Dementia vs. Alzheimer's: Early Onset, Early Stage, and What We Had to Unlearn

In this episode, we start to unpack all the things we had to learn and unlearn about Alzheimers.  In this episode we'll talk about the differences between Alzheimer's and dementia, and the differences between being in the early stages versus having early onset Alzheimer's. We also share where things stand with our mom this week- because it was a hard week. The more you know, the more empowered you are to care for your loved one.

If you're in the thick of a new diagnosis and still trying to make sense of the language around it, we hope this one helps. You're not behind. We're all just figuring it out as we go.

Transcript

SPEAKER_01 0:00

Welcome to Conversations Through Alzheimer's. I'm Amber Marty and I'm Felicia Wood. We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025. We're documenting her journey as it happens and we're sharing every resource we find along the way. This is her story and ours.

SPEAKER_00 0:18

Thank you so much for joining us today. Today we're going to be talking about the difference between dementia versus Alzheimer's, what is early onset Alzheimer's versus late onset, what is the difference between early onset and early stage Alzheimer's or early stage dementia. What we learned very quickly when our mom got diagnosed is that there was a lot to learn about what dementia means for individuals and how to interpret when people are talking about memory loss. And so we're looking forward to today's conversation. We wanted to start out by just kind of having a little bit of a moment of reflection around what we thought Alzheimer's was before we actually had real life experience with it. So, Amber, do you, what did you think Alzheimer's was like years ago before?

SPEAKER_02 1:08

Well, the only thing like I didn't really know anyone that had it, as not a lot of people who are young do. So the only thing that I really knew about it is what I saw in like TV shows. Like, so for a couple of things, like a couple of shows come to mind, like Gray's Anatomy, for example. Um, you know, her mom, Meredith's mom, has Alzheimer's. And I think it's like in the work first few episodes, she gets a call saying, like, your mom is like basically like coherent today. Like she's she's asking for you. And this is the first time in months. And at this point, her mom's in a memory care facility or something like that. Um, but she knows to like get there right away because she's knows these moments are sparse, so to speak. And basically, like you don't know how long it's gonna last. And so, like, I thought like Alzheimer's patients just forget who everyone is, they don't know where they are, who they are, and but occasionally it just comes back and you just have to hope you're close enough to be there.

SPEAKER_00 2:04

Yeah, you know, it's so interesting because it made me think of the notebook also, because in the notebook, Allie, I think that's the character of name, has Alzheimer's does I don't actually remember if like she was diagnosed with Alzheimer's. Alzheimer's is Alzheimer's, but a couple of months ago. You know, there's like that whole kind of it is kind of, I feel like a lot of the movies and stories and TV shows are kind of wrapped up in exactly what you just described as like somebody who's going back to times in the their past, like they're kind of floating into remembering who they used to be or what was happening when they were younger, but not having a lot of memories of what's happening now. And so you don't really get the whole picture of like all of the other pieces of what is happening to the brain or cognitive decline with that, because you really just think of it as like only memory loss. You know what I mean?

SPEAKER_02 2:55

And I think that the show This Is Us did a little bit of a better job. Like I remember because that show, for anyone who hasn't seen it, kind of goes back and forth with like her in this in the 1970s versus her now. And and so you kind of get to see like both sides, but like so they kind of showed her getting it in the like earlier stages, and it was like she was out to dinner and then she suddenly didn't know where she was and was very confused. But I think they very they simplified it quite a bit. Like, you know, I I don't think you just wake up one day having Alzheimer's and don't know where you are. Like it's not just like as straightforward.

SPEAKER_00 3:30

I would say that, like, and it's been a long time since I've seen this as us, but I was thinking about that example too, because I feel like in a lot of media it's represented as like it jumps very much to the late stage. Yeah. I don't remember where I am, I can't take care of myself. I'm in a memory facility. I have no idea where people are. I do feel like you're right in the terms of like, I remember the episode where like Becca started to realize that something was going on. And I think only one of, I think it was maybe Randall, like one of the kids, like started noticing like she was either kind of like not quite acting herself or whatnot. And I do feel like there were some real life pieces like that we've actually experienced like, how do you get your family on board with realizing what's happening? Or even them like feeling scared, like going to the doctor, realizing you have it, starting to make plans for like what is the future going to look like, and trying to even advocate for yourself. Like, I think there was a couple episodes where like Rebecca was like, Well, I'm gonna try to figure this out for as long as I can, and like I can be kind of independent. So, like that's probably one of the better ones that I've seen in terms of like not just only jumping to late stage, but trying to get a peek of it. But what I what I think we we learned for sure is there's a lot more to it. The symptoms are much more vast, more global than can be easily depicted. And that also makes it really challenging when you're like in your day-to-day life and just like, you know, it comes up in conversation, like, oh yeah, like, you know, my mom has Alzheimer's disease or was recently diagnosed with Alzheimer's and usually get people say, like, I'm sorry. But like it's it's almost like hard to even begin to have um like a truly a true connection in that conversation because a lot of people don't understand like what that means because they're just jumping to that that late stage idea that's been kind of painted as well. But do you think do you think that's accurate?

SPEAKER_02 5:30

Yeah, like I think a lot of people, unless they know they're in the thick of it too, which those people have a different response than people that don't, because they know it's like a it's like a secret club. Like once you're a part of it, you kind of understand, like you're like, oh yeah, like I've I've been there. I've been there. Yeah. And so I agree.

SPEAKER_00 5:47

Yeah. That's kind of the interesting part because the other thing that I've noticed, and and again, this is probably not something to be like a stickler about. And I one thing that like listeners will probably learn about me potentially is that I can take things very literally at times. Like I can get really stuck on like what definitions are and like things that like don't qualify. And one of the examples of this is like when a lot of our doctors that mom has been working with have said, you know, does Alzheimer's run in your family? Usually like the the typical answer has been yes, Alzheimer's runs in our family. And what we found out, kind of found out, uh, through mom talking to one of her first cousins, whose dad, our uncle, our great uncle Ben. Anyway, he had very significant memory loss towards the end of his life. And we all called it Alzheimer's, right? Oh, Uncle Ben has Alzheimer's. But then we found out from this conversation that like he was never actually diagnosed with Alzheimer's. He definitely had dementia. Like he had some kind of memory loss, confusion, difficulty with daily tasks, changes in his personality or judgment. But like he didn't ever have like a formal diagnosis of Alzheimer's. And then we started to kind of dig into the rest of like the family history with this. And, you know, it's probably pretty likely that it likely was Alzheimer's given 80% of dementia cases are Alzheimer's. Right. But there is what we didn't really understand is like there is a difference between dementia and Alzheimer's. And you'll get a lot of people that will be like, my like I've seen it both ways where people like, though they didn't have Alzheimer's, like they have dementia. And you're like, Well, have they ever been tested for Alzheimer's? No. They're like, well, then how do you know what what the reason is behind their memory loss? And then opposite way too, where people will be like, like with our family, like, well, Alzheimer's runs in our family. You're like, well, did you ever get tested if it was that disease? And a lot of times, like what we found is like in later ages, like especially in like late 70s and 80s, like they don't always do a formal test to find out what is like the root cause of the dementia.

SPEAKER_02 7:59

Well, I think at that point, I think, yeah, because I think at that point, like they're not eligible for like IV infusions, like anything that is like treatment-based, you have to be in the early stages. So if you are presenting so strongly that like the doctor doesn't even need a test, like you just can do go to a doctor's office, do like a like, you know, draw the clock, answer, repeat these five questions. Like they have a variety of tests. If you score so strongly on that, I think they just classify it as dementia because like there's nothing that can be done. Like you can go to a memory care facility, can be try to be comfortable, you can have somebody care for you, but like it's not like we can like get you on medications or get you in clinical trials or anything. So I don't think they recommend spending the money on lumbar punctures or pet amylote scans or um anything like that. Because there's kind of no point when it's that advanced. Yeah, it's I mean function.

SPEAKER_00 8:47

Yeah. Yeah. I mean again, we are not doctors on this podcast. We are daughters who have a mom who has Alzheimer's, and we are trying to figure out what all of these distinguishing things are. So I thought we would kind of like just at least like say a definition of dementia and then what Alzheimer's is, and then kind of try to give a metaphor in case that would be helpful for anyone who's like also kind of unlearning or learning this. So dementia is not a disease. Dementia is the umbrella term for a set of symptoms that include memory loss, difficulty with daily tasks, changes in personality, anything that's severe enough to interfere with daily life. And actually, I will say when we met with a neurologist for my mom, she actually explained it really well. She asked us the question of could you leave Rose for 30 days in a house by herself and she could 100% take care of herself? She could know how to get herself food, she could take her medications, like everything that exists today has to exist in this world. And she can't phone a friend, she can't have somebody reminding her of these things. How well could she do with those things? And that was, you know, we kind of all had to reflect on that for a moment. And my answer to that was like, I would say she would be 90% there at that time. Like she, she would be able to get herself probably some food. She might miss a couple meals, but she definitely wouldn't die of starvation. Like she would remember to eat, she would remember to sleep, she would take showers, like she could even potentially like take care of her dog. But the piece that kind of said, no, she couldn't 100% do it is just confusion around like medication, what day of the week is it? Like finances, finances, yeah, just being able to make sure that like she knows what's coming from where and not getting those things confused. And she said, okay, so as soon as you cross into that barometer of no longer being able to 100% live your life, like she was like, that's what we call dementia, like early, like when you're at crossing that threshold, you're in the early stage of dementia.

SPEAKER_02 10:59

Or not clarify, but to add before dementia, they call it MCI, which stands for mild cognitive impairment. Yeah, MCI stands for mild cognitive impairment. And that is what they diagnose if you are having some difficulty with language, if you're having some like dementia-like symptoms that you can 100% be on your own for 30 days. So as soon as you cross into that, you can no longer be left alone in a hypothetical world for 30 days. That's when it's dementia symptoms and they would in the early stages of dementia. Yeah. And you they would pursue probably like the P Tau test, the diagnostic. Yeah, the diagnostics.

SPEAKER_00 11:41

Exactly. So this kind of leads to the metaphor because dementia is kind of like a fever in a in a because a fever is not necessarily what's wrong with you. A fever is a symptom of something that is wrong with you. So a fever is like you, you know, something is going on here, but a fever can be the flu, it could be an infection, or it could be something else entirely. And that's kind of where Alzheimer's fits into this is Alzheimer's is a cause of the fever in this analogy, which is dementia, because Alzheimer's is a specific disease that causes dementia. It is the most common cause of dementia. Like you said, 60 to 80% of dementia cases are Alzheimer's, but it has a distinct biological mechanism. It's caused by abnormal protein buildups or amyloid plaques and tau tangles that damage and kill brain cells over time. And so I think that is the big, biggest distinguish, distinguishing factor there. And there, because there are other causes of dementia. There's vascular dementia, there's dementia with Lewy bodies, there's frontal temporal dementia. And then there's even other conditions that can have dementia-like symptoms attached to them too. So it's, I think that's one of the reasons that it was really important for us to continue to pursue, especially as my mom is on the younger side. She was diagnosed with early onset, which we'll get into here shortly. But we wanted to make sure we understood why this is happening. Like we knew if you if you haven't had a chance to listen to the earlier episodes where we go into like the entire history with how she was diagnosed, we had to pursue it pretty aggressively. And first there was like the neuropsych evaluation where she had mild to moderate cognitive impairment, which led to the test that ended up diagnosing her with Alzheimer's. Is there anything you would add to that? Do you feel like captured that pretty accurately?

SPEAKER_02 13:37

No, I think that is accurate. I think the other analogy we were talking about is just like what how people kind of interchange Alzheimer's and dementia is like Kleenex versus tissue. Yeah, exactly.

SPEAKER_00 13:51

Like Kleenex is the brain tissue a Kleenex, even if it's just like targeting.

SPEAKER_02 13:56

A dollar store. Yeah, exactly. So it's kind of the same thing. Like people say, like, oh yeah, my grandma has dementia when she could have Alzheimer's, or you have, you know, like so it was just kind of a another interesting analogy for people to think about. Yeah.

SPEAKER_00 14:10

I think it's important to rem like remember and zoom out. Like if somebody says like they know somebody with dementia, like it's not like you have to really drill down, well, do they have Alzheimer's? Do they have a different kind of dementia? Like that's not really what matters. What matters is like knowing, just knowing, I think just the difference in the kind of dementias that are out there, what causes dementia. And then of course, like we do kind of all know what the kind of catch-all is, which is that somebody has some kind of memory loss or cognitive decline that is affecting them and and affects their family. Like, there's no way that somebody can have a disease like this and it doesn't affect the people that have known and loved them.

SPEAKER_02 14:49

So well, and I I think the only thing that I would add is the only reason like it's really important to narrow down, like if it is Alzheimer's or Louis Body or whatever type, is if they're in the the early onset, um, which like Felicia said, we'll get into. But because for a lot of the early stages, at least for Alzheimer's, I can't speak to any of the other dementia type diseases. Um, but there's clinical trials, there's medications you can take orally, there's infusions. Like we're gonna have a whole episode on all of the medications and everything that my mom has tried and been on and everything. But like that why that's why it was so important to us to get a diagnosis early so we can hop on what the train of what potentially we can do to exactly.

SPEAKER_00 15:33

That's exactly right, because there would be very different treatment protocols for solving any of these different potential things. And again, we know nothing about the aspects of dementia because we've only been trying to learn about Alzheimer's. Um and and you're exactly right. Like we one of our first questions when my mom got her Alzheimer's diagnosis was okay, now what can we do about it? What medications can she be on? What clinical trials can she participate in? We didn't even know about the IV infusions really until six, seven months into the entire journey. So um I think that that was surprising for us too. And like, I think Alzheimer's is actually one of the things that, like, while we've been trying to wrap our heads around this as a family, we feel like there is some hope with Alzheimer's, like research that has been done, treatments that have been moved ahead. There's a lot of information out there. There is a lot of support on like potential other diseases. And so we're grateful for that. We're great, especially that, you know, it's happening now while there are some options versus 20 years ago when like there may not have been that same thing, right? And so we're trying to take that as well for what it is. And we're grateful that my mom was diagnosed in early stages. But that kind of brings us to the next segue, which is like early stage is not the same as early onset. And you'll hear people say, like, like our mom, she was diagnosed with early onset Alzheimer's. And a lot of people, I did. I thought that meant early onset, it's happening to you early stages. What we found out is that is not accurate at all. Early onset is completely different from early stage. So, do you want to describe what early onset is? Yeah.

SPEAKER_02 17:22

So early onset is characterized by being diagnosed under the age of 65. So, um, like in my mom's case, she was 60, I believe, when she was diagnosed. She was 61. Um, so she qualifies for that status of early onset. Based on her testing and her symptoms, she also qualifies as early stage. It depending on who you ask and the research you do, like there's either seven stages or three stages. Early stages basically just means like they can still drive, dress themselves. They're they're basically very independent still. They don't need to be cared for. Like whoever's caring for them can still go out to the cabin for a few days, or they could um, you know, run to the grocery store or anything like that. I I think once it goes to that like that middle stage, like what is a early moderate, severe is what a lot of people say. Like moderate is like you're still at home, but like maybe you can't drive anymore. Maybe you need assistance, you know, going to the bathroom, things like that. And then severe is like you're probably gonna be going to a memory care facility because you're no longer safe in your house. And so, like, that's how that is kind of classified. So my mom is both early onset and early stage.

SPEAKER_00 18:36

Exactly. Like, I think the simple way to think about it is early, like early or stage is how far along in the disease you are in terms of progression, but onset is describing how young a person is. So you could be 80 and an early stage, or you could be 40 and have early onset and early stage, or early onset with late stage. Um which it just kind of depends. Like the onset part is really like how the disease is behaving biologically at your age. And one thing that we found out that I don't think we've had the chance to do much research on at all is like, what are the differences and why does early onset happen to some people? Like we found that there are certain genetic types that are almost always show up as early onset. Our mom is not actually one of those. She hasn't fallen into that category. So that was there was a period of time where we didn't know what her genetic testing was, and we were wondering about that. With my mom's early onset, there was, there was a gap in time where we weren't sure why did this happen to her at an early age. What would that, what does that mean for us, for our future as well, in terms of like what's happening genetically? Then we found out as we started to pursue things like the IV infusions, like that people with early onset have different markers and and different um potential outcomes for the treatments that are out there. And so, like even more particular testing has to be done in terms of evaluating her candidacy because of how young she was when she got diagnosed with this. And what's crazy in our case is that, you know, mom wasn't in her 40s or 50s. She was very close to that cutoff. And I think that that kind of further puts her in a little bit of that gray area in terms of, I mean, it's not, it's very black or black and white for early onset. It's you're either younger than 65 or you're older. But it does make you wonder like, what would have happened if we would have just kind of let life happen and not pushed for a diagnosis and kind of accepted it as old age or accepted it for where she was. And then, you know, it seems like these days, like a year goes by like that. And what happened if we waited until she was after 65? Technically, she wouldn't have been diagnosed with early onset Alzheimer's, even though she would have been having all of these symptoms. And it makes me wonder like how many other people are out there potentially going through this exact same thing and not having the diagnosis.

SPEAKER_02 21:10

Well, I remember something me and you were talking to dad about because he was like, you know, even if it is Alzheimer's, because you know, he really didn't believe it. Even if it is, why are we rushing? Because we said, like, we need to get into a neurologist immediately. We need to like we're very proactive about it. And he was like, Why are you rushing? Like, this is so stressful. Like, there's there's let's slow it down. Let's slow it down. And I was, and and I remember you telling him, like, dad, you realize because she's under 65, she can qualify for disability if she does have Alzheimer's. She hasn't been able to work for years because of this. So, like for anyone listening, like that's another like if you have like a parent or a sister or a sibling or something that'd be going through this and you're fighting for this, and they maybe haven't worked in a while, and it's probably because of this, that is another reason to go get tested. And and well, we might eventually go into how disability. Disability has not been an easy process, but um but it's worth trying to fight for it because it is a real disease and Alzheimer's and the real disability. Yeah, exactly. And Alzheimer's disease is actually on the disability compassion list, is what they call it. It's like a list of like five diseases where they're supposed to like expedite it because they know it's basically terminal. There's no cure for it. And so if you do get diagnosed 465, you can apply for that. And that's just something I wanted to point out to people.

SPEAKER_00 22:29

No, I think that's a really, really good point. And that's another thing. I mean, gosh, all of this is also connected to each other because it's also part of the reason to be informed, right? Like if you you do not know what you do not know, we wouldn't have been able to kind of piece all of these pieces together. And it's another reason why we feel so passionate about sharing this example, uh these examples from our life and our experience with others, because what you just said is a really important point. Not only is it important for people who are literally having this disability, I think one of the hardest parts about Alzheimer's is it happens like relatively slowly over time. It's kind of like that whole like frog in the pot analogy where or like, you know, like you you put a frog in a pot and you start to bring the water up to boil, the the frog doesn't know that the water is now boiling. And then yeah, it's a sad story. It's kind of the same way where it's like it's really easy to neglect the symptoms over time and not really realize how much it's progressing, how much has changed, how much they stopped doing. Like I think back to mom, and I think like she used to love to plan trips. She used to love to go out with her friends. She used to love to make connections, and she was like pretty outgoing in a lot of ways. And very slowly, very slowly, it was like not doing things as much, not like starting to drop out of things, like spending less time with her friends, not traveling, not wanting to go anywhere, not planning things. And like again, that would have been and it was for a lot of years. It was easy for us to say, COVID happened, no, such and such. She knows she's getting older, like people change. No, that's not why. Those things were happening because she has a progressive neurological disease that is changing how she feels comfortable interacting with the world. Because of because of that, like it, there are things that she can no longer do. Even if she she did lose her job back in 2019, I do believe there were symptoms that were happening at that time that contributed to that. But what we know now is like there were a lot of years where, like, mom, you know, like you could apply for a part-time job. You could, you know, let's get you on LinkedIn. What we had no idea of is how impossible that was for her brain to figure out how to set up a LinkedIn profile to know how to resume after 40 years. Set up a resume. And I remember thinking, like, you know, like, gosh, it's not, I mean, I never thought bad at her of her for any of that. But there was a part of me, like a sidetrack that was like, you know, mom, like, can't you Google like ways to influence like spruce up your LinkedIn profile? Like a lot of people who have do not have a neurological disease could easily do that at in their 60s to try to figure that out. Mom could not do that because she does not have the same executive functioning capabilities as she used to have. And I think that's the really important piece of the puzzle and why it's so important, like you said, to stay on top of it and potentially either get the diagnosis, pursue, pursue your medical team taking you seriously. If you say something is wrong or there are symptoms, like don't let people push it off is just she she literally could have spent another four or five years just being told it's just anxiety. You need to get your emotions under control. It's just you're just getting older. And that while that is 100% not true, and we know it's not true because we have now two different evidences of her being diagnosed with Alzheimer's. Well, and a little bit of a soapbox, but we both can do that.

unknown 26:14

Yeah.

SPEAKER_02 26:14

I was telling my sister today, I got my hair cut today, and I spent the whole hour telling my hairdresser all about Alzheimer's and just went on a soapbox. And that like all this season, I'm like, I should probably like get that under control. But when you're like passionately learning about something, it's so interesting. Like the more you know, you're like, the you I feel like we don't know so much about the brain, but anyway, I can go out on a tangent on that. Okay. So I we're gonna talk about this in a later episode, but as my sister uh as Felicia talked about, my mom is trying to see if she's a candidate for these IV infusions to remove the amyloid plaque in her brain. And with that, she had to get a lumbar puncture done to like that's the gold standard confirmation if you if you have Alzheimer's. And so she did that this week. And so we throughout the week we've been getting um the test results back. I we got the like the actual like spinal fluid part of it back last night, and it basically shows you like how much tau and how much protein. Like I I I couldn't tell you exactly what it tests, but the tau they're testing like the tau and the protein, and basically the ratio of it, and like if you have a low this and a high this, that indicates Alzheimer's. And basically it said it was like four times the normal amount for one, three times the normal amount for another, and then like the other one is low. So like she has has Alzheimer's. And I was talking to Claude about it. That's my AI of choice. And I was just, I was basically like asking questions like with protein like this high, like I know you're not a doctor, but like, could you tell me like how long you think this could have been developing and like when her symptoms like could have been started based on this? And it basically said like with levels that high, because it accumulates over time, it most likely started in her late 30s, late 30s, early 40s, and symptoms would have appeared as early as her early 50s.

SPEAKER_00 28:05

Yep. Yeah, I 100% believe that just knowing mom and knowing our lives and yeah, I I think that is crazy. Like that is just and you know, I I will say, I mean, there's so much that we could share, but like and I don't I again I don't want to get emotional or like upset, but like I wish that we could just make mom realize that like there's nothing I was gonna say there's nothing that she could have done differently, which is not true. There are things that and we're gonna go over that. Like, there are ways to like care for your brain, and she's already doing it. Like there are things that you can do to improve your brain health, and she's doing it. But I guess like what I wish I could like comfort her is like, you know, we had an incident that came up today after this lumbar puncture test that she had earlier in the week. She ended up with a like a spinal tap headache and she had to go to the emergency room. And she was just in a bad way, like the front, because again, we don't live in Denver. So we had to, I my my best friend who lives 10 minutes from my mom's house, had to like graciously go over. I mean, she feels like she's family to mom too. So like, go go over, get mom, check on her, take her to the ER. What I found out is like during that time, like my mom was beating herself up. This, I did this to myself. This is, I should have been eating differently. Like she was in a full like self-pity, just like blaming herself and almost thinking that she should have been sitting there suffering with this headache because she did this to herself. And like, I wish that like I could take that away from her and just like I wish I could fill her with like just like acceptance for what it is, you know, like that nobody chooses for this to happen. Yeah. Can you do things that can improve or potentially delay the onset of it or change the level of decline? Yes, like there are pieces of that, but also it is a like you just said, it is a disease. You don't choose to get a disease. Sometimes you get it and it's your life and it's unfortunate. And like you don't, she doesn't need to spend any more of her life like beating herself up for having got Alzheimer's disease.

SPEAKER_02 30:22

Yeah. Well, especially like, I mean, I I really think when it starts that young, like for the protein to start building up, that may like, yes, as we've talked about and we'll talk about later episodes, like it was a lot of her lifestyles that led up to the building of that of that protein. But at the same time, like, I do think that Alzheimer's sometimes is just luck of the draw. You might be more predisposed, like, even if you don't have the genetics for it, like you might be more predisposed to having that protein build up. And especially like people like mom's age and stuff or older, there was no talk about Alzheimer's and what you can do or anything. Like, she can't go back in time. It's not like it is now where we have the knowledge now, we have the internet, we have the resources, we have the support groups to know these things and choosing not to and taking that risk.

SPEAKER_00 31:11

Yeah, it's well said. And I actually I think you're bringing up a really good point that I feel like we're at this really this inflection point that we've kind of been circling around during this episode, which is that people are not getting properly diagnosed. They're just not. And it's for a lot of reasons. There's not enough neurologists out there, there's not enough at like facilities. Um, and for how many generations, like this is just what you did. You got old, you got dementia. That was the end of the conversation. There's no imaging, there's no neuropsycholuation. And a lot of times, like there's no path to figuring out what do you even ask for? What do you even advocate for? Because it just takes one doctor having a busy day that just says, you know, I really think this is uh dementia, what was it called? Pseudo pseudo dementia. And you just accept that as a decision. And because guess what? It is exhausting to make a doctor's appointment, to go back, to have the same conversation where you're advocating for yourself and you're saying, I really feel like something's not right. And how many times can a person really go through that before they just think, well, I'm not gonna keep wasting my money on a my copay, going to see a specialist. Like, and and it's there's a lot of burdens that come with this path to get diagnosed. So I guess that's just to say, like, I think that's an another big part of it, where like people are just accepting dementia for what it is without pursuing any other options because they don't know how it's extremely stressful and it's kind of been the status quo. And so families are left making decisions without really understanding what they're dealing with.

SPEAKER_02 32:51

Yeah, I think that's true. And you know, that's a good point. Like, and obviously we're we're trying to be here as a resource for people, but I think one of the things that like I was even talking to you, I think about on the phone earlier today, is like maybe I need to get a consultation set up with the Alzheimer's Association, like they're a free 24 hour seven support. You know, I talk about at the end of every episode their phone number because like they could have like in-person consultations. Like if you don't know where to start, you can call them. Like, it's just such an amazing resource. And I didn't realize, like, everyone always hears the Alzheimer's Association and just thinks it's another nonprofit that's out there. But like they're the reason I truly believe like their fundraising and their advocacy for Alzheimer's is the reason that we're getting the IV infusions, that we're getting the the oral pills, that we're getting the research that we're a P Tow test.

SPEAKER_00 33:43

Exactly. Which is a much lower. I mean, again, we're gonna talk about it, but like that is that is really important because it's a much lower friction test to be diagnosed than having to go get a PET scan, having to get a lumbar puncture. Like those are very invasive and they have contraindications. So anyway, keep going.

SPEAKER_02 34:01

Yeah, I agree. But like all that to say is like this is an amazing organization that I really support. And with that, like I'm in Buffalo, New York, and this year I'm going to be participating in the walk to end Alzheimer's. It's one of their fundraisers that they do. And it's, I'm sure it's, I think it's in every almost every city. I'm sure you've heard of it. So if there's one near you, you can definitely join. I actually started a team for for Western New York to go through this one. It's called Conversations Through Alzheimer's. So if you're in the Western New York area or if you want to drive up, like we'd love to have you walk with us. I'm planning to drive over and six-hour drive to get there. Meet me and Felicia or haven't seen us in a while and want to meet us again. Like we'd love to have you in Western New York and get a team together to support.

SPEAKER_00 34:48

There's a there's a chance that mom might be able to join us. I mean, obviously that's super far out, so we we can't commit to that. But once to when I talk to her, yeah. And it does matter, you know, like you said, like these fundraisers, the awareness, spreading the information. And like you said, just it's really easy to think you're alone and they're like the true living proof that like you actually have resources that can give you that next step on your journey and keep helping you along the way. Like you said, even if you're just with your person you love that has Alzheimer's and like they're completely losing it and you're at your wit's end, like you can call and get immediate strategies on how to how to help.

SPEAKER_02 35:30

Yeah, so they're a great organization. I want to do anything I can to fundraise for them. But my goal for this fundraiser is $2,500. So if you're not in Western New York or you don't want to walk the two mile lap, like I'm gonna put the link in the show notes here. If you want to donate a dollar or two, no pressure. I know things I know are tight, but like all that to say is like I truly believe in this organization and the work they're doing for Alzheimer's. And you never know who in your life might get Alzheimer's one day, or it might be you. And I want that research being done now to where if I do get it in 30 years, there's going to be more support, more, more medical advancements. There's gonna be more medical advancements out there to to help us with that. So putting in the money and the time now, so later when ex any of us listening is potentially dealing with that. Yeah, exactly.

SPEAKER_00 36:24

Well, I hope that this has been helpful. I mean, hopefully there's like some takeaways here, just like knowing precisely what you're dealing with. It gives you a lot better chance to be knowledgeable and make decisions. Like, because that's what this really comes down to. If you, if you did find out that you are, you know, you're presenting with dementia symptoms or somebody you love and they don't want to do anything, that's also a choice. Like you have you have the freedom to choose however you want to live your life and pursue your life. But if you would have pursued other things because, but that you just didn't know they were out there, like that's the the reason that I think it's so important to have like information to help you make the decisions that you feel like you can make. And so don't ever stop fighting to learn more. You can you can take it step by step, but but don't delay it too long and um keep keep striving to learn more. We'll talk to you next week.

SPEAKER_02 37:16

Bye-bye. If this episode resonated with you, or if someone you love is navigating an Alzheimer's diagnosis, please know you don't have to fight it alone. The Alzheimer's Association is a free 24-7 resource available to anyone who needs their support. Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next. You can reach them anytime at 1-800-272-3900. You can also reach them online at ALZ.