An Open discussion on Frontotemporal Dementia - Encore

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello, I'm here to bring you our host, Alzheimer's and dementia expert, bestselling author, and world-renowned public speaker, Lisa Skinner. On tonight's episode, we're going to be discussing frontotemporal lobe dementia. And the difference between Alzheimer's and this type of dementia. This episode comes on the heels of actor Bruce Willis's 68th birthday. And as many of you may know, the actor was diagnosed with this rare form of brain disease. And, you know, he and his family have been dealing with the challenges of it ever since. Some of you may have seen that Bruce Wolters' current wife recently posted a video about some of the challenges that she faced as a caregiver to her husband and just some of the grief and some of the sadness that comes along with some of those challenges. And, you know, it was a really heartbreaking video. And, you know, it was a reminder that, you know, brain disease does not care. How many number one movies you've had, or how cool you look on a movie screen. One more interesting thing about this story in the media is that even today, if you read the media stories, many of them say that Bruce Willis was diagnosed with aphasia. And I know something that— that's something that Lisa Skinner Skinner Skinner has something to say about. So Lisa, Welcome. I'm looking forward to today's episode. And when you see these media stories that say Bruce Willis was diagnosed with aphasia, what is your reaction?

That is a really good question, one I'm definitely going to address in tonight's episode. And I think it's an important point to address because just kind of the way it was presented to the world. About what was the diagnosis of Bruce Willis. So with that said, thanks again for the wonderful welcome and introduction, Ken, and hello again to all of you who have tuned in to listen to this episode of the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I'd like to shout out a very warm welcome to all of you who have joined us today. Thank you for being here. The purpose of this show, for those of you who aren't aware, is to talk about every aspect of Alzheimer's disease and dementia. That's going to include the good, the bad, and yes, the ugly. The goal here is to get to the truth, dispel the lies and myths, and unveil the The secret faces of Alzheimer's disease, so you can understand what it's truly like for people to live with a brain disease. My hope is to zoom outside the paradigm of it exclusively being a memory loss condition and to shift people's understanding of just how dramatically this disease impacts lives of those who have it, as well as their caregivers, the family members, well, for that matter, anybody who's involved in the life of a person living with dementia. My story started 50 years ago when my grandmother began displaying some very unusual behaviors. I'd go to visit her, and she started insisting that there were birds living in her mattress that would come out at night and peck at her face. She described to me these rats that were running along her walls, and she said they were invading her house. Then she talked about the men who were trying to break into her home to not only steal her belongings, but to harm her. It turned out that that was the beginning of our 20-year journey with my grandmother's Alzheimer's disease. And then fast forwarding a few years, I ended up becoming a behavior specialist. And I have actually spent the last 30 years helping families and caregivers understand the devastating effects of the disease so they too could learn how to best live with the unexpected surprises that emerge day after day. That way they could spend their time focusing on what truly matters, And that, of course, is spending quality time with their loved ones. And I'm here now for you to help you understand what truly living with Alzheimer's disease is about. I have also authored several books on the subject, written a training program, and believe it or not, have watched 8 of my own family members fall prey to one of these brain diseases that causes dementia. I'm a certified dementia care trainer through the Alzheimer's Association, and I recently became a certified dementia care practitioner. You know, there are so many aspects of living with dementia that are truly unexpected and can surface out of nowhere at any time, and these are what I call the hidden or secret faces of Alzheimer's disease. And as many of you know, they do show up unannounced and are completely unpredictable. And that's why it's so important to be prepared for anything that emerges on this journey. Knowledge is definitely power, and I'm here to arm you with that knowledge so you too can have the power to negotiate the many challenges you will face having a loved one, or while caring for someone with dementia. Because living with dementia is unlike anything anybody could ever imagine. Kind of like falling into a rabbit hole and entering a world unlike anything you've ever known. One that will become completely unfamiliar to you. That said, it's equally important to not only understand what will occur on a day-to-day basis, but why they occur. What is happening to the person's changing brain as they progress through the various stages of Alzheimer's disease? Only then will you be able to be prepared for what will challenge you, and that will be the key to being prepared and to not being caught completely off guard. So happy birthday, Bruce Willis. The family of actor Bruce Willis recently announced that he would be stepping away from acting following an aphasia diagnosis. Now, aphasia is a language disorder that can impact an individual's speaking, writing, and comprehension. It's also a language disorder caused by the damage to the area of the brain responsible for expression and comprehension. Now, when I first heard about this aphasia diagnosis for Bruce Willis, I was completely taken aback because I'm very familiar with aphasia, but I've only known aphasia as being a symptom that's caused by a brain disease. So let me, let me set the record straight for you all on that. Bruce Willis has more recently been diagnosed with what is called frontotemporal lobe dementia, and the acronym for it is FTD. So frontotemporal lobe dementia is a brain disease, and it's the brain disease that Bruce Willis has that has caused his language impairment. Aphasia is not a specific disease. The frontotemporal lobe is the disease that caused the aphasia. Many people with brain diseases suffer from aphasia. So this is one of the reasons why they have a difficult time communicating the words that they're trying to tell you. It is caused by aphasia, which is caused by a brain disease that we develop. And again, like we talked about in several other episodes, there are over 100 different brain diseases that cause dementia. So again, aphasia is an inquire— a Aquired loss of language skills. This is a distinct situation from just an inability to speak, for example, which may come from paralysis of the lips or tongue, but really goes beyond that. It would be both speaking and writing or understanding or listening and reading. And what causes aphasia? Damage to any part of the brain that facilitates language can cause it. Depending on which part of the brain is injured, the aphasia can take different forms. The most common cause of aphasia is actually a stroke, but other things can also do it, including a traumatic brain injury, a neurodegenerative disease, which is frontotemporal lobe dementia and Alzheimer's disease, Tumors can cause aphasia and some infections. So Alzheimer's and frontotemporal lobe dementia are, again, neurodegenerative illnesses. Frontotemporal dementia selectively attacks part of the brain that is responsible for language. So the aphasia is the hallmark of this particular type of brain disease. Where short-term memory loss is the hallmark of Alzheimer's disease. So instead of the slow erosion of memory loss that people more commonly associate with Alzheimer's disease, with frontotemporal lobe dementia, you will see a slow progressive loss of language function. What is frontotemporal dementia? Well, it affects the frontal and temporal lobes of the brain. It's sometimes called frontolobe dementia, and it used to be known as Pick's disease. So if you've ever heard of Pick's disease, that is actually synonymous with what is more commonly referred to today as frontolobe or frontotemporal lobe dementia. The affected areas of the brain control a person's personality, their emotions, their behaviors, and their executive functioning, and their speech. The signs and symptoms can be very different from one person to another. Now, people were often misdiagnosed, and thought instead of having a brain disease that they were suffering from depression or mental illness, schizophrenia, or even Alzheimer's disease. At first, frontotemporal disorders leave the other brain regions untouched, including those that control the short-term memory. Frontotemporal dementia is divided into 3 categories based Focus on the most prominent symptoms in each. The behavioral variant frontotemporal dementia affects personality and behavior. Primary progressive aphasia affects— first affects speech and then behavior. And progressive non-fluent aphasia causes loss of ability to recall and speak words. The most common signs and symptoms of frontotemporal dementia are extreme changes in behavior and personality. And it's been my experience in 30 years that I've worked in the elder care industry that this rarer form of brain disease, and because it is attacking the part of the brain that, that controls personality and emotion, is the one that causes a person to display extreme aggressiveness and personality and behavioral changes, and most often does need to be managed with psychotropic medications. In the early stages of frontotemporal dementia, people typically have one type of symptom. As the disease progresses, more types of symptoms will appear as more parts of the brain are affected. And this is true with Alzheimer's disease and, and the other brain diseases as well. They kind of each have a hallmark of where they start attacking, what part of the brain they start attacking, and then it moves on to other parts of the brain. It's important to know that these behaviors are caused by the physical damage inside the brain and aren't things that the person can control or contain. Often they aren't even aware that their behavior has changed or that it's become a problem. So some of the more common behavioral and personality symptoms that we see with frontotemporal dementia are once again changes in personality and mood, becoming depressed, self-centered, or withdrawn, avoiding socializing or being unwilling to talk, repetitive or obsessive behaviors, lack of inhibition or lack of social tact, a decline in personal hygiene, And just to kind of rewind for a second, when I say social tact, what I've seen, types of behaviors that emerge from people who suffer from SPD, is they will not hesitate to say something really mean or nasty to somebody like, "Boy, you sure look ugly today." "Your face looks like a worm to me." They're not doing this to intentionally be mean. They just have absolutely no inhibitions anymore. They've lost the ability to control and have inhibitions and tact, social tact. And these types of comments come right out of their mouth. So my advice is if that happens, and it's a tricky compromising situation to be in with your loved one, you really should take the time to explain that this is common behavior of somebody who suffers from frontotemporal dementia. And don't be completely caught off guard if that happens, because it's very common. Other behaviors that emerge through the brain disease frontotemporal dementia is a lack of awareness of thinking or behavioral changes. They tend to have a loss of empathy and other types of interpersonal skills. Also, this is a big one, increasingly inappropriate actions, not only verbal, but also physical or sexual behavior. Changes in eating habits, especially overeating. Weight gain due to overeating, and putting things in their mouth or trying to eat inedible objects. However, people with frontotemporal dementia can usually keep track of day-to-day events and understand what's going on around them, which is very different from people who suffer from Alzheimer's disease. Common movement What are the symptoms? In later stages, people develop movement problems with frontotemporal dementia. Some people may develop tremors, rigid muscles, muscle spasms or weakness, poor conditioning, and difficult swallowing, which is also a common symptom of Alzheimer's disease. Now, there is no single test that specifically diagnoses frontotemporal dementia. Just like Alzheimer's disease, there is no single test. So doctors must try to identify certain characteristics while ruling out other possible causes like liver or kidney disease. It basically comes down to a process of elimination And it's very difficult to diagnose in the early stages because the symptoms, like Alzheimer's disease, often overlap with other conditions. It's usually not until the mid-stages of the disease where they actually, through this process of elimination, try to narrow it down to one of these other causes. So the biggest differences between Alzheimer's disease and frontotemporal dementia is these behavioral changes that I illustrated. Changes in behavior are an early sign of FTD and often are the first noticeable symptom. Behavior changes are common in Alzheimer's disease, but as it progresses into the later stages, and not so much in the earlier stages like they do with FTD. Memory loss. Now with FTD, the problems with memory typically show up in the advanced stages, where with Alzheimer's disease, it's in the later early stages or mid stages. In Alzheimer's disease, memory problems show up earlier in the disease than in FTD. And tends to be a more prominent symptom. The frontotemporal dementia risk factors are, well, actually today the only known risk factor for developing frontotemporal dementia is if you have a family history of dementia. But not everyone with a family history will develop it. It's estimated that more than half of the people diagnosed with frontotemporal dementia don't actually even have a family history of it. And unfortunately, like other dementias, it's a progressive disease with no cure. That means the symptoms will worsen over time, and the speed of decline will be different for each person. Frontotemporal dementia shortens a person's life lifespan? Each person is different, but most people with FTD live 6 to 8 years after the first symptoms appear, whereas with Alzheimer's disease, the average lifespan is 8 to 15 years. So double the lifespan with Alzheimer's disease than with FTD. It's a, it's a faster progressing disease than Alzheimer's. I think I told you in another episode, my grandmother who had Alzheimer's disease, she lived with it for 20 years. That was a long, long course. There are medications, as I mentioned, that can be used to improve the quality of life. And in the 30 years that I've been observing FTD, which again is a rarer form of brain disease, most of the people that I have seen who suffer from FTD, their behaviors do need to be managed with psychotropic medication because the behaviors and the personality changes and the aggression can be extremely severe and sometimes even get out of control. Now, it also— another big difference The difference between Alzheimer's disease and frontotemporal dementia is that it often occurs between the age of 45 and 65, but can show up as early as 20 or as late as the 80s. Whereas Alzheimer's disease, we talked about this on our risk Factor episode last week, the common age where Alzheimer's disease starts to show up is after the age of 65, with the exception of early onset Alzheimer's, which shows up before the age of 65. So this one tends to start impacting a person and attacking their brain when they're much, much younger than people who end up developing Alzheimer's disease. And the last thing is frontotemporal lobe dementia is the fifth most common cause of dementia. Remember, Alzheimer's disease is the number one cause of dementia, and then vascular dementia is number two, and that type of dementia is caused by stroke and mini strokes. So, all of these things we need to talk about because it takes very specialized knowledge and training to know how to effectively respond to the situations that will arise with a damaged brain to avoid any situation from escalating into an extreme one. And these extreme reactions are what we call catastrophic reactions. And unfortunately, we know that no amount of reasoning can talk the person who is experiencing many of these symptoms out of their beliefs. So we must rely on alternative strategies to manage them. Now, 90% of people with dementia will display the behavioral impulses that typically accompany brain disease. And that definitely is reason enough to be prepared. I really want to emphasize that all of this really is even more critical with frontotemporal lobe dementia because of the aggressive behaviors that show up as a result of the damage done to the brain with this disease. So, I hope this has been informative. I hope this has been helpful. There are so many different types of dementia. And the other thing I think I might have mentioned once before, but I think it's important to also understand that there are over 100 different brain diseases that cause dementia. But the one thing that's really interesting is that people can actually be suffering from what we call mixed Dementia. And when a person has mixed dementia, they have more than one brain disease that's attacking various parts of their brains at the same time. So it's not unusual for somebody to have Alzheimer's disease and vascular dementia at the same time, or Alzheimer's disease and frontotemporal lobe dementia. At the same time. So that's actually more common than people realize. And it is very helpful to understand the different hallmarks of the different types of brain disease. They all kind of inter— the symptoms and the signs all intermingle, and this is what we call dementia. But there are specific hallmarks that are specific to each type of brain disease that caused the overall dementia. So, thanks for being here. I want to thank you so much again for listening today. We have so much to cover in our upcoming episodes, and I do want to provide you with the information that you will find helpful and valuable throughout your journey with this disease. Remember, dementia awareness is every day. Kindness is the ability to speak with love, listen with compassion, and act with patience. And these are all very necessary attributes to have in order to outlast brain disease. One last note. It's really important for me to for you to know that this show is about you. Yes, I've had 30 years of experience and expertise, and I'm hoping that everything I have learned, strategies and therapies, will be able to help you and your loved one have an easier time while struggling through this disease. I do know how difficult it is. Therefore, I actually would love it if you would send me your comments and suggestions on what topics you'd like me to cover on my weekly show. If you're listening to this on YouTube, or if you got here through our social media page, just go ahead and leave your comments or questions, and I promise I will do my best to address them. I will genuinely look forward to receiving your thoughts and ideas, and in the meantime, take care of you. Talk to you next week.

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