lobe dementia, the one that Bruce Willis suffers from. Same time and people think, I didn't even know that that could happen.

KANDIDLY KRISTIN: Like that was a thing. Yeah. Yeah. So is there anything that folks can do right now to lessen their risk of developing Alzheimer's?

LISA SKINNER: At some point there is, and man, these are evidence-based studies that, that there are lifestyle choices that people can make. So would you like me to explain how your, the risk factor full scenario works of people? Yeah. So there are actually, I know this, this gets really complicated, but there are many, many, many. risk factors that go into determining what a person's risk is of developing Alzheimer's disease. We have risk factors that we call modifiable. And when I say modifiable, that means we can manage them or change them for being a risk factor. And then we have the risk factors that we call non-modifiable risk factors. And those are the ones that are set in stone. We can't change them. The number one risk factor for anybody developing Alzheimer's disease, again, is our age. And we cannot do a thing about that. Right. The second is our gender. More women develop Alzheimer's disease than men and the reason behind that, we still don't know. There are theories that are being considered like hormonal changes in a woman's body that men don't experience. Later in life, the fact that we typically live longer than men. But gender definitely is a non-modifiable risk factor. Then we have the APOE4 gene. You are carrying one or two of those that is a non-modifiable risk factor. So that's going to, you know, increase your risk. So, so, so let me just kind of. reiterate where I'm going with this. There's all these categories of non-modifiable risk factors. The more that apply to any one individual, the higher that individual's risk is of developing Alzheimer's disease. Then when you add on the modifiable ones, that again just increases somebody's risk, excuse me, of developing Alzheimer's disease. Now the non-modifiable risk factors, I mean the modifiable risk factors, oh, ethnicity is a non-modifiable risk factor. Latinos are at a much higher risk of developing Alzheimer's disease than some of the other ethnic backgrounds. Really? That's interesting. So we can't change our ethnicity. So that stuck with whatever ethnic background you come from. So you see where I'm going with this, all the things that we can't change. Right. Will increase a person's risk of developing the more that apply to you, the higher your risk is. Then you start adding on the other risk factors. Right. which include the number one modifiable risk factor for developing Alzheimer's disease, believe it or not, is cardiovascular disease. So if you have hypertension, high blood pressure, anything that has to do with cardiovascular disease, your risk of developing Alzheimer's disease has just increased. But this is the difference. That can be treated and managed and changed. But being treated, if you're on medication, then that won't necessarily increase your odds of developing Alzheimer's disease. Diaphoresis is a huge risk factor for developing Alzheimer's disease in the very reason why Latinos and a few other ethnic backgrounds are at a higher risk because they tend to have more propensity for developing diabetes and heart disease. So you've got diabetes, you've got sleep apnea, you've got, but if you're using a CPAP machine, now you negated that, you're challenging it, it's being treated. So here's where we get into lifestyle choices. There have been studies out there that show a direct correlation between the choices that a person makes in a lot of different areas and managing these medical conditions is one lifestyle choice. If it's affordable, I mean, if you have been diagnosed with diabetes, but you don't have access to medical care to manage it. Yeah, that's, that's a huge issue for who don't have access to medical treatment, medical care, but the, the things that we can do that. can make a huge difference. And we know this are making sensible choices in terms of what we eat. So the preferred recommended diet for people who want to lower their risk of developing Alzheimer's disease is in Mediterranean based diet, which this, uh, A lot of leafy green vegetables, broccoli, you know, healthy, healthy green vegetables, um, lean meat. So eating more fish and poultry versus red meat, not eating simple carbohydrates like white bread and white potatoes and white rice. And, you know, we call it the white stuff. And the worst foods that we can ingest. that increase our risk of developing Alzheimer's disease are what we call ultra-processed foods.

KANDIDLY KRISTIN: Hot dogs.

LISA SKINNER: I love hot dogs. So there are definitely options for people. If you're listening to this right now and you're fully 30 years old, And you might be thinking, okay, so this is a disease that pretty much impacts people in their sixties. I've got 30 something years before it's going to happen. But I'm telling you, if you make. Sensible lifestyle choices. Now you are already reducing your risk of developing Alzheimer's disease in 30, 40 years. We know this. There are many, many, many, many studies that have kind of substantiated that. Yeah. And that exercise is very important and it doesn't have to be no pain, no gain mentalist. Like we've been told all our lives.

KANDIDLY KRISTIN: Yeah.

LISA SKINNER: Walking.

KANDIDLY KRISTIN: Okay.

LISA SKINNER: Simple walking or, you know, swimming or anything that you're continuously moving and getting your heart rate up, but it doesn't have to, you know, be painful. Right. And then the third thing that we know that can reduce a person's risk of developing Alzheimer's disease is keep that brain active by challenging it. We're not talking about. video games and we're not talking about reality shows. We're talking about really challenging your brain. I'll give you two examples. The number one thing that we can do To really challenge our brain and have a, haven't been a huge impact on our risk of developing Alzheimer's disease is to learn a foreign language. Why is because the parts of the brain that are used to have to make the translation between one. language in another is really making your brain work hard. Or the other thing that has a noticeable impact is to learn a musical instrument. Same thing, you're using parts of your brain that really challenge it. I do a lot of crossword puzzles.

KANDIDLY KRISTIN: I was just thinking that. I love crosswords.

LISA SKINNER: Yeah, I do too. And I do a lot of research because, uh, you know, I keep, I have to keep on top of all the newest and I do a lot of research and I'm hoping that all of these lifestyle choices that I make will make a difference because there's a lot of risk factors that are already not.

KANDIDLY KRISTIN: Yeah. Right. Oh my God. Yes. So Lisa. You mentioned, you've given me great segues, I just want to say. So what are some promising developments or Alzheimer's research treatments that you personally believe gives us hope for a cure, possibly better treatments for Alzheimer's? What are you seeing out there?

LISA SKINNER: All I can say is I'm According to the Alzheimer's Association, and this has been probably the last year, I took a course through them in about the last year, and it was disclosed through that course that there are currently over 300 clinical trials going on, testing a variety of treatments and drugs for cures and treatments, but as of this conversation, We don't know of anything, there's nothing on the horizon that is even looking hopeful or promising enough other than this new drug that was recently approved by the FDA called Lekembe. And the hope in that drug is if it's administered early enough in the stage of the development of Alzheimer's disease than it has shown to help with the progression of it. But unfortunately, and this really kind of goes back to everything that I've been saying here today, how difficult it is to really differentiate Alzheimer's disease from mild cognitive impairment and normal aging forgetfulness because most people don't really start to show significant signs of brain disease until they're already in the mid-stage. And this is another reason why it's been so difficult, because the drugs, the treatments that have given us some hope need to be administered Early. In the stages of the disease. So that's been a huge challenge for the medical community. There's some stem cell research that has been going on for over 30 years that looks somewhat promising in terms of regenerating the brain cells that have been damaged by these brain diseases, but It's not advanced far enough to where they, uh, can start really, um, utilizing it on humans. And then, and then the other thing that that's a little disconcerting, there are several studies out there. One is called the nun study. And the other one was a study that was done for a group of seniors at a retirement home in Florida and they were all like in their nineties. And so for the nun study, they studied these nuns over the 10, 20 year period. And the reason why they chose the nuns to do this study is because they all had a very, very comparable lifestyle. live together, they, you know, lifestyle, their lifestyles were almost identical. So that was an easier study to compile useful information because you don't have to factor out, you know, does this, but that doesn't. And the thing that was really interesting about the nun study and every single one of these nuns that participated in the study agreed that Once they passed, they would allow an autopsy of their brain.

KANDIDLY KRISTIN: Okay.

LISA SKINNER: So the hallmark of Alzheimer's disease seen in the brain is what we call plaques and tangles. And we leave it's these plaques and tangles that for in the brain and basically suffocate. and shrink your brain and do the damage. Now, the thing that was so interesting about this study is a lot of the nuns, after they passed away and their brains were studied and autopsied, had the plaques and the tangles in their brain. Just, you know, it was so obvious they existed. They were there. They couldn't believe that, that they, that it was as involved as it was. But a lot of these nuns were asymptomatic to the symptoms of Alzheimer's disease. So what was it about their lifestyle? Yeah. And then conversely, there were nuns that were studied. Their brains were autopsy and they didn't show either severe situation of plaques and tangles in their brains, or they didn't have any, but they were showing symptoms of Alzheimer's disease. And what's that about? Well, that's what we don't know. Oh. Yeah. How can, how can these nuns have been living their lives with showing no symptoms of having Alzheimer's disease, which is progressive and degenerative. Now there's no stopping it. Right. But when their brains were autopsied, their brains were filled with flaxen tangles. And then you have the ones that didn't have any. That showed cognitive declined symptoms and the same results were found with the retirement home. These 90 something year old people that also agreed to undergo a brain autopsy upon their passing. And the same was found with those people that some of them did have the plaques of tangles, but were asymptomatic. And some of them. were clearly showing signs of dementia, but they're not finding the basis or the explanation for it in their brain. That complicates things, even everything.

KANDIDLY KRISTIN: That is amazing to me. I wasn't expecting you to say that at all.

LISA SKINNER: The results of those studies just absolutely are mind boggling.

KANDIDLY KRISTIN: Yeah, and that makes it even harder.

LISA SKINNER: Yeah, and how do you figure out this disease and, you know, the causes? There's so many contributing factors these days, they're environmental, they're just the, the foods we eat, the lack of exercise that we get, the, the lack of brain power that we, um, but we do know, and this is hope for all of us, that doing a lot of these things we do know can make a difference. Does it mean you're not going to develop Alzheimer's disease? but it will reduce your risk if you do make these sensible lifestyle choices. That we do know. So it's kind of up to us to choose if we want to increase our risk by not doing these things and making these sensible choices or making a lot of these choices and hopefully it's going to pass us by and we'll get through the rest of our lives without having to live with a brain disease.

KANDIDLY KRISTIN: Amen to that. So Lisa, I want to talk a little bit about your books, Not All Who Wander Need Be Lost. I love that title, by the way. And Truth, Lies, and Alzheimer's at Secret Faces. Both of your books have received a lot of acclaim for their unique perspectives. And if you could just share the inspiration behind them and the main takeaway that you hope readers got from the books.

LISA SKINNER: Oh, I'd be very happy to. The first book, which went bestseller twice and actually won. really honorable award. That was my first book. And what I was intending to do was give people a cursory understanding about the disease, what happens to the people, what's going on in their brain, what to look for, the behaviors. You know, it's a compilation of a variety of true stories that I have personally experienced. Some of them were um, pertaining to my family members, like the birds in the mattress story was my grandmother's story. And all of the stories in there illustrate people living with this disease on a day-to-day basis. There's a glossary in the back of terms and stages of the, the progression of the disease. So it's, it's really meant to be a resource for people to have a better understanding of the disease and what to expect and what to look for and how to respond to a lot of these behaviors. The reason why I titled it, not all who wander need be lost is exactly what it says. I mean, one of the myths and stigmas that we hear about this disease, which we already talked about was. you're lost after a certain point in this disease. And what I'm saying is if you live with this disease, you don't necessarily have to be lost for the rest of your life. So it kind of elaborates on that point of view. The second book is really an expanded version of the first book with more, um, updates, current information and elaborates more on living with this disease because there was about a five year period in between the two books. So I just updated it and then. At the end of January, I'm actually releasing a very comprehensive training program that is tailored to caregivers and family members that is so detailed and so comprehensive and so robust, but all talks in terms that people can understand and relate to, and that is meant to be the best resource. There's a workbook that you know, true, false, all the information that was spelled out in the six module training course that people can, you know, refer back to in their journey with this disease. So that's going to be released at the end of class.

KANDIDLY KRISTIN: Awesome. So just briefly, I know that's come in and I am definitely going to include that information in the show notes when this goes out for anybody that wants to, you know, take the module and get some understanding, but what advice do you offer to caregivers, family members who are facing the myriad complexities of caring for someone with

LISA SKINNER: That was really well put. I love that. And really what it comes down to is understanding this disease. And that's the one common thread that I realized about people. And it's based out of the myths and the misunderstandings and the misperceptions and the misconceptions about these is a lack of understanding. what it's doing to the brain of the people. And, you know, again, I want to just clarify the hallmark of Alzheimer's disease is different than the hallmark of Lewy body disease. But a lot of the symptoms that show up in the behaviors and the things that they say that don't make any sense overlap. So that's number one is to. understand the disease, what it's doing to the person you're caring for, what it's doing to their brain, the things to look for and recognize. So if you are caring for somebody that lives with Alzheimer's disease, you know that at some point they are going to lose their ability to make sound judgments about things. So what does that mean for you as a caregiver or you as a family member? That means that everything that they learned growing up, like don't cross the street before you look both ways to make sure a car's not coming. They can't. They can't wrap their heads around that concept anymore. So they might just walk right off the sidewalk, not look at all. And you're not expecting that because you're not aware that that happens to a person who lives with Alzheimer's disease. These are the things that are so important to understand, to recognize that A story that you're listening to of birds living in your grandmother's mattress coming out at night and pecking at her face. She believes. Yes. A thousand percent that it's happening to her, that it's true. And how the most effective way to respond to that false belief is so you don't create what we call a catastrophic reaction and send her into, you know, escalate the situation. All things that people aren't aware are part of managing this disease and creating meaningful, purposeful lives for them and avoiding catastrophic situations. Yeah. All of my writings explain all of this to people so they can, you know, really what it gets down to is focus on what really matters and that's spending quality time with your loved one or the person that you're caring for while you're with them and not having to be side blind unexpectedly by all these things that come up.

KANDIDLY KRISTIN: I could talk forever about this.

LISA SKINNER: Talk about?

KANDIDLY KRISTIN: Yeah, there's a lot. I don't have any direct experience with it, but I have some indirect experience with the people that I manage and building that I manage. So if somebody is out there listening and The answer to me is obvious to this question, and they're interested in learning more about dementia care, your specific approach, and resources, organizations that are available to them. What do you recommend they explore?

LISA SKINNER: Your books and stuff first and foremost, but outside of- Books are available on Amazon. I'm probably at this point, besides my training program that hasn't been released yet, probably most proud of my audio book. The narrator that I found to narrate the content of Truth, Lies, and Alzheimer's at Secret Bases is phenomenal. She was so good that it's easy to listen. So I recommend the audiobook if you want to be listening to it while you're driving to work or jogging or walking or whatever. The training program that is coming out, I think will probably be the best resource yet. And you can probably, you could find more details about that on my Facebook. page called Lisa Skinner author. So if you went to Facebook and went into the search bar and put in Lisa Skinner author, a lot of these things that we've talked about today are resources available to people. to, to tap into on that Facebook page and just, you know, keep checking because I will be making more announcements about the release of the training program forthcoming because I am planning on releasing it the end of January. It'll be ready. It's, it's, it's pretty much done now, but I just putting like the icing on the cake.

KANDIDLY KRISTIN: Okay. And that we can find that through the Facebook page.

LISA SKINNER: Lisa's author. Or you can also get to that same page by going to truthliesandalzheimers.com.

KANDIDLY KRISTIN: That's the website. Awesome. Awesome. Awesome. I'm looking forward to that. Now, will the training modules be video, audio, a combination?

LISA SKINNER: There, there, um, there are six modules plus an e-workbook and it, the modules are all visual and it walks you through each module has like 22 PowerPoint slides up to 30 PowerPoint slides. Just breaks everything down to a, a very relatable way to. absorb the information, understand the information, and I haven't quite yet decided. I might narrate each month, but I haven't decided that yet. Okay. But for visual, and then you'll have the workbook that comes with the training program that can serve as a resource and a blueprint, um, for the, the whole entire duration of the Alzheimer's experience that you are having with the person you're caring for or with your loved ones.

KANDIDLY KRISTIN: think that's awesome. Lisa, it took us forever to nail this recording down, but I am so thankful and grateful to you that we did. I am thankful for the work that you do. I don't think I've ever met anybody whose life's work revolved around Alzheimer's, but it is such an important, important thing that you do. So thank you.

LISA SKINNER: Thank you so very much. And if you, if you'd like to send me the link to the recording, I'd be happy to put it up on, on my Facebook page for my followers to listen.

KANDIDLY KRISTIN: I absolutely will. Definitely. You'll get your own personal copy. Once it's all edited and made to sound real nice, but my intro and outro and stuff in, but absolutely get that. And I'll tag you when it goes live.

LISA SKINNER: And I have found, I know we're out of time, but I really hope that this has been helpful information to the folks out there listening, because if there's nothing else, one thing that I know is so true is Pretty much everybody does have an Alzheimer's story. They know somebody going through it. They have it happening in their families. So the more we can raise awareness and help people better understand this disease, I think it will help their lives be easier in the long run living through this.

KANDIDLY KRISTIN: Great. Absolutely agree. I am always happy to entertain with my show, but the prime purpose is to educate, inform, empower, and get information out there about whatever I'm talking about so that people who have gotten a diagnosis or know someone who's gotten a diagnosis, and it's a lot. It's a lot to ingest that this helps in some way. If one person listens to this and they're like, Oh my God, I thought I was crazy, you know, or I thought I was alone or I didn't know that these things, then I've done my job and I'm happy. And I am again, so very grateful for your time today. I'm sitting down and talking to me and guys, Lisa's contact info, her website link links to her book and ultimately to the The modules and the e-book that'll be coming out in late January will be in the show notes and forever embedded in this episode. So you can find the episode at any time and thick link. So, and if you're listening and you suspect you might have, or a family member might be suffering from Alzheimer's, you need to get her book. That is my personal suggestion to you is get her books.

LISA SKINNER: Well, thank you. I appreciate them.

KANDIDLY KRISTIN: Oh, you're so very welcome. And listen, I don't want you guys to forget to visit my little old website at www.thekandidshopkandidwithk.com. Listen to this episode or three or four more. Drop me a review and please share the show with your friends. And until the next time we meet, I want everyone under the sound of my voice. Keep it safe, keep it healthy, and keep it kandid.