Inside Dementia's World A Virtual Tour

This is the True Lies and Alzheimer's Show, brought to you by Global Media Network LLC and Passionate World Talk Radio. Passionate World Talk Radio is a wholly owned subsidiary of Global Media Network LLC, and our motto is, as always, to educate, enlighten, and entertain. I'm Ken Paglia. I'm here to introduce your host. She's an Alzheimer's and dementia expert, a best-selling author, and a world-renowned public speaker. She is Lisa Skinner, and we have a fantastic episode planned for you today. Lisa will be talking about what it's like to live with Alzheimer's and related dementias from the perspective of the person who suffers from the disease.. And in that respect, she'll be giving you a unique window into what it's like to live in their world, the world of those we love who suffer from this brain disease. And in her What's New section, Lisa will be going over heart attacks and how they may be linked to accelerated cognitive decline. And with that, I'm very excited to turn it over to Lisa Skinner Skinner. For today's show.

Hello everybody, welcome to another episode of the Truth, Lies Alzheimer's Show. I'm your host, Lisa Skinner, and based on what Ken shared with you, you're probably wondering how is it possible for us to imagine what it what it could be like to walk in the shoes of a person actually living with dementia. I think that's a really reasonable question. But I personally have had the opportunity to experience what that is like. And how did I get that opportunity? There actually is a company out there who has designed a virtual tour that simulates what it's like for somebody living with Alzheimer's disease. So, what they do— the name of the company is Second Wind Dreams. And a few years ago, the tour was at a nursing home here in the town that I live in, and they invited people to come into the home. And what they did was they put different apparatus on us and gave us instructions, and, uh, then told us to go into this room and follow the instructions we had been given, try to remember everything that we were told to do. And all of us who went through this experience literally got to experience what it's really like for people with Alzheimer's disease and dementia. So, what they did and what it helped us realize, for those of us who need help gaining empathy and an understanding of what what dementia actually does to a person, this geriatric specialist by the name of P.K. Beville devised this Pasaden Virtual Dementia Tour for a way for those of us who have healthy brains for us to walk for a time in the afflicted person's shoes. The tour includes 4 components that alters our subject's senses and perceptions to simulate the day-to-day experiences of people with dementia and Alzheimer's. So, what they did was when I arrived, they gave me some goggles to wear, and what the goggles do is it makes wearer sees his or her surroundings through a yellowish-orange haze that many people experience as they age, and which included device that simulates macular degeneration, which diminishes depth perception and loss of peripheral vision. And many people with dementia. This is how they see the world. Then they had us put— had me put on these shoe inserts, and the purpose of the shoe inserts were to simulate uncomfortable pins and needle sensations in the bottom of my feet to help me approximate a dementia patient's steffling gait, which is very common. The intention was to try to experience what peripheral neuropathy feels like, which is a common aspect of dementia and discourages a person from— who has dementia from moving around a room to engage with others. I had to put on these special gloves, and the purpose of the gloves was to hinder my sense of touch and impair my ability to feel my fingers and hinder my ability to turn simple tasks like buttoning a shirt or setting the table into major challenges. In dementia sufferers, Beville explains, the part of the brain that tells the sensory ending in the hand to feel is impaired, leaving the person to fumble with everyday tasks. And then the other component was for me to put headphones on, and they covered both my ears entirely. So, it felt like I was walking around in a bubble with sounds from a confusing tape playing in my head, which was a mix of voices, laughter, background noises like a television playing, roaring sounds, and startling responses. So, I was able to— genuinely experience how these disorders really take away from a coherent mind, and it was very disturbing. So, it was just an incredible experience. I've been working with people who live with dementia for— well, including my grandmother now, going back 50 years. And until you experience this simulated virtual tour that they have designed to really give you a more accurate experience of what it's like to walk in their shoes, it is an eye-opening experience. And I'm so fortunate that I had the opportunity to do that. One woman who did the tour said perhaps the most compelling measure of the tour's effect are the stories that people tell. She said, "I would get so frustrated with my grandmother who's had dementia for years. He'd ask the same questions over and over and over again." tell the same stories over and over and over again in the same conversation and was always confused. But then she said after taking the tour, she felt overwhelmed with emotion. She felt bad that she had not been treating her grandmother better. Now, after taking the tour, she can't imagine what it would be like to experience not only the physical deterioration associated with dementia, such as pain in your hands and your feet constantly, but also the confusion that's associated with living with dementia. And she concluded by saying, it's awful not to be able to see and hear in the ways that a healthy person can. She also said that the tour definitely improved her relationship with her grandmother. The goggles made her understand how impaired her vision is, so then she would be able to actually look in her eye. The headphones helped her learn that she needed to speak to her grandmother more clearly. As opposed to saying something casually to her across the room and expecting that she would hear it and understand it in the way it was intended, which she realized it just did not turn out that way. She met her where she is instead of trying to get her to meet her where she was. There's a great peace associated with that for both the person who has the healthy brain and for the person who does not. And she is grateful that she was able to experience this and really have a better understanding of what her grandmother lived with day after day after day. That's the way I felt about it, too. So, I have a question. Have you ever been talking to a few friends and noticed that all of them have different expressions while they listen? Some listen expectantly with raised eyebrows. Some lean in intently, and some look passive. Well, a large majority of communication is nonverbal. And we do not have to say a thing to make a point. In fact, you could say we listen with our eyes. This is a highly evolved brain process involving many different parts of the brain. For example, you could say, "The man winked." But unless you see the nonverbal action accompanying the wink, it is impossible to know its true meaning. Did he mean it to signal further attention, agreement with a point made in conversation, or was it a benign facial movement? Without nonverbal context, it is impossible to know. Nonverbal interpretation happens in a flash as everything works together in the brain with perfect timing. So to give you an idea of just how complex this is, imagine how many engine parts it takes for a car to run smoothly. All parts are necessary and work together with perfect timing. Now imagine that one spark plug is damaged. The current necessary to spark the plug is damaged, causing the entire engine to misfire. Fire and making connections to all of the other engine parts impossible. That tiny part affects the entire engine. So, imagine your brain as the engine. Each part of your brain is important for you to interpret communication. If even one part has become damaged due to the misfiring of brain cells, You will not be able to understand and read facial expression, nonverbal body language, or visual cues. Information coming into your brain through your eyes becomes garbled. It's almost impossible to make sense of what you see. The spark plugs in your brain are broken. You can see things, but you cannot interpret them. We sometimes assume that if a person with dementia can see, they can understand what they are seeing. Well, this is definitely a misconception. If you find that your loved one has difficulty responding to nonverbal or simple visual cues, it is likely the spark plugs are not firing and making the connections. Take this nonverbal cue from your loved one. They are telling you they need more than visual information. They need coaxing. They need guidance. They need a soothing voice and a caring touch. So be aware that those with dementia are often unable to interpret visual information and will often misinterpret what is going on around them. They may accuse you of doing things that are not actually happening because of this misinterpretation. Simply put, try not to get into a verbal battle with them about this. The spark plug is simply not working, but we can fix the spark plug. So simply change the subject and move on to something else. Damage to parts of the brain result in loss of peripheral vision. If a person with dementia is spoken to or approached from the left or right, it is likely that they won't know what is being said to them or who is with them. In addition, when things are on the bedside table, it is likely that they won't know it's there because it's to their side. Communicate with them from the front and make sure things they need to do are right in front of them. Additionally, loud noises cause agitation and sometimes difficult behavior challenges. When loud sounds are in their environment, they can't tell you that the noise is bothering them. As a result, they act out their discomfort by increased pacing, refusal to eat, and lash out slashing out at others. So, a calm, relaxed area works best for them. Even though it may seem that the person with dementia is not aware of communication, they all respond to a caring touch or a kind word. The more that we can tell them they are doing fine and that we will be there for them, the better they seem to do. They like to be told they are cared for, and they even respond well to a caring touch. Studies show that people with dementia even have less cognitive decline when positive reinforcement is frequently used. So, there are some really good tips and recommendations and strategies to use for the person you're caring for with dementia or your loved one. And being able to take the simulated tour just reinforced to me that everything I just described to you is actually the way that the person with dementia sees the world, feels the world, and hears the world. There was no confusion about that. It really helped. Me understand it from their perspective. And like the lady who shared her experience, it certainly gave me a much clearer and unclouded understanding of what it was like to walk around in the shoes of somebody who lives with dementia. So, it was an extraordinary experience. I hope other people have the opportunity to find a virtual tour and experience the simulated experience of living with dementia. It was— it was just extraordinary, and you'll never think about dementia in the same way again. So my— what's news Article today is on heart attacks may be linked to accelerated cognitive decline over the time. And it was published September 21st, 2023, so less than a month ago. And I just want to bring to your attention that I've done a segment before on risk factors. And I have shared with everybody that the number one modifiable risk factor for increasing a person's risk of developing Alzheimer's disease is cardiovascular disease. So this is consistent with that finding, and this is what the article tells us. Individuals who have one or more heart attacks in their lifetime may experience faster long-term cognitive decline according to an NIA-funded study. Heart attacks were not associated with cognitive decline immediately following the event. The findings published in JAMA Neurology, that's J-A-M-A, suggest that heart attacks are an important risk factor for cognitive decline, even after someone has recovered from the heart attack itself. A team of researchers led by Johns Hopkins University set out to discover if experiencing a myocardial infarction, or heart attack, is associated with subsequent changes in cognitive function. The researchers analyzed pooled data from 6 NIH, National Institutes of Health, funded longitudinal cohort studies of cardiovascular health that had been conducted from 1971 to 2019. When participants entered these studies, they were on average 64 years old and had no history of heart attack stroke, or dementia. In addition to sharing their health records, they took cognitive tests measuring their memory, reasoning, and decision-making skills over time. For this new study, the researchers analyzed data from 30,465 of the cohort study participants. They first identified 1,033 participants who experienced a heart attack in their lifetime and then examined their cognitive test scores in the years before and after the event. Participants who had a heart attack generally did not have any change in cognitive function at the time of the event. However, in the years that followed, they had faster rates of cognitive decline than those who had never had a heart attack. These results added to a growing amount of evidence point— pointing toward a link between heart and brain health. Additionally, the findings could inform how healthcare providers monitor and discuss risk for cognitive decline in their patients after a heart attack. Future studies may also explore how gender and race interact with the relationship Between Heart Attack and Cognitive Decline. And this article was released on the official website of NIH, which is the National Institutes of Health, nia.nih.gov. So the thing that's kind of interesting correlation here is the statistics that I have known that the number one modifiable risk factor is cardiovascular disease. And when I say modifiable, what that means is if you have heart disease and you're being treated for it, then that could negate it from being a risk for you to develop dementia or Alzheimer's disease after the age of 65. What this study is telling us is they have found a correlation between having a heart attack and actually experiencing cognitive decline. So, we're talking about two different things all related to a heart condition. So hope that gives you some food for thought on that topic. So that will conclude our episode for today. Before we say goodbye, I'm going to turn the mic back over to Ken. He does have a couple of announcements, but I'll be back to say goodbye in just a few minutes.

Great information, Lisa. I really appreciate it. I'm quite sure all your listeners do too. And to all of our listeners out there, thank you for joining us for today's episode of the Truth, Lies Alzheimer's Show with your host Lisa Skinner. If you'd like to hear this program again, it can be found on our website at passionateworldtalkradio.com under the shows tab. You can also search for us on YouTube And if you're on Facebook, you can find Lisa by searching for Lisa Skinner Author. If you're interested in Lisa's books or training programs, and I highly encourage you to check both of those out, you can go to truthliesandalzheimers.com. And all of Lisa's books are available on all major bookselling platforms, including Amazon and Apple Books. And we highly, highly recommend the audio version of her book, Truth, Lies Alzheimer's: Its Secret Faces. And with that, Lisa, take us home.

Thanks, Ken. I just want to thank everybody again for listening today. I feel I have so much to cover in our upcoming episodes, and I want to share my knowledge and expertise and experiences with you. Every week. I hope that I'm providing you with information that you will find helpful and valuable throughout your journey. Remember, dementia awareness has to happen every single day, and kindness is the ability to speak with love, listen with compassion, and act with patience. These are all very necessary attributes to have in order for all of us to outlast Alzheimer's disease. With that, I'm going to say I look forward to bringing you another new episode next week and appreciate you all being here, and I look forward to you coming back in the future, and we'll talk to you soon. Thanks again for being here. Bye-bye.