Reverse Your Thinking®: Understanding Alzheimer’s & Dementia with Lisa Skinner

She lives in a lovely neighborhood. If you live there, they say you're living good. Pretty lawns with fancy landscapes. She stares ahead with a blank gaze in her lovely neighborhood where the living is good.

And welcome back to Reverse Your Thinking. It's my pleasure this afternoon to introduce you to bestselling author Lisa Skinner. She is a behavioral specialist with expertise in Alzheimer's disease and related dementia. In her 30-plus 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 Skinner is a certified dementia practitioner, a certified dementia care trainer through the Alzheimer's Association, and a certified dementia care program director, as well as the internationally recognized podcast host of Truth, Lies Alzheimer's Show. She's also internationally recognized as a TEDx speaker and has appeared on many international national and regional media broadcasts, including a feature in Forbes Celebrity Magazine and on the NASDAQ Times Square Bulletin display. And she also holds a degree in human behavior. Lisa, that's a heck of a mouthful. Thanks for making the time.

Well, thanks so much for having me. I, uh, I'm delighted to be here today.

It's our pleasure. So maybe you could give us a little bit of background on you to start. Where did you grow up? Where'd you go to school? What were your interests? And how did you get into this particular specialty? It's not the kind of thing that everybody gravitates to.

No, trust me. When I was growing up, I cannot remember one single time when I ever thought to myself, when I grow up, I want to work with people living with Alzheimer's disease.

Well, you better be careful if you can't remember those things. You know, I don't know what that might say, but— oh, okay. But seriously, but seriously, so tell us about us.

A very profound backstory to how I got here.

Okay.

It's— I grew up in Marin County in, in Northern California. And just so happened that my grandmother lived just a few miles from our family home. So I had the opportunity to have a very close relationship with her. And I visited her often. I really adored her. She was a very sweet lady, great cook. So I had just gotten my driver's license and I couldn't wait to drive over to her house and show it off. So I told my mom I was going to drive over to Grandma's, and I did. She opened the door. Nothing seemed amiss. She led me into her living room. We sat down, you know, to have what I thought was going to be a normal conversation, right? And the next thing out of her mouth was telling me that there were birds living in her mattress. They would come out at night and peck at her face. She was terrified every single day and night of her life She couldn't sleep, she couldn't eat. And then she moves on to tell me— she points at her living room carpet and asked me if I see the rats running all over her living room. Ah, I didn't say anything, but she was insistent that they were there and said, they are taking over my house. And then the last story she told me was that there were these men who continuously broke into her home. She knew they were stealing her jewelry and other private possessions. They were eating her food and just leaving like crusts of bread for her to eat. And she was 100% convinced that they were eventually going to do away with her and then just take over her life.

How old were you when this happened?

I was 16.

16.

Wow. This was 50 years ago.

That's a lot.

And I had told my mother that I was going over to Grandma's and she didn't say a thing. She's okay. Have a nice visit.

Mm-hmm.

I was absolutely dumbfounded. And that experience has stayed with me up to now. It never left my mind. I didn't know how to respond. I didn't know what to say. My jaw was probably, you know, hanging on the floor by that time. And I said to her, you know, Grandma, I would really like to help you, um, with these situations. I understand how scared you are, and maybe, maybe there's something we can do. I said, let's go into your bedroom. And you show me where these birds are getting in and out of your mattress, so maybe I will know who I should call to fix the situation. So we went in there, I threw the covers off her bed, I'm looking everywhere for holes, I pushed the mattress up, look underneath, and I said, Grandma, um, can you show me exactly how they're getting in and out of your mattress? Because I'm not seeing where it's happening, right? And she looks me straight in the eye and she said, "Oh, Lisa, they are there. They're just very, very clever." And I learned later on when I decided to pursue this as a professional career that people living with Alzheimer's disease and related dementia who have false beliefs or delusions, as she was, um, displaying here, become masterful at explaining away their story and their belief. Oh, you couldn't show me where these birds were getting in and out of her mattress, so she came up with this brilliant response: They're there, they're just very, very clever. So I finished my visit with her. I went home and I said to my mom, were you aware that something's wrong with Grandma? And I told her the whole story. And she said, oh yeah, Grandma's been diagnosed with senile dementia. That's what they called Alzheimer's disease 50 years ago. And I'm like, well, thanks for the warning. And I'm telling you, Matthew, it's the only reason why I didn't argue with her, try to correct her, or contradict her by saying something like, "These are the most far-fetched stories I've ever heard in my life. You've got to be kidding me," is because I grew up in that generation that taught us that you do not contradict your elders. You do not argue with your elders. You respect your elders under every circumstance under the sun. And it turns out when I did decide to do this professionally— oh, and by the way, I've had 7 more family members since my grandmother who have lived with one of the brain diseases that causes dementia. So I think this might be my calling.

I guess so.

Yeah. And so when I challenged my mother on it, and said, why didn't you warn me? And she said, Lisa, this is not something that we will be talking about. End of subject. And that really was the mindset back then because people associated— not that many people really understood what it was. And the belief was it was more of a mental illness than an actual brain disease that was damaging our brains and causing these very peculiar behaviors that I witnessed. I witnessed a false belief or a delusion. I witnessed a hallucination with the rats and paranoia and, um, suspiciousness with the men.

Uh-huh.

And that was the mindset back then, because people, if they found out that you had somebody that displayed these type of behaviors in your family, there was a huge stigma attached and people associated it with being crazy. And it's, it's not being crazy. This is an actual disease. There are over 100 known brain diseases that cause—

really?

Yes, that cause very similar symptoms. And we refer to those symptoms as dementia. Dementia is not a separate illness. Hmm. It— when we use the term dementia, we are referring to what I saw that day at my grandmother's house. 3 of them. And there's hundreds of them. You mentioned a lot of them in your second segment.

Uh-huh.

And it really comes down to what is causing the irreparable damage being done to the person's brain. And where it gets even more complicated, and this is more common than a lot of people probably would, would think. Yeah, it is really not uncommon for people to suffer from more than one brain disease simultaneously. So, for example, you can have Alzheimer's disease and vascular dementia attacking a different part of your brain. At the exact same time.

Wow.

So it's a very, very difficult situation for doctors to really kind of wrap their heads around. And sure, most of these diseases cannot be accurately or definitively or conclusively diagnosed. Any test, the testing process, you mentioned this in your segment one, it's very complex. It's very detailed.

It—

there's a lot of moving parts and a lot of components that are factored in. But even with all of the diagnostic tools that we have available today, uh-huh, accurate diagnosis, 100% diagnosis is still not possible until autopsy. They've gotten it to where Uh, in some cases they can arrive at about a— up to a 90% diagnosis, but there's still that 10% that it could be something other than what they're, um, believing it might be. So, right, yeah, that's where things stand today.

That last thing about a full diagnosis, that after death, that That rings about things I remember reading some years ago about football players that were experiencing—

Traumatic brain injury.

Right, traumatic brain injury, that you couldn't accurately diagnose them until after death either. But a lot of that diagnosis seems similar to dementia, no? Or am I wrong here?

Yes.

Yes?

Yes. It falls into that dementia bucket.

Uh-huh.

So that's one of the over 100 causes of these very similar signs, symptoms, and behaviors that we see. And trying to pinpoint it down to, you know, one thing or a couple of things. Let me, let me give you another example of what I'm saying to support what I'm saying. Do you remember Kris Kristofferson?

I do.

Yes, I loved that guy. He, he was my idol as a teenager. And I read that he was diagnosed with Alzheimer's disease and he was being treated for it for over 3 years.

Wow.

And then one of his doctors decided to test him for Lyme disease. Just to rule it out, because this whole process is kind of a process of elimination to determine what's not causing it. And then, you know, getting down to, okay, well, we've eliminated all these things. I think we're looking at Alzheimer's disease, right? They got to that determination and he was being treated for Alzheimer's disease for 3 years. He was put on medications and, you know, early intervention strategies and things like that. Well, the Lyme disease test was positive.

Uh-huh.

He had Lyme disease. Again, Lyme disease is another disease that mirrors and mimics symptoms of Alzheimer's disease and related dementia.

And what was the outcome of that with him? Do you know?

Well, he recently— he passed away in the last couple of years.

I know, but when he was treated for Lyme disease, did he—

I think they were able to get it under some control, but it was— you're supposed to really start treating it with antibiotics when you're first bitten in that very, um, noticeable mark, like, right, bullseye shows up, and then it's treatable with antibiotics. But he wasn't diagnosed for years, and it does get into the brainstem, and you start to display very similar symptoms to dementia symptoms.

Gotcha.

So he was treated, but I don't know if it was reversed for him because the right started years ago.

I didn't know about Lyme disease. I have heard, particularly for seniors, for older adults in assisted living or in nursing homes, that there's a connection between having a UTI and exhibiting some of these symptoms. Is that still true?

Yes. The difference is if somebody has a urinary tract infection, Right. And it goes untreated and gets into the blood. Then we start to see really severe symptoms that resemble dementia, but they come on very quickly. And dementia doesn't come on quickly like the symptomology that we see with a urinary tract infection.

Right.

And we call that intermediary stage where they're displaying these symptoms mild cognitive impairment. And if the underlying cause of the symptomology that we're seeing in somebody is actually due to one of these brain diseases, then it will progress to full-blown dementia and will be considered terminal at some point.

I see.

Now, the exception is if the underlying cause happens to be another medical condition that mimics dementia symptoms.

Uh-huh.

It can be treated and a lot of times reversed. So in addition to urinary tract infection.

Yeah.

And this applies to men too. If somebody has a thyroid condition and it's gone untreated, they can and do display similar symptomology that we see in dementia. It's treatable and it will not progress to full-blown dementia.

Would this be the case of someone that was younger, someone in their 30s, let's say, if they have a thyroid problem that they would start exhibiting dementia symptoms?

Yes.

Okay, so it's not an age-related thing.

It's not at all, not at all. It's a medical condition situation.

I have a client who, I think she's late 80s, early 90s, as I recall. She, she was exhibiting a tremendous amount dementia symptoms, and her doctor prescribed putting in a pacemaker, a heart pacemaker, and, and they all went away.

Right?

Have you ever heard of that before?

Yes.

So that's one of the risk factors. The number one modifiable risk factor increasing a person's chance of developing Alzheimer's disease is cardiovascular disease. But we call it modifiable because it can be treated.

Gotcha.

So if her symptoms were a result of her heart condition, and once she got the pacemaker and kind of reversed the heart condition, she was stable.

It did.

Be stable. Then yeah, you can see a reversal in the symptomology.

Okay. All right. Well, that, that's really interesting that that sort of even complicates it a little bit more in terms of trying to figure out what, what, what your parents or your loved ones are actually going through. And, and the, and the best way to treat that, huh?

It makes it almost impossible to really derive an 100% accurate diagnosis, diagnosis, what's causing the symptoms that we're seeing. Yeah.

Yeah, let's, let's, let's drill a little bit more into this. Uh, let's take a short break. All right. Uh, and we'll come back. You're listening to Reverse Your Thinking, and we'll be right back after this. And we're back on Reverse Your Thinking. Talking to author Lisa Skinner about Alzheimer's and dementia. Lisa, many people believe that memory loss is just a normal part of aging, like what I was talking about earlier, that it's hard to differentiate between something that's just a normal part of staying alive until you're in your 90s versus a mental illness. When should memory changes actually, actually be a cause for concern?

That is a great question, and it's also one of the myths that's been circulating around for as long as I've been involved in this space. Yeah, and it's probably the number one cause of frustration for me, other than the one that tells us that once a dementia diagnosis happens, That means, okay, end of your life. That's it. It's over. And that is absolutely not true. But to circle back to the myth that, and a lot of doctors still believe today that Alzheimer's disease is a part of normal aging.

Really?

The older we get, the worse our memory gets. And that's simply not true. So let me kind of walk everybody through how to differentiate in the very beginning stages of Alzheimer's disease. Alzheimer's disease can actually be developing in our brains for up to 20 years with no symptoms whatsoever.

Uh-huh.

It's there. And it's typical that the symptoms The obvious symptoms show up when we reach around the mid-stage. And one of the reasons why it's so difficult to differentiate is because we do go through, starting around the age of 40, a normal aging forgetfulness process. And that is what that looks like is once in a while you forget, you're in a conversation with somebody and all of a sudden the person that you're referring to, their name just flies right out of your head? I mean, that happens to me. It probably happens to a lot of you out there.

Happens to me. Yep.

Oh yeah. Have you ever walked into a room and stood there and looked around and go, I cannot for the life of me remember why I came into this room, and you turn around and walk out? Oh yeah, now I remember. These are examples of the normal aging process. Us. Okay, a lot of us are putting our phones down these days and then having to call it to find it because we can't remember where we put it, right? These things are so common, and it is part of the normal aging process. So because of what we've already talked about in your two segments and in our conversation, that the diagnostic process and the tools that are available to our medical community today is so complex to try to derive as accurate a diagnosis of Alzheimer's or one of these other over 100 brain diseases like temporal, frontotemporal dementia, or Lewy body disease, or vascular dementia, which are some of the more common brain diseases that cause similar symptoms. Most people are not given some type of diagnosis.

Uh-huh.

Until they're really— the symptoms and the signs become blatantly obvious. And that occurs around the mid-stage. It's different for everybody. Everybody, you you know, we have a saying in my space, if you've met one person with Alzheimer's or dementia, you've met one person with Alzheimer's or dementia because there are so many different causes. There are so many different symptoms and behaviors we see. I also mentioned that people can live with, with what we call mixed dementia. So they have at least two brain diseases happening simultaneously.

Wow.

So all these things make a diagnosis so, so difficult.

Mm-hmm.

Now, and then we've got that intermediary stage that I just mentioned called mild cognitive impairment, also known as MCI. And it could be that now they're displaying more frequent and severe symptoms than they did when they just walked into that room and remember why they went in there, which were saying, okay, not, not to worry, normal aging. Right now, the symptoms are becoming more and more obvious. And you mentioned a lot of them in your second segment.

You covered a lot, a lot of them for voters to look for in the president.

Yes.

Right.

Yes. So what tends to happen if it truly is a brain disease— I mentioned this before— that are causing the symptomology that we're witnessing, it will progress to full-blown dementia, and it is untreatable and irreversible. However, the exception to that is if it's being caused by some medical condition, like a urinary tract infection or thyroid condition. There's several others that can cause similar symptoms that mimic dementia, right? That's the only instance where it can be treated, and in a lot of cases, the symptoms will go away or get better. Uh-huh. So You mentioned a lot of them. Some of the more common ones, and you mentioned it, is if you notice that your loved one is repeating the same question, the same story in the same conversation over and over and over again, that is a red flag. That doesn't typically happen with the normal aging process. Process. If the person, it's really their behaviors, their symptoms, their skills, their abilities are truly inter— impacting their ability to function on a daily basis, that's a red flag. But I do want to say, and I wanna say this with a degree of emphasis, Because there are so many brain diseases that are known, and maybe some that are not known yet.

Yeah.

And they attack different parts of our brain depending what the disease is. And the symptoms do vary from person to person. I completely forgot what I was going to say.

That's all right.

Not dementia. There's an example. So maybe it'll come back to me.

That's okay. There have been a number of high-profile celebrities over the years, Robin Williams being one. There was a director, Tony, I can't think of his last name.

Well, Tony Bennett, the singer, had Alzheimer's disease.

I didn't even know that. Okay.

Yes. Oh yes, severely.

Okay. But Robin Williams and Tony and the chef, No Reservations, They all committed suicide. And it's hypothesized that one of the reasons for that is because they had dementia diagnoses. All right. And the only reason I bring it up is because there's obviously still a lot of stigma related to this. And I wanted to drill down a little bit about what people can do to offset that, that sense of hopelessness that, that causes some people to, to take their lives behind it. We're going to take a short break. You're listening to Reverse Your Thinking. We'll be right back after this. And welcome back to Reverse Your Thinking. What can people do when— I mean, I would imagine that getting a dementia diagnosis has got to be pretty depressing for a lot of people. What can you do about that? How can you help a loved one to internalize the diagnosis and take a positive approach to treating it?

Well, this is where probably the most bothersome myth comes into play, the one that has been circulating for 50 years since my grandmother, as long as I've been, you know, had an ear to the grindstone in relation to these diseases, is that once somebody believes or receives a diagnosis of Alzheimer's or one of the other brain diseases, that it automatically means it's the end of their life. A lot of doctors even say, okay, your mom has Alzheimer's disease, your dad has Alzheimer's disease, go get their affairs in order.

Yeah.

And then no resources, not what to expect, nothing. This is typical. It's very, very disheartening for family members and people who have been recently diagnosed. I am here to tell you, all the decades that I have been exposed to this disease and have counseled thousands of families, right? I have personally witnessed people live very fulfilling, very purposeful, and very meaningful lives for decades with brain disease.

Is there a, is there a support network for not only for people that have the disease, but, but for family members as well?

There are support networks out there, like support groups. Right. You just have to kind of know which one you're getting involved in. I used to lead support groups for this very reason.

Okay.

And I, you mentioned that I'm a certified dementia care trainer and practitioner. I have been trained in the most state-of-the-art, latest methodology that exists out there called a person-centered approach to care. And what that means is, to define it, it doesn't just look at the disease. It's not a one-size-fits-all care plan for anybody and everybody. What we do is we take each individual person and we customize a care plan based on their life history, on their wants, on their needs. And we come up with a plan that can provide that person with the best quality of life possible under the circumstances.

Okay. Let me ask you this. You have a podcast.

I do.

Called Truth, Lies Alzheimer's. You know, it wasn't that long ago, 20 years, maybe even less, when if you needed support for these type of things, you had to find people that were physically local. But in lieu of podcasts and the internet and how people have adapted to remote meetings, Zooms and such since COVID there's a lot of support that's available remotely and your show is part of that, is it not?

That's true. And that's why I do the podcast because I want it to become a reliable resource for people who are going through this and are just receiving all this noise in their head.

Mm-hmm. Right.

And not knowing if this myth is believable, if that myth is believable, who should they believe? There's a lot of myths and misinformation out there about these diseases. Diseases.

Yep.

So that's a good resource for people because I do, I delve into every aspect of living with Alzheimer's disease and dementia on a weekly basis.

Do you also get into issues around like early onset dementia as well?

I do. Every aspect.

Yes. Okay. So where can somebody find your podcast?

I am on all the 40 platforms, Apple Podcasts, and yeah, yeah. And my show actually is rated in the top 10% of shows globally out of the 3.7 million. I also have— I just started my own television show. So I have the podcast, which I've been doing for 2 and a half years. And then I just recently started a television version of the same podcast. It's also called Truth, Lies, and Alzheimer's, but It's a television show, and that's on E360 TV, which is a streaming network. And I talk about, you know, every episode is dedicated to something to do with Alzheimer's disease and dementia. And, you know, I invite guests on the show and talk about, you know, a lot of different aspects.

Mm-hmm. Okay.

So I do my homework. I research everything thoroughly because I want to make sure that what I am presenting is accurate and up-to-date information.

Well, you know, that, that, that, that's important to me from a number of different reasons, not the least of which is that as a broker who specializes in reverse mortgages, I'm working with quite a large number of families that have family members who are suffering from dementia in one form or another, and, and they're looking to me to help create liquidity take care of them. So that's why I was really interested in your podcast. But that's amazing that you now have a TV show as well. Yeah.

And it's a resource that anybody can access. It's free.

Uh-huh.

Well, that's— in this day and age when you have to subscribe to so many things, that's, that's, that's kind of a breath of fresh air.

Yeah.

No, I don't do that. I just want to— the problem is what we're seeing. Yeah. And why so many people are struggling when they don't need to be struggling as much. It's already difficult enough to be going through this.

Sure. Absolutely. Yep.

Is because of the misinformation and the myths that are out there. Who can you believe? What's accurate? What's true?

What's right? So you also have two books on the subject, right?

I do. One is called Truth, Lies, and Alzheimer's: Its Secret Faces.

Okay.

And part of the title refers to all these things that we've been talking about today.

Right.

I call the Secret Faces because most people associate Alzheimer's disease with, and you mentioned it in your segment, in your segment, confusion and short-term memory loss. And I think people listening to this show today have at least now realized that it is so much more complex than just short-term memory loss and confusion.

Where can people—

those are the secret faces that people don't associate being with Alzheimer's disease.

Where can people find your book?

Amazon.

Amazon? Okay. It's probably—

yeah, and it's also available in all the, you know, the book sellers.

Gotcha. You also work as a consultant, right? You help people?

I do. I do.

What's the best way for someone to get in touch with you?

Go on my website.

Sure.

MindingDementia.com. And I believe there's a way to send me a message.

Okay, terrific. Lisa, thank you so much for, for making the time to be here this afternoon. It's great to have you.

Thanks again for having me and supporting raising awareness for this very, very challenging disease.

Absolutely.

Appreciate it very much.

Absolutely. We're glad to have you. There's no doubt in my mind that somebody in our audience is gonna benefit from listening to you this afternoon. And thank you for coming back and listening to us. If you're on your way home, please be safe. And when you get there, Make sure you give your family a big hug, and we'll see you right back here next week on Reverse Your Thinking.

Where the living is good.