The Lasting Effects of Alzheimer's

So welcome Tara. I'm so glad to have you here.

And then I went on with college and the rest of my life and said, I'm not going back to work in senior care. Everybody thought that's what I would do. And I said, no, but I have a passion for cognitive science. I still have a passion for cognitive science and I'm a writer and I've combined those things, which is part of what led me to nonprofit and also Alzheimer's and eventually to bind.

And one of the things I got to do at Alzheimer's association, one of my roles was community awareness and education. That was with, um, every single range of person out there from corporate executives to caregivers. But also to children. And I had the opportunity to work with a fifth grade school in Plano. Because they wanted to understand it because her teacher was being impacted. It was her mom who was diagnosed and there were a lot of questions from the kids.

So we went in and what we did is we took, we talked about Jenga as a puzzle. And we talked about how the brain and neurons affect different cognitive and memory skills. So, what we did is we each took a block and we wrote a piece of information on it. This is my address. This is my dog's name. This is my favorite car. This is how I get out of homework. They wrote that.

And so what we did is we put the puzzle together and the things that were the very basic things like this is how I walk across the floor. And this is how I eat food. Those were at the bottom. And in that step at the very top, the least kind of impactful was how I get out of homework. And so what we did is we took a block out.

And when we took a block out, we talked about that being neurons that were being impacted by Alzheimer's disease, which is a, um, we don't have time to go into it the way that disease actually affects the brain. But it's, um, it's the death of the neurons or the death of the network. So when we took a block out, That piece of information was gone. And I said, what do you think is happening to the person when that block is gone?

And the student said, well, can you put in a new block and write a new piece of information on it and the answer's no, once it's gone, it's gone. Can you pull it halfway out? And it's kind of there and it's kind of not, absolutely because that's kind of what keeps Jenga balanced. And so what we did is we pulled out pieces of different information. Some of it was, this is my address.

Well, if you don't have the piece of information, if this is my address, and this is where I live, then it makes sense that if you're walking or you're driving, you don't know how to get home because the piece of information about how. Where home is doesn't exist anymore. It's actually gone. And sometimes adults will, um, get frustrated with patients that have Alzheimer's disease, because they will say, you know, this, you should know this, you knew this last week.

I'm going to write it on a sign and put it on the mirror for you to remember. What's happening is it's kind of like. It's kind of like a house. So if you imagine a house, two story, three story house, and every room has a light in it. You walk in, you flip the light switch on.

If you ever walked in a room and the light bulb is flickering and you think, oh, it's about to go out and then it comes back on and it stays on for a week and you think, okay, I don't have to get the ladder and change the bulb. I it's fine. Then it flickers again. And then eventually it's gone. So what happens with neurons in the brain as they're being affected by Alzheimer's disease? Is that those light bulbs. Those networks, those neurons that are driving cognition.

And memory and eventually physical function are flickering because they're dying because they're being destroyed by the disease. And eventually the light goes out. So one of the things that people don't understand is that, um, Alzheimer's is always fatal. It may not be the actual only cause of death. But there is no cure for it. And eventually it will be fatal.

Because one by one, each room, the lights are going to go out and at the very end, the lights that go out are the lights, the neurons in our brain that tell our, tells our heart to beat. It tells us how to swallow. It tells our lungs how to breathe. Yeah. So if you think about it that way, it's a little bit easier than trying to understand why somebody remembers something today. But they didn't remember it last week and then they remember it next Tuesday and then they never remember it again.

That that ability has also gone, that you can't take the neuro-plasticity the same way that you focused on a brain injury to provide it to an Alzheimer's patient, that you can regain that cognitive functioning of what my address is. It's gone, it's gone, it's gone. It's gone. Wow. I did not know that.

So anything we can do to strengthen the body is going to strengthen the defense of the brain against the disease as much as possible. And researchers across the world have combined. Um, actually this is one of the first diseases we've ever done this with in real live time, with real time data so that somebody in England is studying the disease and a way to stop it a way to reverse it. And somebody in Puerto Rico is doing it. Somebody in the Iceland's doing it. And instead of waiting for.

Uh, study to be published in a journal and a year later people are reading it. They're actually exchanging data online in real time. So that it's happening, the information is happening faster and faster. And that's one of the things that Alzheimer's association. Has funded, but we do know that what affects the body affects the brain. So things that can help with living your best life with Alzheimer's disease. And when I started working in Alzheimer's, it was 2012.

Okay. And we talked about Alzheimer's being a fatal disease. Since then what we talk about is we live with Alzheimer's disease and we live the best life that we can for as long as we can. So things that affect the brain blood pressure, those who are, uh, have diabetes, managing diabetes, the things that have the most impact are exercise that you don't have to go work out on the treadmill every day. But getting the body moving right. Diet, and it's not a specific diet.

There's so many things out there that say this diet or this pill or this, you know, powder this spice or whatever, you can look out and national institutes of health and the. Um, institutes for aging and see what the most recent research is and alz.org research will do the same thing, but it's basically a healthy diet, keeping your blood pressure down and keeping diabetes in check, keeping your cholesterol in check another thing that helps.

And we also found this with, with our work together in, uh, and addressing brain injury is socialization because what happens when we're able to be with others and interact with others, especially people we've only just met. Is the brain is very active. We're learning about this person and we're learning things we didn't know before. We're, we're communicating back and forth. One of the things that is similar with Alzheimer's disease and unfortunately brain injury is we become isolated.

Our family doesn't know how to work with us, our friends step away because of fear. Yeah. Or misunderstanding. Misunderstanding. Right. Yeah, so sleep is also extremely important. And one of the things that happens when we sleep is that all our body resets itself. Again, I'm not a clinician, but there are levels in the brain of acetylcholine that helps to restore the brains function and without sleep it's like depletes it.

And they're actually sleep medications that stop the renewal of acetylcholine too. So things, two things to look at. But that those things that help us keep our body healthy and our brain healthy with brain injury can also strengthen, um, Alzheimer's disease. And then the other thing that we, we talked about, and I know you guys mentioned was how does Alzheimer's disease affect those who have brain injury? Yeah, it is.

Uh, we have an episode every Thursday, so you can just check us out, make sure to like us on all your social platforms, especially on YouTube. You can subscribe to us, listen to us, watch us and make sure to write to comment as well. So, like I said, your information is just so it's really good. Like a lot of things that I didn't know about, I really liked how you shared the information as if we were, well, you did to kids, right? Fifth graders, but.

It makes it so much easier to understand and know when it's. Like understandable. So I'd never had heard it that way and it's been so good. And same with like the information that you're doing right now for tips and how it connects to brain injury. I did have a question though, like, I did hear from you when you were saying it, when you were describing like who you are and how you got so involved, but let's take a couple steps back. How did you get so involved in.

You were interested in it because of your age, but. Like w did you go into school for brain injury or like, um, like neurons and like do this, like for school, how did you get so involved and so knowledgeable? I mean, yes, you do read this a lot, but like, how did you get so involved in and then become part of within the community for Alzheimer's.

So that's always been a passion of mine and I didn't have a degree in psychology and I also have a degree in English as a writer. And so I thought this is what I want to do with my life is find something I care about to write about. And that is. Um, that has been, was Alzheimer's Associations work in the community and also eventually BIND, but yeah.

So, um, the belief, my belief as a, as a fundraiser and as a community engagement leader is every single person we encounter has the possibility of a connection to the disease or to brain injury or to. To puppies, whatever it is that we're, we're looking at and raising money for. And, and my job as the development director and with the team is to, uh, to identify how that person wants to be involved in the work. If it's something, if they want to give $5, because $5 is what they have to give.

Then we honor that because they're contributing to something that they care about, how much it is. Doesn't matter. If what they can do is volunteer to help unstack boxes when we're doing auction or they want to come and help out at the clubhouse, you know, for when we're at BIND or they want to come and be a part of walk to end Alzheimer's for the Alzheimer's association. It's honoring their connection and finding a way to talk to celebrate that and give them the opportunity to do that.

For some people it's fundraising, for many it's volunteerism. But what we find with fundraising is that when we have people that volunteer, 80% of volunteers are also, uh, donors. So walk to end Alzheimer's and during. Um, during June the longest day, June 21st is the second largest fundraiser that Alzheimer's association has. It's another way to, to.

Take a positive look towards and be together with friends and colleagues and family to say, we're going to fight this and we're going to do it together.

Like, is it the warnings of Alzheimer's? Is that like the best thing to be like raising awareness about?

If you pick up a key and you look at it and you don't know what it is or what it does, that's a problem. Okay. We also talk a lot about, um, loss of problem-solving and loss of being able to complete tasks that one normally would complete. An example of that is somebody that was really good at balancing their checkbook. And always did it every month. All of a sudden is in the middle of it and stops and does not have an idea how to continue because those neurons are being affected.

That's a problem. We're seeing something happening in the brain. It's interrupting something that's normal. Um, so, so it's, it's really a change in function that is affecting daily life is the most important thing.

It has a pretty significant, I think it's like 25%. We see other forms of dementia that are being caused by other diseases Huntington's disease, we can see dementia. Parkinson's disease, we can see dementia. TBI, any other acquired brain injury, sometimes we'll see dementia. It's a result of what's going on with the brain in the body. It's not its own disease. Far and away. Uh, Alzheimer's is the most prevalent. And right now it affects about 6 million people in the United States.

A little bit of a difference and I don't have the current stats in front of me, but we know that it affects, uh, the Hispanic community a little bit differently and it affects the African-American community a little bit differently. And part of that, as you remember, we talked about body affects the brain, those diseases that disproportionately affect African-Americans. Or the Latino community have an impact also on Alzheimer's.

So if your risk factors are higher then the possibility of you getting it is, is higher. Again, it's how you manage, how you manage your own risk factors. That is the, that is the key.