Patty's Place
A place to talk about grief, dementia and caregiving. A place to find comfort when you are going through a difficult time.
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Patty's Place
When Dementia Arrives Too Soon: Understanding Early Onset Alzheimer's
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The moment when you realize your parent is getting lost in familiar places marks the beginning of a different kind of grief. For those with loved ones experiencing early onset Alzheimer's – dementia that begins before age 65 – this journey starts much sooner than expected.
Drawing from my personal experience with my mother, who began showing symptoms in her mid-60s but wasn't diagnosed until much later, I explore the unique challenges of early onset Alzheimer's. Unlike the typical cases affecting those in their late 70s or 80s, this form strikes approximately 200,000 Americans earlier in life, accounting for about 3% of all Alzheimer's cases. The disease progresses more aggressively in younger patients, yet presents with symptoms that are often missed or misattributed to stress, depression, or normal aging.
Through my mother's story, I share the subtle warning signs we missed – her sudden refusal to drive, blaming it on disliking a new car; her reluctance to shop independently; her inability to follow simple television plots. These weren't just normal forgetfulness but manifestations of a brain changing far too soon. Early onset patients often experience unusual symptoms beyond memory loss, including difficulties processing visual information, recognizing faces (even of spouses and children), and significant declines in language, writing, and executive functioning skills. Perhaps most heartbreaking is that these patients typically maintain good physical health while experiencing profound cognitive decline – my mother remained mobile without assistance despite advanced dementia, surprising even her hospice nurses.
If you're caring for someone with dementia or noticing concerning changes in a loved one, please reach out through comments or my upcoming Instagram page. Share your experiences, suggest topics you'd like covered, or simply connect with others walking this difficult path. Together, we can navigate the complex journey of caregiving, memory loss, and the grief that comes when someone we love begins to forget.
Yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah, a place where we're going to talk about dementia, caregiving and grief. I dedicate this podcast to my mom, who passed away about almost two years ago now. It's hard to believe from dementia, and so I wanted to talk about today. So you know, get your cup of tea, cup of coffee, or, if you're having a really rough day, get a glass of wine, and I thought today we would talk about early onset Alzheimer's, because not a lot of people know about it and that's basically what my mom had. So there is a small portion of Alzheimer's patients that are younger than 65 when the first signs of dementia appear, because most of the time when you think of Alzheimer's and dementia, you think of people who are older, like in their late 70s and 80s, but it's not always the case. So a lot of times, people can get it early.
Speaker 1:Scientists are working to understand why Alzheimer's can strike patients earlier than most. With it there is about I mean, the greatest factor is going to be age for Alzheimer's, but there is about 3% of the Alzheimer's patients are roughly about 200,000 American adults that the disease appears before age 65. And that was basically my mom. My mom died 10 days short of her 76th birthday, so she was 75. And I know she had symptoms for at least 7 to 10 years, so she was in her mid-60s when she started to develop some of these signs. So what the experts call this is younger or early-onset Alzheimer's and the disease is the same regardless of when it strikes. And the underlining triggers and symptoms can differ from patient to patient when they experience early onset Alzheimer's compared with later onset varieties. So the differences may sometimes the scientists think maybe that will hold some secrets or that we're not sure.
Speaker 1:So any diagnosis that comes before the age 65 is termed early. Not all the cases are the same. An early onset variety of the disease can be broken into about two categories that a professor at Washington University talks about. The first category, they said, represents an overwhelming 97% of early onset cases, or known as sporadic Alzheimer's. It's named because it shows up randomly within the population, likely because of genetics, lifestyle or environmental factors. And really, apart from the fact that the patients might start showing symptoms in their 50s or 60s, the symptoms and the underlying brain changes they lead to, they're more or less the same as when they strike older adults. So now some research say that it could be linked to head trauma or vascular disease, to the development of the Alzheimer's at a younger than normal age. But there's really no established reason why some people get sporadic Alzheimer's before 65. Now there is a rarer category of people that get it early and that's referred to as genetic or familiar and that can show up during a person in their 40s or 50s or even earlier. So that's not the one we're talking about today.
Speaker 1:Today we're talking about early onset, which is anything before, like right around 65-ish or before that. Because, like I said, most of the time when you think of Alzheimer's and dementia, you think of people who are older, like late 70s and beyond. That's what you think of. So that's why a lot of times you think, oh, that's just old age, that's not a big deal, so I forgot that. So what? This is different.
Speaker 1:So a lot of times with the early onset, obviously forgetfulness and short-term memory is the first or one of the most common symptoms with it. I mean, everybody forgets about, everybody worries. I should say right, Because we all forget at times and then we think, oh God, you know I forgot. You know, we all forget where we put our keys, we forget why we walked into a room sometimes, or we forgot the list to go to the store. Or, you know, you come back from the store and you're like, oh, I forgot that one item that I really needed. That's not what we're talking about with forgetfulness. We're talking about that you forget somebody's birthday or a graduation, or you go to the store and you park your car and you can't find the car, or you get lost going to a place that you normally go to. Those are the types of things that we're referring to when they talk about memory lapses and forgetfulness. Or you get disorientated easily with that.
Speaker 1:Another first stage symptom, as they call it, of both early and late onset alzheimer's includes problems with judgment, decision making, multitasking. There might be changes in mood of personality. There could be apathy, depression, irritability or agitation and anxiety. They're all common with that. I mean, think about it. How could it not change a person? Because they start to worry and anxiety. Think about if, all of a sudden, you went to a store that you always go to and now you don't know how you got there or you don't know where the car is, or you don't know how to get home. You feel lost for those few minutes. Think about how you would feel with that. So how could your personality not change? And so maybe you stopped going to a lot of places, which is kind of what my mom did.
Speaker 1:She just my mom was never a big driver. She would never drive on the expressways or anything like that, but she would drive to the library, to the stores that were close by to work, but she would drive to the library, to the stores that were close by to work. And I remember, and thinking back now, I realized that this was probably a big sign, but I didn't realize it at the time. So my dad had bought a new car and she went with him to get the car. And after he bought the car, she said that she hated that car, it was too big and she was never going to drive that car again. And she just stopped driving. And thinking back now, I think I wonder if she got lost or got disorientated when she was driving and she just stopped driving. That was her answer. I mean, like I said, she never drove a lot anyway, but she just blamed it on my dad and blamed it on the car. That's why she couldn't drive anymore, because she hated the car. It was too big.
Speaker 1:And I could see my mom doing that, like if she got disorientated or she got lost because she was always directionally challenged and so it wouldn't. We always would laugh that she would get lost. But I think it was more than that. I also remember I had surgery and I was up in the room and my mom had been with me the whole time and I said Mom, why don't you go to the cafeteria and why don't you go get a Coke? Because she always loved her pop. And I said, it'll be OK, I'll be here, I'm just going to rest, go on, go get a Coke. And she walked out and she came back a few minutes later without the pop and I realized I bet she got lost or got disorientated and she came back. Also, her and I used to always go shopping and you know it would always be like we'd be in the store and I'd go to my section. She'd go to her section and I remember one of the last times we went shopping together she just stayed right by me. She didn't want to go look, and I realized now it was because she needed I was the anchor. She needed to know where I was in case she felt lost or disorientated with it.
Speaker 1:I mean, obviously there's other symptoms too. Some aren't as common and some are more particular to early onset, like some of the younger patients, for example, might develop a language variant which makes it difficult for them to express their thoughts and words. A lot of times, people affected by the struggle come up with common words, especially the names of everyday objects. You know, I mean, we all have that sometimes, where we can't come up with the word or we make up a word for something else with it. I remember too, my mom. I don't know where she had gotten this cookie. It was one of those really pretty decorated cookies, but she had it sitting out like it was a knickknack and when I said to her, oh, where'd you get this cookie from? She was like that's not a cookie. I don't know what she thought it was, but it wasn't that.
Speaker 1:So a lot of times too, there might not be a loss of recognition right away, but, like an example is, say, the patient looks at a sandwich and he or she might know what it is and that they're supposed to eat it, but they might not be able to get the word for it they don't know what to call it for. That A lot of times, too, with early onset patients. They also experience difficulty in processing visual information, so they only see what's centered in their visual field and they lose awareness of the rest. So this could be like that could lead to tripping, difficulty finding items even when they're in plain sight, or problems with driving with it. Others might lose the ability to recognize faces, including those of their spouse and their kids with it.
Speaker 1:They did a 2016 study out of the University of Montreal about with early onset patients in the initial stages of the disease, and they also experienced more severe decline in writing, math skills and executive functioning. It's a category of high-level cognitive processes that include planning and coordination. When they did the brain scans of patients with early onset Alzheimer's, they revealed the differences. So they saw protein plaques and tingles, as well as reduced brain volume, are characteristics of Alzheimer's, but in early onset patients, all these signs may show up in unusual areas of the brain, including some that are not related to memory, which makes sense when you really start to think about those things. My mom, before she was in memory care, she went to go get a CT scan of her brain and she had a hard time signing her name. She was so nervous she couldn't even read the the paperwork and I had to read it for her and show her where to sign her name. But she really didn't know how to do it anymore. And what they have found with this early onset is that the disease is much more aggressive.
Speaker 1:It's difficult to put specific timelines for the form of the disease because obviously with dementia and Alzheimer's it varies from patient to patient. But the progression of symptoms is usually much faster compared to the late-onset Alzheimer's. Now, not all aspects of the disease are more severe. In the early-onset variety, cognitive symptoms worsen more quickly. Younger Alzheimer's patients tend to be otherwise healthy, free from heart disease, vascular disease and other ailments that are often present in patients who develop Alzheimer's late in life. Now the Alzheimer's will eventually lead to death, usually due to infections, to an overall weakening of the body. But these patients may live for several years in good physical health but with very severe dementia.
Speaker 1:And that was my mom. I remember towards the end the hospice nurse was. So she told me over and over again how highly unusual my mom was because she was still mobile, she could walk, she didn't need a walker or anything like that given the state of her dementia, and that's because hers was early onset. I believe with that Because, like I said, my mom whenever I got diagnosed she refused to get diagnosed until it was too late and she didn't know who me and my dad were. And then we had to take her to the emergency room. And a lot of times with this is think about it.
Speaker 1:Most primary care physicians are trained in the common signs and symptoms of Alzheimer's but they're used to it in their older patients. They're not used to it to see the diagnosis, the disease in men and women in their 40s, 50s and 60s. So it's harder to get that diagnosis with it because you're not thinking about it, that that's what it could be, because you're not thinking about it, that that's what it could be For a lot of times. Their symptoms are sometimes unusual or atypical, so the doctor doesn't really know what to look for. It often takes the younger patients years after the onset of their symptoms to get an accurate diagnosis and many are initially told they have depression or some other neurological condition. And that was kind of well.
Speaker 1:Like I said, my mom refused to go to the doctor. I tried, I tried to get her to go to get diagnosed and she wouldn't. I took her to our primary care doctor and you know he tried to give her like just the 10-question memory test and she refused to answer it. She absolutely refused to answer it. And I tried to take her to a neurologist and she hung up. She hung up on when they tried to confirm the appointment she was not going. So for the early onset patients, they typically have more traditional Alzheimer's symptoms like short-term memory struggles. A lot of times they're diagnosed and they can come much more quickly with it. Most of the time the diagnosis is made by a neurologist based on a person's symptoms and family history. But those are only still part of the diagnostic mix.
Speaker 1:There's other things you can look at too. They do have some tests that are now available to identify the presence of plaque and tangles in the brain of living people. They usually use PET scans or spinal fluids analysis. There's also genetic testing that can reveal the mutation linked to the rare, familiar form of early onset Alzheimer's. I mean, you know, like I could take a blood test if I wanted to as well. But then part of me is just like, do I really want to know? I don't know. It's one of those weird things. It's like do you want to take that blood test and find out that you might have it, or do you just want to, like, see what happens? I don't know. It's one of those.
Speaker 1:Unfortunately, the outcome is the same whether it's early onset or it's later onset. There's just there's no cure for Alzheimer's. So the life expectancy doesn't vary much for the younger patients compared to with people who are in their 70s or 80s. The average life expectancy for an Alzheimer's patient is roughly 7 to 12 years after a diagnosis, but again, this can vary greatly depending on your diagnosis and the person. That's the thing about dementia and Alzheimer's Every single person is a little different. There's no set course of it. There's no predictability. Yes, there are things that are similar and symptoms and things that happen when their brain shuts down, but it's all different for every person. So that's why doctors have such a hard time being able to tell you what the progression is and that's why it's so hard as a caregiver, because you just don't know every day is different and you don't know what will happen with it and there's just nothing a doctor can really do to cure or slow down the disease.
Speaker 1:There are some medications that they can prescribe that are supposed to slow the progression, but at a certain point you know, if you don't get those diagnosed early enough, I don't know how well they work for it. I mean, obviously it can't hurt the person but again, you have to get it diagnosed for it to probably really make that difference for it. And sometimes the medications can reduce the symptoms and they can improve attention and offsetting some of the early memory difficulty. They found that the drugs often work more effectively in the younger patients than in the older patients. They found Now there are the drug companies are always working on studies and to find there are some studies that are they're working on for the early onset Alzheimer's to better understand the symptoms and risk factors to provide care. But it's hard for patients and caregivers struggling with the early onset Alzheimer's. So there are different studies that people can do. You can look those up as well. Alzheimer's. So there are different studies that people can do. You can look those up as well. There is two large studies that are ongoing on the longitudinal or longitudinal or leads early onset AD study and the dominantly inherited Alzheimer network or DIAN study, if that's something that you're interested in. You know the more they study it, the more they can find information. Hopefully at one point there'll be some drugs or there'll be some diagnosis, but unfortunately early onset is the same as the later onset, it's just that it progresses more aggressively in the younger person.
Speaker 1:And, like I said, that's basically what happened with my mom. She, I know she's, I know she had it at least seven to 10 years before she actually, before she actually got diagnosed. And when I look back, like I said, she couldn't even follow TV anymore, not even Hallmark, when those are easy to follow. She and she was always one person who could, always she could solve the mystery while we were watching it or she stopped reading and those types of things. So what you need to look at with people, you know, like I said, forgetting things is normal, but it's when they forget birthdays or graduations or important dates or they forget to pay bills and they were always on time with stuff, they forget important things. Their personality changes.
Speaker 1:Like with my mom. She always made such a big deal about birthdays and there were just little things that I could tell she didn't remember or she was different. She always kind of leaned a little bit towards a little depressiveness or depression, but it seemed like it was more. She didn't want to go out as much for that she, she wanted to stay in more and more, even though that was closer to her personality. She wasn't a big group person but she wanted to stay home because I feel like I think it's because she felt safe there. She felt safe that that's where her comfort was and she knew she was safe in the house and she knew where things were and she was familiar with those types of things. So those are things you want to look at.
Speaker 1:With symptoms, especially with the early onset Alzheimer's with it, and, like I said, maybe at some point they will find medicines or a cure for this awful, awful disease, because it's a very hard disease on the caretakers as well too. It's not something that's easy to take care of, it just isn't. It isn't like taking care of cancer and things like that. So well, hopefully I've given you some good information today as we continue, please reach out to me. I love if you'd reach out and talk to me. Drop me a comment on my page for that. I'm hoping to get an Instagram account coming up for this as well, so you can kind of talk with me and let me know what topics you'd like me to cover or someone to interview, or just what you like, what you didn't like, what we can do for it, and so I hope you enjoyed your cup of tea, your cup of coffee or your glass of wine, if you needed to, and join me next time right here on Patty's Place.