FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

Click to play

Debunking the Myth of Dementia

Are you aware of how societies have perceived dementia throughout history? This episode offers a compelling look into the historical context of dementia, providing insights that are seldom discussed on most platforms.

Early Misconceptions and Historical Insights

The term "dementia" isn't new—its roots trace back over centuries, and its history is as rich as it is complex. Contrary to common belief, dementia isn't a modern condition; it has been recognized under various guises throughout history, even before Alzheimer’s disease was defined in the early 20th century.

Understanding this can help caregivers see dementia not just as a medical condition, but as a part of human life that has always existed.

The Role of Stigma in Dementia Care

One of the most significant challenges in dementia care is combating stigma. History shows that misconceptions around dementia have led to unnecessary suffering.

By educating ourselves and others, we can start to break down the barriers of stigma and improve the care and empathy provided to those affected.

The episode stresses the importance of discussing dementia openly, which can empower caregivers and those they care for.

Practical Takeaways for Today's Caregivers

For caregivers feeling overwhelmed, the episode offers practical advice and support. It emphasizes the importance of finding community groups that focus on positive support and education rather than despair and negativity.

By choosing the right support network, caregivers can find not only practical caregiving tips but also emotional support to help them through their journey.

Invitation to Learn and Share

The episode concludes with an invitation for caregivers to learn more about the history of dementia and to share their experiences.

By understanding the broader context and discussing it openly, caregivers can contribute to a more informed and compassionate world.

This episode serves as a reminder that dementia care is not just about managing symptoms but understanding the historical and social context that shapes how we care for loved ones today.

As we learn from the past, we can improve our approaches and attitudes toward dementia, making caregiving a more supportive and manageable experience.

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

a hand holding a magnifying glass over a puzzle piece | 134. Debunking The Myth That Dementia Is A New Disease

Introduction to the History of Dementia

[0:00] I bet most of you think or believe that dementia is a new disease.

[0:10] The name Alzheimer's disease is about 114 years old, and so therefore I believe a lot of people believe that Alzheimer's is a relatively new disease. In today's episode, 134, we are going to debunk that myth and we're going to talk about the history of dementia. And I hope it's fun because it's a little unique and different and I really wanted to show people a little bit more the history of dementia. Now, I also have a big ask if you are really struggling, if you feel like you're suffering related to caregiving or that the person that you are helping is suffering and you need a little bit more one-on-one help. I have a new segment for the podcast that I'd love to start, that I've started, where I want people to come onto the podcast with me and let me help you with your particular struggle. The episodes will be less than 30 minutes long, and we can change your name, we can change your identifying characteristics.

[1:36] We can blur you out, whatever we need to do if you do not want people to know. But at the same time, I want you to really listen to today's episode where we talk about de-stigmatizing dementia, and that means we need to talk about it. So I would love to invite you to be on the next episode of the Ask the Dementia Coach, the flight audit, where I will help you with your own personal journey. So, Shoot me an email, lizette at thinkdifferentdementia.com, and let's chat.

[2:22] 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 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.

Debunking the Myth of Dementia as a New Disease

[3:49] What's up, Christian caregiver? It's Lizette, your dementia coach, and you are listening to Dementia Caregiving for Families. It is the podcast for Bible-believing Christians who wonder how to make their dementia caregiving easier.

[4:06] We are using your God-given talents to give you hope and help so that you can create moments of joy and decrease your burden. And today's episode, I am very excited about. You see me wearing my granny glasses because today I'm going to be actually using a whole bunch of notes because I thought that it would be fun and interesting to debunk the myth that dementia is a new disease. And I am in the process of writing a book about being a family caregiver to people living with dementia. And in my research for the book, I came across a medical research paper called The History of Alzheimer's Disease. And I thought that it would be fun to actually go into the The History of Alzheimer's Disease. So I have my cheat sheets today because today is not fly by the seat of your pants. Today is actually going to require me to use some notes. So let's dive into episode 134.

[5:27] Debunking the myth that dementia is a new disease. How many of you guys think or have thought up until today that dementia is something that is related to society.

[5:47] Changes, what we eat, the environment, all of those kinds of things, and that now all of a sudden we hear more and more and more about dementia, so therefore it must be a newer disease process.

[6:03] Well, I'm going to debunk that myth for you today, and we are going to do a brief overview of the history of dementia and then speak specifically about Alzheimer's disease in a little bit later on in this episode. So this This episode is not outlined like I normally do with three points or four points and tips. This is a basic history lesson in the history of dementia, and I think it's really super interesting. So as an introduction, let's just talk about what we see in society right now related to dementia and Alzheimer's. The first thing is we know that there are more people now being diagnosed with dementia and Alzheimer's, and the direct medical and indirect medical costs of dementia are exponentially increasing year in, year out. And we are also very aware that there is the lack of social awareness results in people with dementia being stigmatized. Would you agree? There is a significant stigma related to Alzheimer's and dementia.

[7:22] And we also know, this is very common knowledge, that Alzheimer's disease is the most common form of dementia. And it was first called Alzheimer's disease in 1910, so 114 years ago, which is why I think there's this common misperception that it is a newer disease because the disease Alzheimer's was classified as a disease in 1910. And for a lot of people, that doesn't feel like it was super long ago. But did you also know that if we can delay the onset, research has shown that if we delay the onset of dementia by two years, it would decrease the prevalence of.

The Impact of Delaying Dementia Onset

[8:16] Dementia by about 20% in society. So if we can delay the onset of a diagnosis of dementia by two years, it decreases the amount of people who will have dementia by 20%. That's a lot, right? And the first way that we can start to work on delaying the onset of dementia by two years is is understanding what dementia is, because then we can start to work on de-stigmatizing dementia. And that's one of my biggest platforms. One of my biggest things that I care passionately about is that there is such a tremendous woe is me and doom and gloom tragedy narrative out in greater society related to dementia and dementia caregiving that just continues to precipitate that thought process.

[9:21] I'll use this as an example. By the time I'm done at night, I'm brain dead, and then I watch TV. It's my shut off, and I love medical mysteries, medical movies, you know, things related to first responders and stuff like that. And I've really noticed lately that a lot more television programs are addressing dementia in the storyline. But really, what irks me beyond belief is that they have this short little story arc saying, you know, It's only short-term memory, and the person goes from fairly functional to institutionalized in two episodes.

[10:04] And the family's devastated, and the person's in a facility because nobody can cope, and everybody's like, oh, woe is me, and doom and gloom, and this is just terrible. Well, now that we're adding these kinds of things into mainstream media, and if you go and hop into Facebook groups, and I do have a Facebook group, and I invite you to my Facebook group because I try very hard in my Facebook group to curate and not do this whole doom and gloom and tragedy narrative related to dementia and dementia caregiving in my group. But if there are huge big Facebook groups with 40, 50,000 people and you have a new diagnosis of dementia and you go into one of these groups and all you hear is what I call the verbal vomit of people complaining and, you know.

[11:01] You know, just all the negativity, none of the good things, none of the hope, none of the memories, none of the stuff that's funny. Of course, we're only going to precipitate that particular stigmatized feel. And I want to help change that. But what I found interesting, and these are the last two points related to the introduction, is that there are two studies. One came out in 2012 that shows 24% of people who actually are diagnosed with dementia themselves hide it from other people because of the stigma. That is terrible. That means that person who is living with dementia is ashamed that they have it, and therefore they don't want to tell people, which makes it even worse. And then in 2015, in the United States, only 45% of families and people in the United States that have a diagnosis actually thought that it was a medical diagnosis, that there's a medical reason for it. So 45% of people see it as a disease, as something going on.

[12:30] In 2015, which means 55% of people don't. They don't think they're, you know, they don't acknowledge that it is a disease process like cancer or something else, right? So let's talk briefly about the, you know, those are staggering numbers now that I think about it, to be very honest.

[12:51] You know, 24% of people living with dementia hide it because of the stigma. And And that makes me super, super sad. So if you have a family member who has dementia, please don't hide it. If you listen to one of my previous episodes recently, I just had a episode where we talked about, it's 127, where we talked about why it is important to tell people that someone you love has dementia. So go check that episode out. We talk a lot about the stigma and what we can do about it. So now let's go into the history, the history. So I've got my granny glasses on and I've got my cheat sheet in front of me. We're going to talk about the history. So the word dementia first came out in the records, in historical records, about 600 years A.D. By St. Isidore, the Archbishop of Seville. And the word comes from the Latin word dementia, dementus, right?

Early Awareness of Dementia in Ancient Times

[14:03] Dementia. Latin word D means deprivation or loss. Ment is the mind and.

[14:14] IA is a state. So, the word dementia in Latin literally means a loss of state of mind or out of one's mind, which is where the word dementia comes from. But did you know it occurred long before it was named. In about 2,000 before Christ, in the ancient Egyptian times, they were already aware that this happened to people 2,000 years before Christ, that some people had this start to happen to them. Then in, I did not write down the years, but Pythagoras in Greece classified life into six different stages, with the last two stages were regarded as the stages where your mind and your body started to decline.

[15:21] So Pythagoras in Greece, and then Plato, and yet again, I didn't write down the dates because I'm not a dates person, I'm a global person. Plato said old age caused dementia and inevitably happened as one became older, right? Now, we know that that is not true. And then Cicero, we've all heard of Cicero.

[15:49] Pointed out that aging, getting older, did not automatically cause changes in people's thinking. It was not inevitable. And this is true, or else none of us would know 95-year-old people who have nothing wrong with their thinking, would we? So it is not a normal part of aging. Even though Plato said that it was, it really is not a normal part of aging. And then around the second century.

Differentiating Delirium and Dementia

[16:23]  Aretheus, a doctor in Turkey, so now we have Turkey, described dementia in terms of two conditions, delirium, which is reversible, and dementia, which is irreversible. And in a next episode or in an episode coming up soon, I can go over what the difference is between a reversible dementia or a delirium and an irreversible dementia or dementia. So those were the early, early people. So very early on in history, we have documented that this happened to humans. Now, in the Middle Ages, there was a setback.

Middle Ages: Senility as Punishment

[17:15] So the earlier people recognized this as a change, and we were making progress. But then in the Middle Ages, there was a huge setback. And senility, which was considered another word for dementia.

[17:35] Was considered the fruit or punishment of man's original sin. sinned. Now, I know that you know that that is not true. The Bible is very clear. If you think of the passage where they talked about the blind man, where Jesus said, you know, the man was not blind because neither he nor his parents had sinned, but he was blind from birth so that the glory of God could be manifested in him. So we know that belief in the Middle Ages that senility was considered a fruit or a punishment of man's original sin is not true. And what I want you to hear, dear family caregiver, of anybody living with dementia or if you have dementia yourself. It is not a result per se of your particular sin, even though a particular sin could have contributed to it. So what I mean by that is there are certain types of dementia.

[18:55] And I will use Korsakoff syndrome as an example, which is a direct result of a person's habitual sin. So Korsakoff-Wernicke is a type of dementia that is 100% a result of alcohol misuse and abuse.

[19:16] Now that type of dementia is 100% a result of a person's sin. But for the most part, dementia is not like they said in the middle ages a result of people's original sin it is a part of the fact that we live in a fallen world just like any other type of disease process like cancer or a heart attack or you know death period.

[19:50] What is, you know, what is sin? It is the lack of conformity to the law of God. Do you feel alone and isolated and need a little bit more help and support unless the Lord comes? Then we're all going to pass away, right? So dementia is a part of living in a sin-incursed world. But it was, it is not, like I said, what they believe in the Middle Ages. At a time, so we can have fellowship where we can answer questions, and then where you can get some Christian guidance in 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.

[20:39] 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. What a terrible part of our combined history that people who really have something

Medical Acceptance of Dementia Term

[21:00] going on with them experienced that level of persecution. But then in the modern age, dementia was, the word dementia was accepted as a medical term in 1797 by Philippe Pinel. So 1797, that's when the word dementia was accepted as a medical term. And then in 1894, vascular dementia was coined. The word or the concept or the idea of a vascular type of dementia was coined in 1894 by a man called Binswanger, which now is called Binswanger's disease is a type of a vascular dementia. And then in 1910, and now we're coming to Alzheimer's disease. In 1910.

[22:06] What we now call Alzheimer's disease was named after Alois Alzheimer.

[22:13] Who was the first person who documented and wrote down what is called presenile dementia. Now, as a fun story, when we moved to Greenwood, South Carolina, and shout out to Alex,

Auguste Dieter: An Early Alzheimer's Case

[22:29] if you ever listened to this episode, I met a occupational therapist by the name of Alex Alzheimer. And because of my interest in Alzheimer's disease, I did ask him, I'm like, are you related to Alois Alzheimer? And he's like, yes, distant relation. He was his great uncle or something bizarre like that. So two degrees of separation between me and Alois Alzheimer's family.

[22:58] So I think that's kind of fun and cool. But now I'm going to talk about the first person who was documented in the medical history with Alzheimer's disease. And I'm going to tell her story a little bit because it really, there's so many studies that come out about things that we can do to mitigate the responses and to change things. But of a lot of the types of dementia, not all types of dementia are equally hereditary. But I do believe that early onset dementia, and I'm not talking about.

[23:46] Technically, early onset dementia is Alzheimer's disease is considered to be before the age of 65.

[23:56] But the people that I've seen in my career and that I've worked with that truly have early onset Alzheimer's disease, they are young. They're in their 40s and 50s. And that seems to be a more hereditary type of dementia. Another dementia that strikes people in an earlier years is frontotemporal dementia. So when we have these younger people, like truly young people in their 40s and 50s being stricken by this, those are the people that I truly believe have a a hereditary type of a dementia. But back to our first person who has the classification of early onset Alzheimer's disease.

[24:49] Did you know that caring for a person with dementia doesn't have to be this hard? If you are struggling and you would like to join our next free workshop, The topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout. I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop on Saturday.

[25:32] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[25:47] So here is her story. Her name was Auguste Dieter, D-E-T-E-R. And she was born in 1850 in a working class family in Germany and was one of four children in a very, very poor home growing up. And her father died when she was very young, which meant that she had to go to work when she was 14 years old. But despite that, her mother had done a pretty good job of actually educating her for that period of time in the 1850s. So at 14, she started to work as a seamstress in a work environment. So I want you to picture this, you know, it's 1850s. There's probably not a lot of, you know, heat and cooling and things like that. And now she's working to help support her parent, her mom, and her siblings.

[26:51] But when she was 23, she got married to a man by the name of Carl, Carl Dieter. And they led an ordinary in the 1800s, the late 1800s. So this would have been 1850 plus 23, so the 1870s. In the 1870s, 80s, 90s, they lived a very normal, ordinary life, as ordinary a life as you can imagine living in that period of history. And they were married for about 28 years. They had children, and then her behavior changed changed fairly quickly. And she started, and I know that you can picture this if you have had or been around a person living with dementia, you'll start to see some of the.

[27:45] The signs that he was noticing, and these were documented in the medical reports, she started accusing her husband of adultery. Now, I don't know about you, but that is one of the biggest delusions people living with dementia will frequently have is a delusion of adultery or a delusion of theft, right? Those two delusions are very frequent. So she started to have this delusion that her husband was having adultery. She started to lose her short-term memory. She was unable to start, she was unable to do her housework. She started to become careless in her housekeeping. Then she started to hide things from people, probably because of a delusion.

[28:42] Oftentimes when people are hiding things, it's because they think somebody's going to steal their stuff. So she started to hide things intentionally. Then she became unable to cook meals for her family. She started having trouble writing and she started having trouble speaking to people and having conversations. And then she started to have insomnia. So she wasn't sleeping at night and she totally lost her sense of direction. She couldn't find her way around her house and her community anymore. Any of you guys ever experienced that with your loved ones? So another episode that I recently did was earlier today.

[29:32] Last week, it was how to know whether memory loss is the first sign of dementia. So it's episode 130, where we talk about some other signs of dementia, and a lot of these are on that list. So memory loss is oftentimes the thing that we say, but it is frequently not the first thing that we notice when we actually know what we're looking for. And her husband, Carl, took her to the hospital and they admitted her to the hospital at 51 years old. She couldn't name common items. She couldn't tell them what a fork was. She couldn't tell them what a spoon was. She couldn't respond to her own name. But what was interesting is that she responded to her husband's name. So she kind of knew a little bit, but she didn't know who she was anymore, but she knew who he was. And interestingly enough, a lot of her symptoms, a lot of what she experienced was significantly worse at night. Does that sound like sundowning to anybody else? Because to me, it does. And so Alois Alzheimer died.

[30:51] Documented all of this, and he called it presenile dementia. Now, she remained in a hospital situation for the remainder of her life. Alois Alzheimer had an agreement with her husband that when she passed away, that her brain would be donated so that they could take a look at it. So hers was the first brain that they kind of were able to take the symptoms that they were seeing and the brain and put it together and take a look at the brain. She died at the age of 55 and was the first person who was diagnosed with early onset Alzheimer's disease.

[31:34] When they did the autopsy of her brain, they found plaques and tangles in her brain, which is what we know know now to be, you know, neurofibrillary and tangles in the brain. And so I tell you her story because her story is one of the first documented, true documented stories of Alzheimer's disease, specifically early onset Alzheimer's disease. But I find her story to be fascinating. Fascinating like I said her name is Auguste Dieter and she was 55 when she passed away and Alois Alzheimer took her brain and did an autopsy and they were able to document her.

[32:26] Life in that way and what a blessing that is because the research based off of that continued to develop and continue to develop. Interestingly enough, Alois Alzheimer didn't live significantly long either. He passed away at 51 years old with some sort of cardiac event, if I remember correctly.

[32:47] But I thought today's episode would be a fun way of learning a little bit mor

lizette on her laptop

Ending the Stigma Around Dementia

[32:47] But I thought today's episode would be a fun way of learning a little bit more about dementia and dementia and how it impacts the world. And really, my biggest takeaway for anybody listening, and one of the biggest things that I want people to really start to do is talk about it. Because I know that there are, I go to a big church that has about 300 people in. I only know of three people, four people in the congregation that are helping somebody living with dementia. And I know there are more, five if you want to count me, but nobody talks about it. Nobody talks about the fact that these things are going on in conclusion for today's episode i really want us the biggest takeaway is that people are continuing to suffer needlessly because of false conceptions of dementia this sense of continuing to.

[33:58] To stigmatize people living with dementia. You would never believe a person who has lost a limb, like a leg, due to an amputation, that they are falling on purpose because they don't have a leg. We can see that there's something wrong. We know that there's something wrong. Well, you cannot You cannot see a broken brain. You cannot see the changes in a person's brain, which means it's easy for us to then believe that this person who has a brain that is no longer firing the way it always did, that they're doing it on purpose. And so we need to de-stigmatize dementia.

[34:46] How do we do that? One person at a time. You know, the old joke, how do you eat an elephant? One bite at a time. What are some asks that I have for you? Number one, do not join huge big Facebook groups that are full of the negative narrative. Flee from them. Come join my Facebook group. It is for right now still called Dementia Caregiving for Families. The name is going to change at the beginning of July, I'm going to be changing the name of the podcast to Christian Dementia Caregiving. But right now it is still Dementia Caregiving for Families. But join my Facebook group because I work very hard on curating a positive and encouraging environment for family caregivers of people living with dementia. Number two, talk to people about what's going on. There are at least five people, four people other than me in our church of about.

[35:54] 300 people that I know are helping people living with dementia. They know what I do and nobody comes and talks to me about it. Nobody comes and asks me questions. Nobody is talking in our churches about the fact that somebody they love has cognitive loss. I know why we do that because we're trying to protect the person that we love. But I ask you to go listen to the episode.

[36:29] 127, why it is important to tell people somebody has dementia, because we need to destigmatize dementia. So don't join these huge Facebook groups if they're negative Nellies. Come join my Facebook group. Find a smaller Facebook group that is more positive, more edifying. Talk to people about what your struggles are with dementia and dementia caregiving. Tell people, tell the people around you what is going on. Like I said, today's episode was a little unique and different because I am unique and different. And I thought it would be fun to do a history lesson related to dementia and debunk the myth that dementia is a new disease. It's not. So I hope you enjoyed this fun little episode. May the Lord bless you and keep you, and I will see you in the next episode.

[37:31] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve review. 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. It. Be a part of our community where we seek to find peace of mind and ease despite a dementia diagnosis. So join today and see you next time as our flight takes off.

lizette cloete on laptop

Subscribe To

Christian Dementia Caregiving Podcast

Ever Wonder How To Know What Is Causing Your Caregiver Stress?
Take Our FREE Caregiver Stress Assessment Today!
https://www.thinkdifferentdementia.com/quiz

Join the Christian Dementia Caregiving Facebook Group today for more support:
https://www.facebook.com/groups/1301886810018410

Are You A Christian Dementia Caregiver Struggling To Cope With Caregiving?
Join the FREE "Ask the Dementia Mentor" Monthly Meet Up! And be on the podcast, get support and your questions answered.
https://dementiacaregivingmadeeasy.com/ask

Register For Your Personalized Dementia Care Audit
Get Individual Guidance & Support! Only One Available Per Month. Be a Co-Creator of the podcast and get a customized audit of your caregiving journey.
https://www.thinkdifferentdementia.com/audit

Enjoy our podcast? Please take a moment to leave us a review on Apple Podcasts and Spotify —it really supports our show!
https://podcasts.apple.com/us/podcast/dementia-caregiving-for-families/id1716187550

Subscribe To Our Newsletter

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.

>
Success message!
Warning message!
Error message!