Through Their Eyes: A Window into Living with Dementia

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.

Welcome back, everybody. I'm Lisa Skinner, your host. I have something really, really special planned for everybody today, and I'm really excited about it. I'm doing something a little different. I wrote a script and a PowerPoint presentation that really helps people understand what it's truly, truly like for people who live with Alzheimer's disease and dementia. So that is what I'm presenting for you today, and I hope you really love it. I'm very proud of this presentation. So without further ado, we will get started. The name of this PowerPoint presentation is called Through Your Eyes. Today, I'm going to unveil the complex realities of the true world that people who have Alzheimer's disease and dementia really live in from their perspective. Going beyond common misconceptions about memory loss and confusion. So welcome to this presentation. So please join me as I guide you through a glimpse into the unique world of individuals living with Alzheimer's disease and dementia. Alzheimer's disease and related dementia as we all know, affect more than just memory. It also impacts a variety of cognitive abilities in many complex ways. And even though millions of people worldwide are currently affected by one of the over 100 to 200 brain diseases that cause dementia, it remains one of the most misunderstood and feared disorders today. This is a fact. It's true. Therefore, I want to illustrate how individuals living with Alzheimer's disease and dementia realistically perceive their worlds to enable others to grasp a better understanding of life from their perspective. I'm going to try to accomplish this for you by drawing parallels to one of our all-time favorite childhood stories. I hope everybody recognizes the title. It's Alice in Wonderland. Now, I did this for a couple reasons. One, because I have recognized so many similarities between the whimsical journey that Alice takes through Wonderland and the journey that people living with dementia are actually on. And two, because it's a story that almost every one of us can relate to. From today's presentation, my goal is for you to take away a deeper understanding of how brain diseases like Alzheimer's ultimately undermine a person's ability to function effectively in their daily lives. How loved ones and caregivers can resourcefully navigate the daunting challenges that will inevitably accompany them on their journey. How this knowledge may influence your understanding of the importance of a person-centered approach to dementia care and how to tailor that approach to the needs and preferences of each and every individual who lives with dementia in order to considerably enhance their overall quality of life and sense of dignity. Also, I want you to leave with a new awareness that an altered reality of individuals living with Alzheimer's and dementia can cultivate greater empathy and understanding towards their behaviors and their lack of ability to effectively communicate with us. It would only take me about 5 minutes to get to my grandmother's house on Cedar Lane. She lived so close to me while I was growing up that I got to see her all the time. Now, I remember her as being a shy and soft-spoken woman. And I truly adored my grandma. Then everything changed when I turned 16. She suddenly went from being sweet and charming to being fearful, anxious, and suspicious of everything. I will never forget. This one particular visit, she told me that birds were living in her mattress and that they would come out at night and peck at her face, that rats by the hundreds were invading her home, and that those people were breaking in to steal her jewelry and eating all of her food. She told me, they're only leaving me scraps of bread to eat. She was absolutely convinced they were there to harm her. Well, little did I know then that this was the beginning of a 20-year journey with Alzheimer's disease for my family, with 7 more of my family members following her. It was also the beginning of my own journey to help others whose lives have been or will be unnerved by it. So come along with me now with an open mind as Alice's new journey into Wonderland begins. And keep in mind that my Alice does live with dementia. So in the same fashion as the original Alice in Wonderland begins, My story also starts off with Alice sitting under a tree, listening to her caregiver reading her a story. However, my Alice didn't recognize this story at all. So she anxiously began looking around out of the corner of her eye, believing that what she was looking at was a huge white rabbit. Dressed in a suit, hurrying by. So she got up and decided to follow him. Now Alice followed the White Rabbit for what seemed to be an eternity, and then right down a rabbit hole she went. Alice found herself in a strange room, realizing how truly lost she was, but she couldn't remember who she was or how to get back to any familiar place. She looked around for a way out when she noticed a strange bottle sitting on top of a table that said, "Drink me." So, you remember in the story, she did. Then she immediately began to shrink. Smaller and smaller she became. But now she realized she'd be able to fit through that little door that she saw the White Rabbit disappear through. Well, she thought, at least now she might be able to find him. He was her only hope of getting back to where she came from. Throughout her search, at times she thought she saw the White Rabbit beckoning her to follow him into the unknown, which gave her the courage to keep on. As she continued her quest to find the rabbit, she suddenly found herself entering a garden of live talking flowers. Those flowers immediately demanded that Alice leave their beautiful garden, insisting that she was a weed out to destroy them. So she skedaddled out of there as fast as she could. Could before she angered them any further, reflecting her own dementia-generated paranoia. This very scene illustrates how individuals with dementia may experience irrational fears and misinterpret their surroundings, leading to anxiety and confusion. Well, soon she came upon a talking caterpillar sitting atop a mushroom, smoking a hookah and blowing smoke rings that formed words she didn't understand. And just like in her dementia, sometimes her memories would also seem to float, just like those smoky words. Only to vanish into thin air when she tried to grasp at them. "Now which way should I go?" Alice thought to herself. Well, at this point in her journey, she was clueless as to which way she should turn. So she continued along the same path, and then out of nowhere, she suddenly heard a voice say, Well, if I were looking for a white rabbit, I'd ask the Mad Hatter. She looked all around, but she saw nothing. She looked up, and sitting high in a tree was an extraordinary-looking cat with a grin on its face that stretched from ear to ear. He went that way, the cat told her, pointing down the path. So she followed in that direction. Then the cat, poof, just disappeared, symbolizing the elusive nature of her own thoughts and recollections. Finally, she came upon that Mad Hatter with his nonsensical riddles, scattered thoughts, and disjointed speech. And there she found the White Rabbit and the March Hare, too. But it wasn't long before she began to feel anxious and wanted to leave that peculiar party. They were all celebrating their unbirthdays. Now she desperately wanted to go home, but nobody at the party seemed to know the right way for her to get there. As a matter of fact, they insisted that she, oh, Retti was home. Next, Alice wandered into the Queen of Hearts' garden. She seemed friendly at first and even invited her to play a friendly game of croquet, but Alice politely declined. Well, this infuriated the Queen. She started yelling, "Off with her head! Off with everyone's head!" Oh no, there she went again, running away as fast as she could, only this time with an army of playing cards in fast pursuit of her. Now, if you all remember, this is the part of the original Alice in Wonderland story where she suddenly wakes up from what turned out to be a dream, but a very frightening dream. She was so relieved to find herself back in the place she started, sitting with her sister, listening to that story, sipping on a warm cup of tea. Now, Alice's experience in my story with the Queen of Hearts illustrates how mood swings, misunderstandings, and misperceptions can occur so innocently and without any warning when you live with dementia. The biggest difference between the real Alice in Wonderland and my Alice, who is living with dementia, is that the real Alice did eventually wake up from what was a terrifying dream. My Alice, the Alice living with dementia, she won't be waking up from a dream because she's not dreaming. This is her new world. It's her new permanent reality. She is now living in a world filled with uncertainty and things that make no sense at all because her mind is no longer able to separate fact from fiction. It's a new world where a person becomes convinced that people are out to harm them, because when you live with dementia, you live with impaired reasoning. And it's a world where a person with dementia can easily become disoriented to place and time and may even believe that they are living in a different timeline of their life. In the past, families of individuals with Alzheimer's disease and related dementia had limited resources and little understanding of this condition. The early coping strategies were often reactive rather than proactive. In the later half of the 20th century, we saw significant advancements in the understanding of dementia. So one of the key principles in modern dementia care is the concept, the methodology of a person-centered approach to dementia care. As our understanding of dementia continues to evolve, the continued emphasis on a person-centered approach to dementia care and the recognition of the emotional and psychological needs of people living with dementia continues to expand, we will continue to strengthen our understanding of the unique world in which they live. However, continued research and education will be crucial in harnessing empathy and in improving the lives of those affected by Alzheimer's disease and related dementia. So this is my story. This is my special presentation. Thank you so much, everybody. For spending part of your day with me, and I hope you enjoyed my version of Alice in Wonderland: Living with Dementia. And as a reminder, please stop by and visit our newly updated website at mindingdementia.com. There's new resources and information that hopefully will be helpful for everybody who is living in this world. I'll be back next week. Have a wonderful rest of your week. Be happy, stay healthy, and I'll see you all next. Bye-bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, But you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.