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How to Know Whether Only Memory Loss Is The First Sign Of  Dementia

Have you ever wondered if memory loss is the only sign of dementia?

In this episode of "Dementia Caregiving for Families," we dive into this myth.

Many believe memory loss is the first and primary sign of dementia. But is it? Let's explore some lesser-known signs and types of dementia that go beyond just memory loss.

Unrecognized Early Signs of Dementia

1. Personality Changes

One of the earliest and most overlooked signs is a change in personality. Family caregivers often notice a loved one becoming more irritable or showing unusual behaviors long before memory issues arise. For example, a once sociable person may become withdrawn or display sudden mood swings.

2. Struggles with Communication

Difficulty in finding the right words or following conversations can be an early sign. This isn't just about occasional forgetfulness but consistent trouble in everyday communication. It's important to pay attention to these subtle changes.

3. Time Awareness Issues

Losing track of time or being late for appointments is another early indicator. People with dementia might struggle with tasks they once performed with ease, like knowing how long it takes to get ready in the morning.

4. Filing in Piles

A sudden change in organizational habits can be telling. Someone who was always neat and orderly might start leaving piles of mail and paperwork around the house. This disorganization can signal cognitive changes.

5. Lack of Initiative

A noticeable decrease in initiating activities or hobbies can also point to dementia. If a person who loved gardening or reading suddenly shows no interest, it might be more than just a phase.

Types of Dementia Without Memory Loss

1. Frontotemporal Dementia

This type affects the front and sides of the brain. It often starts with changes in personality and behavior rather than memory loss. People might become more impulsive or socially inappropriate.

2. Lewy Body Dementia

With this dementia, cognitive issues such as hallucinations and fluctuating attention span appear before memory problems. It includes symptoms similar to Parkinson’s disease, like motor issues and stiffness.

3. Vascular Dementia

This results from strokes or other issues that affect blood flow to the brain. It can cause changes in judgment, planning, and organizational skills before memory loss becomes evident.

Conclusion

Recognizing these lesser-known signs can help in early detection and better management of dementia. Being informed and attentive to subtle changes in behavior, communication, and daily activities is crucial for caregivers.

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a black silhouette of a person's head with torn pieces of paper | How to Know Whether Only Memory Loss Is The First Sign Of Dementia

Exploring Myths in Dementia

[0:01] Have you ever wondered if there are any myths in dementia? And so for fun, I decided to add this segment. It's called a Myth Buster episode. And today we're going to look at whether memory loss is always the first sign of dementia. And we're going to bust the myth that it is because it isn't. So tune into episode 130, how to know whether only memory loss is the first sign of dementia.

[0:33] Have you recently found out someone you love has dementia? Struggling to wrap your head around how to be a Christian caregiver? Searching for answers by joining finding countless Facebook groups but find them toxic, learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy. Hey, brother and sister in Christ, I'm Lizette, occupational therapist, pastor's wife, turned dementia coach, and a daughter of dementia. In this podcast, you will learn the truth that the way to make dementia care easy is your faith. Knowing that a loving God has decreed this hard providence in your life makes all the difference. Here you will gain skills. You will be challenged by what God says in his word about caregiving, and you will learn exactly what dementia is and is not. Find clarity and certainty from God's word so you have perseverance for this journey. Use science-backed solutions, and biblical principles to redeem your time. Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia.

Christian Caregiving Worldview

[2:00] Welcome to Dementia Caregiving for Families, a podcast for Bible-believing Christians who wonder how to make dementia caregiving easier. We use your God-given talents to give you hope as well as help so you can create moments of joy and ease your burden during this season of caregiving. I thought it would be fun to do a myth-busting episode. Today we're going to talk about how to know whether or not memory loss is always the first sign of dementia.

[2:40] And I know so many people believe that memory loss is usually always the first sign of dementia, but sometimes for certain types of dementia, this is not true.

[2:57] And another myth that we need to dispel is that dementia is only found in older adults. Now, statistics tell us that one out of three adults over the age of 65 do have some form of cognitive loss. But what we don't talk about frequently is that dementia can hit anybody at any age, depending on the type of dementia.

[3:28] Now, this episode isn't about this specific topic, but did you know that children also have dementia? There are specific types of dementia that are inherent in children. So it's not just a condition or something that happens to older people. It can It can happen to you in your prime. It can happen to people in their 30s and 40s. And it has a significant impact on families, on communities, and ultimately it impacts the entire world, doesn't it? Because if dementia impacts younger adults who are in their prime, then obviously that's going to have a significant impact on the people who are taking care of them, as well as the community around them, as well as,

Unrecognized Signs of Dementia

[4:25] you know, the greater good of the world. So memory loss is not always ways the first sign of dementia.

[4:35] So today we're going to look at it in three, maybe four different points. We are going to look at being beyond memory loss and recognizing the unrecognizable or less recognizable signs of dementia. We're going to talk about difficulties with everyday day activities. We're going to talk about changes in communication. And then we're going to talk about three types of dementia that don't typically start with memory loss. So how about we dive into today's episode? So beyond memory loss, recognizing the less recognized signs of dementia. Oftentimes, Sometimes one of the first, when we track back over the years of a person's dementia journey, sometimes when you speak to family caregivers, the thing that they will tell you that they recognized first in the person living with dementia is a change in their personality.

[5:47] Or a change in their moods. So let me tell you a story about my mom. My mom and dad were diplomats for the South African government, which if you think about what a diplomat is and does, means that they are, even though my dad's position wasn't an ambassador, they are an ambassador for the true sense of the word ambassador. They're an emissary for another person to another place space or time or, you know, a messenger. So they lived in the diplomatic community, which meant that they had some pretty interesting and awesome experiences in their lives. When they were living in Sweden, my parents were invited to attend the Nobel Peace Prize. And I have a beautiful photo of my mom and dad. This was before her stroke, related to going to the Nobel Peace Prize. So my parents were very much in that echelon of social fear, for lack of a better word.

lizette's parents

[6:55] And as I started to track back to my mom's changes many years ago, one of the first signs that she had that something was changing, I totally missed. And so I want to encourage you that if I had at that time 20 to 25 years of experience in working with people living with dementia and I missed it, it is very easy for you as a family caregiver to not necessarily have recognized some of the early changes that might have occurred. So the first sign that I can track back now, because I know better, that my mom was having difficulty with her thinking processes, that something was changing, was a change in her personality.

[7:52] So this was the situation. My husband and I are believers, and we attend church. But at that time, we were attending an Orthodox Presbyterian church here in Greenville, South Carolina. When my parents would intermittently come with us to church, I do believe my mom is a smoldering WIC, but that's a whole other conversation. And I do not remember exactly whether it was going to church or whether because my husband was graduating from seminary or whether it was because we were moving away yet again to another place for another part and season of our life. But when my mom was coming and meeting people and people from church would stick their hand out to shake her hand, she took her arms and folded them around her body and said, I don't touch people. And I remember very vividly remembering this thought going through my mind. That's strange. Mom's never done that before. But I didn't put it together until many, many years later as some of the other signs of her dementia starts to unveil themselves. So my mom's very, very first sign that something was changing in her brain was a change in her personality.

[9:20] And that is oftentimes a very unrecognized first sign of a change in a person's cognitive abilities, difficulties, that and mood swings. Another early sign can be struggling to find the right words for the item that they are wanting to say. I always joke with my husband and with my children, nobody is ever going to know I have dementia when it finally catches up with me, because for decades, ever since my kids have been little, I really struggle to sometimes find the word for the item that I am trying to express. Now, I really don't think I have dementia, but I'll just use this as a concrete example. I would frequently.

[10:13] Tell them something like, go put that in the dishwasher when I actually meant put it in the washing machine. It's like my thoughts are so fast in my head that sometimes the words just don't follow all the way. But that's the kind of thing that you might find somebody doing is having difficulty finding the right words. Now, the way this presented with my dad when my dad was is starting to have and is having trouble right now, the thing that I notice with him is that he uses descriptions to come up with the concept because he cannot find the word. So he'll give a roundabout long sentence to say the same thing instead of using the correct word. So finding the right words can sometimes be an early and unrecognized sign of dementia. Sometimes another early or unrecognized sign of dementia or something starting to happen with a person is a change in their awareness of time.

[11:19] So for example, this will start to present itself in the inability to be on time for appointments, you know, showing up late to an appointment that they never would have been late for before. It's like the person's awareness of how long a task actually takes to perform goes away. For example, most of us have a very, very good intuitive sense sense of time. And we know that when we are getting ready to go to work or to go to church, about how long it will take us to do our normal skills of everyday living, right? How long it takes you to get up, get dressed, take your shower, eat your breakfast, all of those kinds of activities. Well, as a person's brain changes, sometimes that awareness of how long things take and an awareness of what time it is or that how much time has passed can be distorted or go away. Another early sign of a person having changes in their brain that could be an earlier sign of dementia than not necessarily having difficulty remembering things or making memories or short memory loss is the concept of filing in piles, right? So what I mean by that is a person.

[12:48] Who has always been paying their bills on time or has lived in a very systematic and clean and neat house, which is not mine, but a person who is pretty on top of keeping things organized. And I'm not talking about the person who's always been disorganized, but I'm talking about a person who has always been organized. And all of a sudden you come to their house and you notice there are lots of piles of mail, there are lots of piles of pieces of paper, like they've been sorted out and moved around, and the inability to actually complete that activity and task and then move on to the next one. And so I call it filing in piles. You'll just notice lots of piles of things around the house that could be a sign, an early sign that's unrecognized of dementia.

[13:44] Another early sign of dementia could be a change in ability to actually initiate doing activities by themselves and for themselves. So all of a sudden, this person looks like they have lost interest in life. All of a sudden, all they're doing is sitting watching TV. They're not even reading a book. They're not even maybe getting up and doing the activities they always have done, but it's not like they're depressed. They're just apathetic. They just don't look like they have any interest in life. And that can be a very early sign of dementia for a lot of people. So that's the thing, the first part.

Beyond Memory Loss

[14:27] Early signs of dementia can go beyond just a memory loss. So being able to recognize some of those earlier signs can be helpful to you to be able to start to think things through, to get the person help, to start to prepare yourself by just becoming more educated related to dementia and dementia caregiving, and to try to see if you can get an earlier diagnosis. The second part of where we miss things sometimes related to dementia and a diagnosis of dementia is that people may start to have difficulty with their everyday activities. So this kind of ties in with the first one where we talked about changes in planning and organization, the inability to follow through and do the activities that they've always done, challenges with paying their bills, all of a sudden forgetting to order their medication.

[15:32] Or maybe not making good decisions. And oftentimes, and unfortunately, I see this a lot, lot. Sometimes this comes out in being scammed, like that can be a very early sign that something is starting to happen because the person is starting to lose the ability to judge things that they normally would have recognized as not being a wise or a safe decision. So judgment, inability to make these good and wise decisions. Sometimes an early sign can be difficulty getting lost or finding their way around.

[16:16] We're getting turned around in the community. Most of us have the ability to find our way around, specifically if we have lived in a particular part of the country or the same place for an extended period of time. But when an unrecognized first sign can be that the person.

[16:37] Is all of a sudden starting to not be able to find their way around. It could be inefficiency in a store or not being able to locate a public restroom in the movie theater or in the grocery store or in Walmart, not being able to be organized in grocery shopping, right? Most of us will take a list when we go grocery shopping, but then this person might all of a sudden start to demonstrate a haphazard way of doing their grocery shopping, not doing it systematically the way they've always done it, or not being able to find things in the grocery store because of some changes in their brain. So difficulty with everyday normal activities that they've always been able to do. Now, these difficulties may not have impacted them to the point where somebody else has to do them, but they are actually impacting. They're an early unrecognized sign that something is going on. The third myth buster related to memory loss not only being the only first sign of dementia is changing in the ability to communicate. Communicate, and oftentimes we will see this in struggling to find words.

[18:05] Struggling to come up with the right words, calling things the wrong thing, like I do all the time. So maybe this is my early sign of dementia. I don't think it is, but I will keep an eye on myself, and I will have you guys keep an eye on me.

[18:22] But true difficulty word finding, calling things the wrong word and not find or getting, struggling to get the word out, like it's on the tip of their tongue, but they just can't get that word out. Another early sign with changes in communication is all of a sudden really struggling to follow conversations.

[18:45] So what does that look like? I'll use my dad as an example. My sister lives out of state. She lives in New Hampshire and they will call my dad every now and then. But because my dad is having difficulty with following conversations and he is so focused on getting the food on the table or the next activity or task that he has to do because he's afraid he's going to forget what he needs to do next, she'll be in the middle of telling him something, giving him a long conversation about what's going on in her life. And he will just not be following an interrupter. Or, you know, with my mom, the same thing for many, many years, my mom would have difficulty, you know, following the back and forth of a conversation. I just, we just recently had a little South African tea when my sister was here from out of state. We had a whole bunch of woman at my mom and dad's house because my mom's essentially homebound because it's very difficult for her to get out of the house. I saw my mom was really struggling to follow the conversations around her, what people were saying, how they were dialoguing with one another. She had a tough time keeping up with those conversations. Another early sign of changes in communication is interrupting people.

[20:06] So my mom did this for many, many years. And I know I use my parents as examples all the time, but it's because, you know, I see them all the time. And these are just super easy and fun examples for me to be able to use. But when my mom started, after her personality change and after I started to recognize that she truly is having a hard time with her memory, that she would cross her fingers. She would cross her fingers when she needed to remember something.

[20:36] And so when she started to do that, I knew that she couldn't keep it in her mind because I didn't used to do this. I would finish my thought or my sentence. And when we'd get back to her, she's like, I don't remember what I was going to say. So now I actually allow her to interrupt me because I understand that thoughts in her her head right then and there, and I can retain my thought and know what I'm going to say, and I can come back to what I was going to say. And even if I cannot, it's not the end of the world. But allowing my mom to interrupt me, because I know that that's when she can actually remember what she wants to tell me. So when my mom crosses her fingers now, I say, yes, mom, what do you need? And I'll allow her to interrupt me. Another change in communication, and this is something that we may not see unless we're living with somebody or, you know, in close proximity to somebody, is following storylines on the television.

[21:38] Do you feel alone and isolated and need a little bit more help and support in this journey? Sign up for our next Ask the Dementor monthly meetup where we will come together. Less than 10 people are allowed to sign up at a time so we can have fellowship where where we can answer questions, where you can get some Christian guidance and just an awareness that you are not alone on this journey. I really want you to be able to connect with me. I want to be able to answer your specific questions. So if you're struggling, if you're tired, if you're overwhelmed, if you're stressed, if you just need a little bit of help, sign up for the next Ask the Dementor Monthly Meetup. The link is in the show notes below.

[22:37] Most of us can follow a storyline, a plot. We can keep the story in our mind from week in, week out, episode in, episode out. But when people start to have difficulty communicating, think about it, a storyline is almost like a dialogue between you and the television, but you're watching other people's conversations. So you're following conversations, and you're needing to keep track of a story. So when a person is starting to have difficulty in communicating, sometimes what you'll notice is they're also having difficulty following the storylines on a television program. So what three types, and I just picked three, they're more than them,

Dementia Types without Memory Loss

[23:18] but I really am trying to keep the episode short. What three types of dementia do not actually start with memory loss. So let's talk about that for a couple of minutes. So the first type of dementia that, oftentimes, very frequently starts without memory loss is frontotemporal dementia.

[23:41] So frontotemporal dementia, it literally means it's the front and the side of your brain that do not work as well. So what do you see in the front part of your brain is where a lot of your executive functions lie in where your personality is. And so oftentimes we'll see this, most people have seen somebody who's been in a car accident, who has a head injury where they get bumped on the front of their head, right? And sometimes those people after their injury, their personalities are different. They're not the same as what they were before. And that is very, very common. That happens a lot in head injuries. It's because they get bumped from the front. Now, frontotemporal dementia is like being bumped from the front. So the damage in their brain is in the front and on the sides of their brain. And the first signs of frontotemporal dementia, and there are multiple subtypes, and we're not going to go into subtypes today, but we can do that in another episode. If you let me know that you're interested in these kinds of little bit more nitty-gritty detail education type of episodes. I'm certainly happy to be able to do that with you. But one of the first signs of a person with frontotemporal dementia is personality and behavior changes.

[25:07] So think about that. Your personality and your executive function live in the front part of your head. So when the front part of your head is starting to not work as well.

[25:19] Those types of changes are frequently what you see, those behavior and personality changes. And with frontotemporal dementia.

[25:31] Several, two of the subtypes, there might be more, but I didn't really prepare that section of it, actually have more to do with language. And so sometimes you will see a person really, really, really, really, really struggle with language. So who's a good example of that? Bruce Willis was diagnosed with frontotemporal dementia. But if you remember back, if you think back on his on his journey and what his family have said over the years is about a year and a half or so ago, maybe two years now, they released that he has aphasia.

[26:08] And actually, I remember very distinctly when they said that, I'm like, I wonder if he has primary progressive aphasia, which is a type of dementia. And so language can be sometimes the very, very first sign of dementia. So we're talking about the three types that do not typically start with memory loss. The memory loss comes later, but a lot of, so these three types will start with typically a different thing than just memory loss. The second one is Lewy body dementia.

[26:41] So Lewy body dementia is also an umbrella of a couple of different types of dementia. So you have dementia with Lewy bodies, and then you have Parkinson's disease dementia, but we're not going to get into that too much into the weeds. But the biggest difference between the two is with Parkinson's disease dementia, the person has idiopathic Parkinson's disease first. So we know that they have Parkinson's disease. Their memory loss and problems come later on. And with Lewy body dementia, Lewy body dementia, dementia the cognitive types of symptoms come first things like hallucinations fluctuations in their thinking so they're clear one minute they're confused the next it's like huh what's going on why is it all over the place like a rodeo up and down up and down like one day they're thinking good one day they're not thinking good and their signs and symptoms of the thinking processes part come first and then the memory loss comes later. So that's the second type of dementia that does not start with memory loss. And then the third type, and this was, I kind of mentioned it in the frontotemporal dementia.

[27:58] Actually, I'm going to change that right now because another type that does not always start with memory loss is vascular dementia. A lot of people who have had strokes because of the damage in their brain from their old stroke will have an undiagnosed vascular dementia as they're getting older. And vascular dementia does not always start with memory loss.

[28:22] So something to just clarify and kind of talk about a little bit today is a lot of times when we're seeing people living with dementia, they have more than one type. So they'll have a vascular dementia and an Alzheimer's subtype, or they may have Lewy body dementia and a vascular dementia on top of it. So those are called mixed dementias. Wasn't really going to get into the weeds with that, but I just wanted to mention it because sometimes, you know, when we're looking at a person and how they are presenting, there may be more factors than just one type of dementia over another type of dementia.

[29:00] So today's MythBuster episode, we talked about how to know whether only memory loss is the first sign of dementia or whether memory loss is the first sign of dementia, and it is not. So we looked at it yet again in three quick brief points that we don't always recognize the unrecognizable signs of dementia until later, that we don't necessarily recognize difficulty in daily activities sometimes as a first sign of dementia, and we often do not recognize that the changes in communication can be the first sign of dementia. And three types of dementia that do not always start with memory loss are frontotemporal dementia, lowy body dementia, and today we talked a little bit about vascular dementia.

[29:53] So I'm super excited that you guys are here, and I'm hoping to tailor these episodes more to what it is that you like and would like to hear more about. So if you go to my website at thinkdifferentdementia.com, you'll see a little microphone where you can actually send me a voice clip. You can send me a voice clip and say, hey, I would love more episodes on whatever it is, because I really do want to make these practical for you. So that for sure go ahead and do that and if you haven't yet signed up for my monthly ask the dementia coach or ask the dementor segment the next one is coming up on june the 20th at 6 p.m eastern so.

[30:44] The link to sign up is in the show notes. It's a free opportunity for you to hop on and ask me specific questions about your specific struggles and to get a little bit of coaching for you to be able to benefit from that. So the next episode, the next time we're doing that is June the 20th. So go ahead and sign up for the Ask the Dementor monthly meetup. I would love to have you there and be able to serve you in a more deeper way. And as if I remember, I usually try to say, I pray for you guys every single day. And I want you to know that I'm here for you, that if there's anything I can do to help you to go ahead and let me know. And may the Lord bless you and keep you. And I will see you in the next episode.

[31:36] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you. You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families. It's a positive and proactive space to navigate dementia caregiving together. Get practical tools and find support, but without the verbal vomit. Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis. So join today and see you next time as our flight takes off.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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