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The Riverbend Awareness Project brings you a new conversation each month about important causes and issues in our community. Every month of 2024 we will sit down and have a conversation with a professional from our community about significant issues like heart health, Alzheimer’s, literacy, and more. We’ll then share that conversation with you on the Riverbend Awareness Project Podcast, with the goal of sharing resources, and information that will help you have a better understanding of the particular problems, and solutions, associated with each topic.
Disclaimer: Views and opinions expressed in this podcast episode are solely those of the individuals participating and do not necessarily reflect the views or opinions of Riverbend Media Group or the Riverbend Awareness Project, its affiliates, or its employees. It is important to note that the discussion presented is for informational purposes only and should not be construed as medical advice. Listeners are encouraged to consult with qualified health care professionals for any medical concerns or decisions. The Riverbend Awareness Project is a product of Riverbend Media Group.
Emma: Welcome back to the Riverbend Awareness Project. Today's episode is sponsored by Wackerli Subaru.
Melissa: This month we are learning about Alzheimer's disease and we have Jody from the Alzheimer's Association here with us. Thank you so much for coming in today. Could you give a brief little introduction of yourself and what you do with the Alzheimer's Association?
Jody: Absolutely. So my name is Jody Cornilsen. I'm with the Greater Idaho Chapter of the Alzheimer's Association, and I am a regional outreach manager here in Eastern Idaho and Southern Idaho, kind of covering everything from Twin Falls to Idaho Falls.
Melissa: That's a big—
Jody: It's a big area.
Melissa: big geographical location.
Jody: Yes. We are a small but mighty group out of the Boise office, and the Alzheimer's Association is a national organization. So the Greater Idaho chapter covers most of Idaho.
Melissa: Well, thanks for coming in and taking your time to share with us.
Jody: Absolutely. It's not always a disease everyone wants to talk about, so anything I can do to get the awareness out there and talk about it, I'm going to.
Emma: Our first question was what do we know about how Alzheimer's develops and what causes it?
Jody: I wish I had a straightforward answer for you there. It's unfortunate—we don't know exactly what causes Alzheimer's disease, but we do know that there are some risk factors.
The largest risk factor is age. So, I mean, that makes sense. Right? And then, you know, there are other risk factors that can raise your risk such as genetics. Maybe you've had it in your family. That's a small piece of a risk factor—that does not mean you're gonna get it.
And there's a ton of research. We're on the edge of some really great research that's maybe gonna dial in a little bit more on how Alzheimer's disease happens to some and not others.
Emma: Something I've been wondering is... so we talked about risk factors. Does that mean—I don't know. Is there a way to prevent getting Alzheimer's? Is it kind of inevitable? Like, if you're going to get it, you're going to get it.
Jody: It's not. The thing that we're learning is that even though we can't change how old we are, and darned I wish we could, and I can't change that my hair is turning gray, there are some things that we can change, some lifestyle factors and that's...
There's some really great research coming out. It'll be coming out next year talking about those lifestyle changes. So the things that we do for our heart, those are good for our brain. So if you're taking care of your heart, you're taking care of your brain because, really, our brain is a muscle and we need to exercise it. So as we age and we want to lower those risk factors, we wanna make sure that we're exercising our brain. And it's all the same things we would do for our heart, you know, good exercise, good diet, those types of things.
But the things that change a little bit for your brain health would be staying social as you age. Very important to stay social, and that one people don't talk about as much. So we wanna make sure we're doing that.
And also protecting our brain. I mean, that seems pretty, like, no-brainer, but, no pun intended. But that is one for sure.
Melissa: You said protecting your brain is a no-brainer, which... the idea of protecting your vital organs, yes. But how... When you say protecting your brain, does that mean, like, you're riding a motorcycle, wear your helmet, or... what does that mean to protect your brain, I guess?
Jody: Yeah. And when I think about this, I always think about our little image that shows, you know, a bicycle helmet on.
Melissa: Mhmm.
Jody: That's exactly right.
Melissa: Okay.
Jody: You're wearing your helmet when you're riding a bike, maybe your motorcycle.
And, you know, we are hearing a lot of incidences from sports. You know, if you play a contact sport such as... we'll use football as an example. You know, are we doing our best to protect our brains? And that is changing, I think. So yeah. All of those things.
Melissa: Okay. Good. I was like—I mean, I wasn't sure if it was the physicality of it, or if there was like... yeah.
Jody: Yes. You were right.
Melissa: Okay, yay! Is there a difference between Alzheimer's and dementia?
Jody: I am so glad that you asked this question, because this question is the one I get the most from folks, and it can be kind of confusing because I think, you know, someone says Alzheimer's, and they'll be like, "well, my mom had Alzheimer's, but not dementia," and Alzheimer's is a form of dementia.
Dementia is the cognitive loss, and it's affecting daily life. So it's like the broad term, and then types of dementia are underneath. We have this really great graphic that you can't see, obviously, but it's an umbrella term. It's a picture of an umbrella, and Alzheimer's disease is underneath of it. So you'll see Alzheimer's disease, Lewy bodies, vascular dementia... Those are all types of dementia that are under that umbrella of dementia.
Alzheimer's disease just happens to be the most prevalent. It usually accounts between 60 and 80% of all types of dementia. And the thing to remember is that although Alzheimer's disease isn't curable, there are other types of dementia that are. So you wanna be seeing your doctor if you're seeing any signs or you're worried about your brain health. You wanna make sure you're doing that because it could be something else.
Emma: That's really interesting. I didn't realize that— that, like, other forms of dementia are curable and...
Jody: Yeah.
Emma: It's kinda like the whole... makes me think of the whole, like, squares and rectangles, like, one is one but not the other. It's like Alzheimer's is dementia, but dementia is not always Alzheimer's.
Jody: You exact—you said that exactly right, and that's exactly how I explain that.
Melissa: It made me think, too, I have a... I was talking with Emma before, I'm like, "please throw something at me, like a pen cap, if I start oversharing," but I have a family member... I have a family member who has dementia. I don't know. I don't think she's officially been diagnosed, but she was super anxious. And, this family member, they took her to the doctor, you know, because we were concerned about her, and she was deficient in certain vitamins.
Jody: Mhmm.
Melissa: And then I think there were some other factors. I don't know all the details exactly, but I do know she still doesn't remember everything super well. But her... Like, the state of fear and anxiety and confusion that she was in has lessened significantly once she got some vitamins, and I think she has another medication that's helping.
So I don't know officially what kind of dementia she was having, and I don't know how much of it is still there and how much is not. But it is really important, I feel like, to go to a doctor, get the information, because there's probably multiple factors involved in whatever is happening to that individual and what they're going through.
Jody: That's... you... that's a perfect example of making sure that someone is going to see their doctor, because there could be that type of thing going on, a vitamin deficiency.
And maybe there's still some symptoms of dementia happening of some type, but at least we're dealing with the things we can control at this moment. And so that's gonna help, you know, prolong somebody's cognitive health.
And that's when I talked about those things that we can do to help our brain stay healthy. Even if you've been diagnosed for Alzheimer's disease or another type of dementia that isn't curable, those things—keeping ourselves active and social and getting good sleep at night—those things help us keep the cognitive decline lowered. So it's important to do that.
And yeah, UTIs—I'll just bring this up real quick—A UTI can cause cognitive loss, and that's something that we can we can treat. Right?
Or maybe they're not getting enough rest. I mean, how do you feel when you don't get enough rest? I know for me, I don't feel very good. My brain isn't working. And if you want to segue into normal aging... I get those questions a lot. What is normal aging as compared to...
Melissa: Like the difference
Jody: Yes.
Melissa: Mhmm.
Jody: Well, normal aging—I'll speak for myself here. You know, I'm not as fast as I once was, and that's typical, you know, you'll see signs. We have 10 warning signs that you can look up, and I can talk about those if you want.
We can go down the list, but it's when things start to affect somebody's daily life. We all forget names, but maybe you were a person that remembered every name you ever ran into. And now all of a sudden, you're not good at that anymore. Is there something going on?
But you're also losing your keys or thinking your husband's moving your keys everywhere, and it's really you losing your keys... Because we all lose things, but the difference is we're able to retrace our steps. When you have a warning sign, a warning sign is you've set your keys down and you think somebody else moved them or you don't remember putting them there in the first place, things like that.
Bad judgment starts to come up; that's another one. And I can go on, but you guys tell me if you want more of those.
Emma: Oh, I'd love to hear more, actually.
Jody: Okay. I've got them all right here in front of me so I don't forget any. I'm using memory aids is what we say, but I always have. I will mention that's another warning sign.
So it'll... You know, memory loss that disrupts daily life. Maybe you're using more notes or your family members to help you, but I've always used Post-its everywhere. I'm a Post-it person.
Melissa: This is my to-do list. See this giant notebook?
Jody: Exactly.
Melissa: I have a daily to-do list. And not that I don't remember all of the things, but it's so I don't forget one of the things. You know, one of the things doesn't slip through the cracks. So I definitely use memory aid devices.
Jody: So a warning sign would be you're no longer using those memory aids. You're not remembering to do that or you are now saying, "hey, can somebody else make that list for me?" That's a warning sign where something in your normal life is changing. For me, I use Post-its. That's not gonna be a warning sign, but somebody who might have remembered their daily tasks without those lists are using those lists now. That might be a warning sign.
Challenges in planning or solving problems is another one. That would be like, you know, maybe you're not able to plan out your day like you once could. Maybe you're not solving problems as easily as you once could, and you need more help with that, or difficulty completing familiar tasks.
My grandmother had Alzheimer's disease and she passed away from that. And one of the things that we saw before we knew she had it—she was an incredible pie maker, and she made... oh, her pies were so good. It makes my mouth water thinking about it. And she was making mistakes, either overcooking them, not adding ingredients, and that was one of those things that we were like, something's not quite right here.
Confusion with time and place, that's pretty standard that you'll hear about. Maybe they don't know what time of day it is or what season it is, that'll come up. Like, my dad thinks it's funny when I call him, he's retired now, and he says, "I don't know what day it is because I'm retired." But if my dad was calling me and saying, "hey. It's really cold outside and it's the middle of summer," I might start to worry a little bit there.
Trouble understanding visual images and spatial relationships is another one. That's when, you know, we might need to take the keys away from somebody. Their driving starts to change because the spatial relationship, that depth perception starts to change the brain.
Melissa: I had never even connected that one.
Jody: I know, most people don't. Whenever I talk about this one, they go, "oh, I didn't know that."
Melissa: Yeah. I've never heard of that.
Jody: I know, it's crazy, but that's one of them. So that's why we talk about this, so people know.
New—new is the keyword here—new problems in words in speaking or writing. So if you've always remembered names, kinda like we were talking about, and now you don't, that might be something. Or you'll replace the name of something with something. Like, if I'm looking at a window outside, maybe I say, "oh, that clear glass thing I'm looking through." That's a warning sign.
Misplacing things, we talked about that. It's retracing the steps.
Decreased or poor judgment. When you hear about somebody who's given away a lot of their money to maybe telemarketers or been scammed, it's usually the elderly they prey on.
Emma: Oh, that's so sad.
Jody: Right? It's so sad, and that's that judgment that's lacking, not being able to use that good judgment.
And then withdrawal from work or social activities, and I always laugh about this—if you are an introverted person and you're not...
Melissa: You're already withdrawn.
Jody: And you've spent your life not going to social activities, this might not be a warning sign. However, if you are a person that goes and does those things, or you're an introvert but you've always gone to... "I always go to my," I'll say, "rotary meeting," you know, or coffee with these...
Melissa: Or quilting, or whatever it is, book club
Jody: Any of those things and you're not doing that anymore, warning sign.
And changes in mood or personality. Maybe you notice mom is not dressing as nicely as she once did. Maybe her appearance was very important to her, and all of a sudden, not so much. Or her house isn't clean, that could be a warning sign something's going on.
Emma: That'd definitely be a warning sign for my mom. She absolutely loves a clean house.
Jody: Well, there you go. So if you go over to mom's house and it's not clean, and it's progressively getting worse, there might be something else going on.
So there you go, 10 warning signs. If you didn't get all of those, you can always go to our website, which is alz.org, and I think the backslash is 10 warning signs.
Emma: Oh, perfect.
Jody: Put it in there.
Emma: So it's good to know these signs because I've heard getting an early diagnosis is really important. What difference can it make the earlier you get your diagnosis?
Jody: We talk a lot about this at the Alzheimer's Association, and I wanna say that I've been part of the Association in one way or another for the last 10 years. When I first started with them, we didn't talk about this, and now we do. And the reason why is because we wanna make sure that people have a chance to plan. That's a big one. If you've been diagnosed with Alzheimer's and you're in those early stages, you're still cognitively aware of what's going on, and you're gonna have a lot more say in what—in how you lead the rest of your life. I think that's really important.
The other thing is if you're in those early stages, you might have access to new treatments that we have—not "we," the collective we—that are out there.
Melissa: Yeah, yeah, yeah. That are coming out.
Jody: Yes.
Melissa: New research. Yeah.
Jody: There's new research. Maybe you wanna be part of a clinical trial. Some people wanna get involved in that.
It's also that chance to prioritize your health, like I was talking about. Making those changes, kind of like if anybody gets a diagnosis of diabetes or high blood pressure and cholesterol. There are things that we can do to help that, and that also helps your brain, and it can help you save money. Because if you've waited, or a caregiver has waited so long, that financial burden goes up. But if you have a plan in place, you can sort of alleviate those costs and prepare for it.
Emma: How is Alzheimer's diagnosed?
Jody: Well, currently, there's no single way to diagnose Alzheimer's disease. So you might have a physical exam. You'll hear people talk about a mini cognitive test that they get from maybe even just their family practitioner or general practitioner. If, oh, they weren't able to pass that test or we're seeing some concerns, they might get some imaging.
PET scan does find the plaques and tangles that are in the brain. However, PET scans are not readily available everywhere, so not super great way to do it. MRIs help rule out other things that could be going on, but that's not gonna diagnose. And I think that's it, but there might be a couple others. But what I'm saying is it's a group of things to make that diagnosis.
And so what research is happening right now, and what some folks may have heard even through the news is that there might be right on the edge, a biomarker test, a blood prick that the blood would tell us what's going on or be an indicator of, hey, something else is happening. So that's some of the new—very, very new research that's coming out. And if we could get that kind of diagnosis, how much better would that be to start working on making changes in your lifestyle habits? So that's exciting.
There are some... For a very long time, the only drugs that were available were ones that treated symptoms. And so anxiety, like you were talking about, those types of things. And now, there are some new drugs coming out—that have come out. I think there are three officially in the market that are treating—slowing the disease, sorry. And those are also not super out there yet because they're brand new. That's only happened in the last couple years.
Big, big stuff happening. And I could—well, not me really, but we could speak all day on just this topic. If you want more information, then check our website, and we have a whole research platform so people can look into that a little bit more.
Melissa: I'm gonna jump back to kinda different types of Alzheimer's or dementia.
Jody: Okay.
Melissa: What is early-onset Alzheimer's and how is it different from Alzheimer's in older adults? I had never thought of this question until we started researching for questions, and I was like, that's a thing?
Jody: Yeah. It's not as typical.
So early-onset is not any different than regular-onset Alzheimer's. It's just anybody under the age of 65. So when we say early-onset, just know they're under the age of 65. And it's more rare for that to happen, but it is out there. I knew of a person who was in their forties. Yeah.
Emma: Oh.
Jody: Yeah. So it—it's out there. It's just not as typical. It's usually as you age more that risk factor goes up.
Melissa: Is there a typical age or, like, an average when Alzheimer's... or if not, that's fine. I'm just like...
Jody: I actually don't—I don't know the answer to that.
Melissa: Sorry.
Jody: I don't know if I've ever seen that, like, in our facts and figures.
Melissa: And maybe there isn't. Maybe that that's because there isn't. I don't know.
Jody: I know that the risk factor increases a certain amount as you get over the age of 65. And I don't remember those exact numbers, but it, like, significantly increases that risk factor.
Emma: One thing that I read when we were researching was that changes in your brain can start showing, like, up to 20 years before you even show any symptoms of Alzheimer's.
Jody: Yes. I'm really glad you said that, because I probably would have forgotten to mention it. But yes. So there can be no symptoms, but biological changes occurring in the brain 20 years before symptoms start, and we call that being asymptomatic. So why would you go to the doctor or have anybody look at your brain if you have no symptoms? You don't think anything's wrong.
So what we're trying to do is get some of those biomarkers—the blood test, let's say, we'll use that as the example. Because what if 20 years prior, you go in and they go, "oh, man. Yeah. You have this biomarker that's showing that you likely are gonna have Alzheimer's disease. Let's take care of that right now. Let's get you on this treatment."
That's the dream. That's the goal right there, but we can't do that unless we have those ways of detecting.
And then it moves into MCI due to Alzheimer's disease, and that's symptoms of cognitive decline where they start to appear, but that doesn't mean... so there can be Mild Cognitive Impairment. I didn't explain what MCI was, but that's what it is. And that might be a cause of some other type of dementia or something else going on, but MCI due to Alzheimer's disease is where it may develop into symptoms of Alzheimer's.
Then you go mild, where somebody's still functioning, it's just slightly causing issues, slightly interfering with daily activities. Then moderate, where, obviously, a little bit more, maybe more help, more care from the outside, and then severe is interfering with almost all daily activities. And eventually, someone loses the ability to remember how to swallow. And—
Melissa: That's so sad.
Jody: Right? It's so sad. And so yeah. I hate to even talk about it, but it is what it is.
Melissa: I mean, it's important because you don't think about that. You think of someone losing their memory, like, forgetting who people are or forgetting, like, days of the week, but that it goes that far. Like, you forget how to use your body.
Jody: Right.
Melissa: That's so hard.
Jody: And I don't wanna say a lot of the time, because I don't really have any numbers for this, but often if you're forgetting things, and you're forgetting to take your blood pressure medicine or something like that, you know, you may pass away of a heart attack, let's just say, before you get to that place where you're not swallowing. But at the end, yeah, that's exactly what's happening.
Your brain is losing brain cells and it's becoming smaller and not working the way it once was. It's dying. Your brain is dying. It is a disease. This is not—that's one of the misconceptions of Alzheimer's disease is, "Oh, no. Everybody gets that. You're getting older. That's just what you have." It is it is a disease of the brain.
Emma: What are some other misconceptions about Alzheimer's?
Jody: That's the biggest one that I just mentioned, that it's a disease of the brain.
And I think the other thing I hear is, "oh, you know, well, you'll absolutely get it the older you get." That's... or you'll have it. That's not the case. You won't necessarily get Alzheimer's disease.
I think too that people just don't wanna talk about it still. It still has a lot of stigma around it. You know, all forms of dementia—and Alzheimer's disease typically is the one we talk about—and families are embarrassed, or people embarrassed that they have it. They don't wanna recognize it. They feel there's no way to do anything about it, so why would I talk about it? And it can be very isolating.
It's an incredibly isolating disease.
Emma: That's a misconception is that there's not really anything you can do about it, but we know that there are maybe some things you can do about it to at least slow the process.
Jody: Yeah. I would say get diagnosed. Try to get that diagnosis because if there's anything you could do, wouldn't you do it?
You know, if somebody was diagnosed with cancer, most people are gonna do anything they can, and we aren't in a place where we have a treatment for Alzheimer's disease yet. We have some that are causing to slow it. That's great. But until then, if you can make sure your heart is healthy and get better sleep at night, wouldn't you?
Emma: Yeah.
Melissa: Yeah. And I think too what you said a little bit earlier, like, even just planning, like, advocating for yourself knowing that... "okay, I might not be able to do this now or later in the future as well because I won't remember." But making a plan and saying, "no, this is what I want." I think that's important too. Both getting any possible kind of treatment slow it down, you know, anything and making sure that your life is gonna be what it you want it to be in the future. I think that's super important too.
Jody: It's incredibly important to have a little control over what's gonna happen to you, because that control slips away as they go through the process. And this is a very long disease sometimes, I mean, 20 years sometimes for people. It's just... it's just tough. And it's really tough on caregivers.
You know, that is a huge issue for caregiver burnout, and we get that a lot. We hear that a lot. So we wanna make sure caregivers know that there's help for them out there.
Emma: That kind of leads perfectly to our next question. It was how can we support those who are caregivers for those with Alzheimer's disease?
Jody: Well, we can do podcasts like this.
Melissa: Yay, we're helping!
Jody: And I will always share that the Alzheimer's Association has a 24/7 helpline. Notice I said helpline. It's not a hotline, so you don't have to call it when you're just in crisis. You could hear this podcast and call.
It's a national hotline. So if you're in Idaho, if you're across the country, you can call the same number, 1(800)272-3900, and master-level clinicians are on the other end. So you will get somebody to help you.
So if you have a question about yourself, a loved one, maybe you're caregiving and somebody has a behavior that you're just... you don't know how to handle, they will help you through that. Maybe you've been recently diagnosed; you can call, and they will help you plan and put a care plan together.
That's our resources. There's multiple resources in the communities. You just have to kinda know where to look.
Offices on aging often have a lot of resources. There are caregiver support groups. We have caregiver support groups, the Alzheimer's Association, but other entities have them as well. And it's reaching out and finding how can you get help. I know there's some respite programs. The Community Care Program throughout the state of Idaho is fantastic. That's another great resource, and they offer case management and respite.
So yeah. If we could just get people to say, instead of saying to me, which I hear a lot, "I wish I would have known about you sooner." I might tear up right there because it happens all the time. And my job is to make sure that folks know that these resources are available to them. So I'll do whatever it takes. Okay, maybe not whatever, but I will do—I'll do what I can.
Emma: We talked about keeping your brain healthy by protecting it, like, with a helmet and things like that, but also, like, kind of less in a physical way and more of just a, I don't know, like learning new things or, like... because your brain is a muscle, what are ways you can work that muscle?
Jody: Alright, so going back to reducing the risk of dementia—I mentioned earlier that, you know, we wanna take care of our heart, and there are a couple things that set your brain muscle health apart from that, and that was to stay social and challenge your mind. So I think a lot of times we hear people talk about, "oh, I got—I'm super into Sudoku." Sodu... How do you—I never say that right.
Emma: Yeah, the Sudoku?
Jody: Sudoku. Thank you. That word, that game.
Emma: Mhmm.
Jody: Oh, that's...
Melissa: I didn't say it because I can't say it either.
Jody: I can't say it.
Emma: I don't know if I said it right.
Jody: I don't think I've ever said it right.
That's great. But if you do it all the time and you just whip them out, that's not really challenging your brain anymore.
So you want to try new things. Learning another language—Oh. Hugely helpful to your brain. Learning a musical instrument, great for your brain. There's a lot of research behind those types of things. Got to exercise your brain, yep. It's a muscle.
I say stay in school, but what I mean is learn something new, anything new really. Go to a class, participate in something, then you're being social and you're learning something new. It's a twofer.
Emma: I kinda wanna learn something old because I haven't taken a math class since my sophomore year of high school. So maybe I'll go back and relearn.
Jody: Maybe you need to take another math class.
Emma: Gotta relearn my geometry.
Jody: Yes. Yeah, all of that. You know, all of this—get moving, sleep well, be smoke free, if—you know, that's kind of a... I keep saying no brainer. But trying to eliminate smoking, just another reason, not just for your heart, but it's now for your brain.
So if you're like, why would I bother dealing with my high cholesterol? Well, maybe you should because it's affecting your brain too. So all of those things work.
Melissa: I definitely feel like... just as we've done episodes and talked about different diseases and health topics, everything is so connected, like being social and learning things and taking care of your body. It all helps. Like, it helps your mental well-being. It helps your physical well-being. So I think it's just, I don't know, super important to take care of yourself.
Jody: Yes.
Melissa: I don't know, sorry. That's a blanket statement.
Jody: We just need to take care of ourselves.
Melissa: Not to dismiss that it's not—it is hard to do that. Like, it is. I was for like... let's see. Maybe, like, 4 months ago, I was exercising fairly regularly.
I've completely stopped. Like, I'll occasionally go on a walk now, but, like, I used to be doing yoga and going for a jog. Not doing that as much. I got lazy. You know?
So it's hard. It's hard to do it, but it's worth it. And it does make you feel better.
Jody: Yeah. I mean, if you exercise, your endorphins are up, and you're just feeling better in general.
But, yeah, we all get busy... and my risk factors, I feel, are pretty high. I'm a woman. Two thirds of people with Alzheimer's disease are women. So my risk factor goes up. It runs in my family, so that is a risk factor. I'm getting older. It's happening. That's a risk factor.
So at this moment of my life, I am like, alright. I better get on something here. Maybe I'm gonna learn a new language. I gotta take care of myself.
Emma: Kind of along with taking care of yourself—because we talked about what resources there are for caregivers, but what are some other ways maybe that they can make sure as they're taking care of someone else that they're also taking care of themselves?
Jody: We want to make sure caregivers are supported, and I have participated in caregiver support groups multiple times. And one of them, we, you know, we were discussing caregiver self-care and they all laughed. And it wasn't in a funny way. It was, "yeah. Right. Like, how am I supposed to do that? I am caregiving 24/7. How am I supposed to do that?" And we shared what that could look like and how do we use our surrounding network of friends and family to help us, or just the community in general.
Maybe you're... you are isolated from family. Maybe you live far away. But how do you build that support team around you? And, again, this kinda comes back to that early diagnosis and planning for the future, but you can still do it if you're in the thick of things. Who can I bring in to be a support person? Can somebody run and get my groceries for me? It can be as simple as that, asking for that help.
Maybe it's somebody who comes in and sits there and has coffee while you run to the store. Is your daughter in another state, but she understands when you call to share what's going on with your husband, that's all you're doing and you just need her to listen? Can you set that up? Can you find a way to go get a massage, you know, once a month, get a friend to come over, anything that you can do.
Because if you're not taking care of yourself as a caregiver, you're absolutely not going to be doing a good enough job for the person. And what we do hear about is that burnout and caregivers getting sick and even dying before their loved one.
Melissa: I feel like I've heard that statistic before.
Jody: Yes.
Melissa: There's like a—I don't know the numbers, but that sometimes the caregivers pass away before the person that they're caring for.
Jody: Yes.
Melissa: Which is not good.
Jody: No. It's not good. So we wanna do everything we can to help caregivers. I do an empowered caregiver series free to the public. I put those out for folks. There's some other organizations that do other caregiver-specific programs to help caregivers. We wanna make sure people know those are around and there's help out there for them.
Melissa: They're not alone.
Jody: No. You're not alone. It's the hardest part.
Melissa: With that, how can Alzheimer's affect family dynamics? And how can families manage that emotional toll or that change in the family dynamics?
Jody: Okay. So this—this is so hard because it does change dynamics. And especially as the disease progresses, it really changes things. It's not just the dynamics between... maybe the husband has the disease and the wife is caregiving. That relationship changes, and it can really affect a relationship.
Families will pull away. Friends will pull away because they're not sure what to say or do, or the caregiver and the person with the disease, they pull away because they're not comfortable in social settings anymore. So what you wanna do is try to alleviate some of that.
And so as a caregiver, you might reach out to your family and friends and say, "hey, you know, I know this is weird. It's scary, but so and so is better in the mornings. Can you come over for coffee instead of dinner? Can we not do family dinners anymore at night? It's just not a good time. Can we do Sunday brunch instead?" or whatever that looks like.
"Are you wanting to help? Because I need some help with this."
Really letting people in your circle know the changes are coming. Christmas is not gonna look the same, or any holiday. It's just gonna change. And so if you have that expectation and you know that's important, knowing that those things are gonna change is key and just try to get through them and communicate. I mean, we talk about that all the time, right? This one, you gotta really communicate what's happening and what you need.
And, "hey, I don't know. Dad was kind of weird when I was over last weekend. I don't even know if I wanna come by anymore."
Okay. Well, how do we, how do we deal with that? What does that look like now? "What time did you come? Maybe call first. Let's see if it's a good day or a bad day." Does that help?
Melissa: That definitely helps. Yeah, no. And I was just... yeah. I was thinking about the family member with dementia and when it was bad and I had a phone call interaction that was... I hung up and I was in tears.
But now that it's, you know, under control and better and, like, just understanding, like, it wasn't really her in that moment. And so, like, I still love and care about her. Obviously, I didn't stop in that interaction, but it was just that... that shock of, like, what just hap—like, understanding that, yeah, you gotta be aware of those changes, because I wasn't expecting it.
I was just calling to be like, "hey. How's it going?" And then bam. And it was—it was scary.
So I think, yeah, knowing and preparing, like, okay. There might be these interactions, but like you said, like, maybe there's a better time, or kinda give a little warning, a little preparation, so that you can still... you can still have those relationships, because they're still important and they're still...
Jody: They're super important.
Melissa: Like yeah. Yeah. Sorry. I don't know if that was helpful at all or added to the conversation.
Jody: I'm glad you're sharing, because these are the things that we hear about a lot, and you may even be saying, "well, how can I help?" Well, remembering this is not who they were. Their behaviors are changing, typically will change, and especially as the time goes on. So remembering that, not taking it personal, although that's hard.
Melissa: Yeah.
Jody: Sometimes, we have to join the person in their reality because their reality is not the same. An example I would give is the person with the disease is telling a story, and the story is inaccurate and everybody knows it. Is it really that important to correct it?
Melissa: It's not, it's fine. Just let them... yeah.
Jody: Let them tell their story. If it's something that serious, pull everyone to the side later and be like, "yeah, no. That wasn't who they said it was. It was somebody else." Stuff like that.
I think we wanna try to let them be as independent as possible, continue to do those social activities, respect them still. There's still a person in there.
But you can also do things like, in your communication, you're keeping your questions more simple. Let them process what you've asked them. Don't be like, "oh, hey, grandma. Oh my gosh, it's so good to see you. Oh, are you gonna come to my game next weekend? And have you seen so and so?" Slow slow. They—that is so overwhelming. They cannot process all those questions quick enough.
So slowing down, asking simple questions, make it broad, smile. A lot of times in those later stages, they still get the feelings. So if you're smiling and you have the tone of voice, that's helpful. All those things are helpful.
Emma: That is helpful. How can one become involved in supporting those with Alzheimer's, and how do donations help?
Jody: Well... okay, so there's a couple of different ways that you can help. Obviously, we talked about ways that you can help support a family member. If you're looking at ways in helping the Alzheimer's Association do our work... We are a national organization, and we are the largest nonprofit funders of research in the world. We are number three funders of research, behind the United States and the government of China.
Funds that you donate to the Alzheimer's Association go to that, but what they also go to what we do in the community care and support wise. They help fund the helpline, things like that. We're advocating for the disease at the state and federal levels. We're doing that kind of work. We're talking about those early detection. We're funding that research. That's all really good stuff.
I don't know if either of you have ever heard of the Walk to End Alzheimer's. So the Walk to End Alzheimer's is our largest fundraising event in the community. That's our big fundraiser, but it's not just that. It's an awareness piece as well. We have close to 200 walkers come out. 600 cities across the US, 4 here in Idaho, and it's a place to share hope and resources, and it's just a lovely day. If you've never been, you should go.
The other way you can help me is we are a volunteer-driven organization. I reach more community when I have volunteers to help me lead education for the community, lead support groups. Maybe you just wanna help me table at an event, stuff like that. What else? You can become an advocate. Those are all the types of ways you can help the Alzheimer's Association specifically.
Melissa: So if you have a loved one or someone you care about in your life, could be family, friend, who is kind of showing some signs of Alzheimer's, what's the best way to maybe encourage them to see about going to a doctor? Because I think that could be a hard situation if they don't wanna go, but you don't wanna force them, right? But you wanna help them. So how does one handle that situation the best they can? What's some advice? Obviously, each situation is gonna be kinda different, but maybe what's some advice that you would give?
Jody: Yeah. It's a complicated question, but that's the one... we do get it a lot.
And you're absolutely right. No person living with Alzheimer's is the same, so it's gonna look different for everybody. But I would say if you're having a challenge in getting your loved one to the doctor, first of all, use our 1-800 number because they can help you put a plan together.
But off the top of my head, maybe it's not the wife that talks to them about this—maybe it's their best friend. Is it only you that's seeing concerns causes for concern? Or are you talking to other family members and going, "have you have you noticed something going on?" So you wanna look at that.
When is the best time to have that conversation? Is it in the morning? Is it in the afternoon? I mean, those are all factors.
There might be something else going on. So you could say, "hey. I've noticing whatever change. Let's go in and make sure that, you know, your blood pressure looks good. I think we might need to do a an overall checkup." Let's do that to get them in.
There are multiple ways to go about it, but those are just a couple of examples. And we have all this on our website too, and you can call the number and they'll help you through that. It can be very challenging. It's tough.
Melissa: That could be hard.
Jody: Oh, it's so hard. I mean, it just came up the other day. Like, "I can't get him to go to the doctor." Okay. Well, let me get you to somebody who's really good at this stuff.
It's really just, like, changing our brains. Okay, well, I can't do it this way. This isn't working.
Melissa: A new approach, yeah.
Jody: How can I approach this in a different way?
One of the people I was talking to said that their husband had, like, a cut on his hand that was kind of infected, and she used it as an excuse to get him to the doctor. She's like, "oh, I think that's really a bad infection. We should go." And he went for that, but then was able to, "can you check on this also?" There might be some side conversations happening with the doctor. "I think you need to check on this." Unfortunately, we will say little white lies are kind of okay in these situations.
Melissa: You're still respecting their choices and decisions, but you're like... like you said with, like, if they're telling a story and it's not true, like, it's not gonna hurt anyone or anything if you let them tell the story how they think it's supposed to be.
Jody: Exactly.
Melissa: I think that's a great example.
Jody: Yeah. Why argue?
Melissa: Don't—don't make them feel like they're less or incapable.
Jody: And that is so hard sometimes. You know, when my grandma would talk about stuff and I'd be like, "uh-huh, okay..." you know.
And I didn't know anything back then. I was really pretty much clueless, and we all were. Our whole family was. And I said then, I wish I would have known about the Alzheimer's Association back then, because we had no idea what we were doing. We were just trying to keep her at home, and my mom and her sister were just doing the best they could. It was tough.
Emma: That is tough. And now, here you are!
Jody: And now, here I am. I had no idea.
Emma: Sharing with a lot of other people
Jody: Yeah, so.
Emma: Is there anything else that you would like to share about Alzheimer's disease?
Jody: Man, we covered a lot of stuff. I know some of these topics, I actually do full, like, hour-long presentations about. So tried to get what we needed to cover, but I think we got it, and obviously folks can call that 1-800 number or go to our website for any questions they might have.
Melissa: Thank you so much for coming in today, Jody. We've appreciated your time and your experience and knowledge that you shared with us.
Jody: Thank you so much for having me. I appreciate it.
Emma: If you've enjoyed today's episode, please remember to share, subscribe, and rate the Riverbend Awareness Project. A big thank you to Wackerli Subaru for sponsoring this episode.
Melissa: If you'd like to send us an email, you can reach us at podcast@riverbendmediagroup.com. Thanks for listening and join us next time on the Riverbend Awareness Project.