Understanding Alzheimer's: Breaking the Zombie Stereotype

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.

Hi everybody. Welcome back to another new episode of The Truth Lies in Alzheimer's Show. I'm Lisa Skinner, your host, and I want to start off today's episode with a story, a true story from all the years I've spent working with people living with Alzheimer's disease and dementia. And this is a story that actually is in my book, both the Not All Who Wander Need Be Lost and The Truth Lies in Alzheimer's: Its Secret Faces book. And this story is going to illustrate and drive home a really important point that I want to get across to everybody today. The name of the story is Old Lang Syne, and it starts off: When Julia found Sam curled into a fetal position in his bed at the assisted living facility, he hadn't spoken in a year. She had just opened a new memory care section at the facility where Sam was living. She was looking for residents who might do well in a more structured environment. She had read Sam's file, spoken to his caregivers, and had a hunch that there was possibly more life in him than they had given him credit for. Sam had been at the assisted living facility for a few years. Without any family or friends to visit him, he had begun to withdraw and spent most of his time in his room. Staff misinterpreted his decreased social engagement for a decline in his health. They started bringing him all of his meals in bed and didn't encourage him to socialize at all. Shortly after that, he completely stopped talking. I feel like Sam could vastly improve in a new environment. I think he might be a good candidate for my program, Julia said. Julia's strategically planned program kept residents engaged in activities based on their interests. Knowing that Sam, a World War II veteran, had been a singer during the war, she encouraged him to go to piano concerts held at the facility each week. Just as Julia believed it would, Sam's condition vastly improved. Several months into his stay, Julia heard a story from a staff member that would melt her heart and confirm her choice of bringing him into the memory care environment. The employee reported that Sam had been quietly sitting in the audience listening to the concert. On this day, during a particularly spirited singing of the classic Auld Lang Syne, Sam stood up, leaned against his chair, and in sync with the other participants belted out the words to the chorus: Should auld acquaintance be forgot, and never brought to mind? Should auld acquaintance be forgot, and "Aulang Zain." A couple days later, Sam walked into Julia's office and sat down in front of her desk. "Don't you look like the picture of perfect health," Julia said. Sam responded, "I like it here." Sam's health continued to get better, and he became more and more social with staff and with the other residents. Julia cried as she told me Sam's story. And I have personally retold it countless times as an example of how all dementia care facilities are not created equal and why environment matters and the person-centered approach to care is critical. So further thoughts about this. In Sam's story, I want everybody to understand that it's important to remember what caused the changes in his ability to communicate. I don't want to offer false hope that Alzheimer's and dementia-related illnesses are reversible. They are not. On the contrary, they are progressive degenerative disorders that do worsen over time. However, Sam's initial caregivers mistook his decreased social engagement for the decline in his cognitive health, and this caused him to spiral further into social isolation. The resurgence of his communication skills can be attributed to the new memory care program, which employed well-trained staff and utilized activities that tapped into Sam's basic need to feel like he belonged. In this case, hearing this, this song, "Auld Lang Syne," triggered distant past memories for him and just brought him alive. The right treatment and environment can provide a sense of purpose and belonging, as we see with Sam. A big part of the solution is in identifying activities that the person enjoyed during their prime years and then helping them engage in those activities, which absolutely does wonders for their self-esteem and provides much-needed sensory stimulation. So proof that a well-coordinated program that incorporates these elements can decrease challenging behaviors and most importantly, fulfill the individual's need to feel like they're living a meaningful life. And again, this was a true story that I personally witnessed at one of the facilities that I worked at once upon a time. Now, over the 30 years that I have been working with families and people living with dementia, I I too have heard many people say that people who live with dementia end up like zombies, just like Sam appeared to be in our story, "Auld Lang Syne." However, that statement that people with dementia end up like zombies couldn't be farther from the truth. Or even fair to say. People with dementia are individuals with unique personalities, emotions, and experiences. While dementia can cause significant cognitive decline and behavioral changes, it is essential to remember that those living with dementia are still human beings deserving of respect, dignity, and compassion. So what does that tell us? That it's crucial to avoid stigmatizing language and stereotypes that dehumanize individuals with dementia. People with dementia may experience memory loss, confusion, communication difficulties, and like Sam, changes in behavior, but also like Sam, It turns out they do have feelings, emotions, and the capacity to experience joy, connection, and quality of life. So how can caregivers provide enhanced and meaningful lives for them? Because caregivers do play a crucial role in supporting individuals living with dementia. So it's gotta be a partnership, a team effort. And here are some ways to do that. By encouraging engagement in meaningful activities. What does that look like? Encourage the person with dementia to participate in activities they enjoy and find meaningful. This could include listening to music, engaging in art or craft activities, gardening, or simply reminiscing about past experiences. Don't forget to always focus on communication and connection. You can do this by maintaining open communication with the person with dementia through verbal and nonverbal means. Use simple language, maintain eye contact, and express empathy and understanding. Engage in activities that promote social interaction and connection with others. We saw during COVID how the lack of social interaction definitely sped up the progression of their cognitive decline. This is a fact. You can also support their physical well-being by encouraging regular physical exercise. Healthy eating choices, and adequate rest to support the overall well-being of the person with dementia. Physical activity can help improve their moods, help improve their sleep, and their overall health. You could also provide opportunities for cognitive stimulation by engaging the person with dementia in activities that stimulate cognitive function like puzzles or memory games, reading, or learning new skills. Cognitive stimulation can help maintain mental function and slow the, their cognitive decline. Offer sensory stimulation. And how do you do this? By using sensory stimuli such as music, touch, aromatherapy, and visual cues. This will help engage the person with dementia and evoke positive memories and emotions. Always respect their individual preferences and abilities. You can do this by recognizing the unique preferences, abilities, and limitations of the person living with Alzheimer's disease and related dementia. So you want to then tailor the activities and into interactions to their individual needs and capabilities. It's helpful to seek support and respite. Caregiving for someone with dementia can be so challenging and emotionally demanding, as I'm sure you all are well aware of. It's essential for caregivers to seek support from healthcare professionals, by joining support groups and also looking into respite care services to help manage stress and to prevent burnout. And then also, don't forget to practice your own self-care. Caregivers must prioritize their own well-being to provide the best care for their loved ones. So take breaks. Engage in activities that bring you joy and seek emotional support when needed. By implementing these strategies and approaches, caregivers can help individuals with dementia lead more enriched, meaningful, and fulfilling lives despite the challenges that are posed by the condition. And here are some more specific examples of activities and strategies that caregivers can use to provide enhanced and meaningful experience for individuals with dementia. This one we've talked about, but I'm just going to drive it home and emphasize music therapy. Music can have a powerful impact on individuals with dementia. We saw that in Sam. Caregivers can create personalized playlists of familiar songs that the person with dementia enjoys and use music to invoke memories, boost moods, and encourage engagement. You can do art and creative activities by engaging the person with dementia in art projects such as painting, drawing, or crafting. Art therapy can provide a creative outlet stimulate cognitive function, and promote self-expression. And I just wanna emphasize, it doesn't matter how the project turns out because they will remember the feeling that doing the project gave them, feeling useful and purposeful, and that they have meaning again. They'll probably forget all about the project, but they won't forget for a long time how it made them feel. Then there's reminiscence therapy. Reminiscence therapy will encourage the person with dementia to reminisce about past experiences, to help them share their stories. And you can do this by looking at old photographs or keepsakes. Reminiscence therapy can help foster a sense of their identity. Their connection to the world, and validation. You can take them on a nature walk and engage in outdoor activities. Take the person with Alzheimer's disease and dementia for short walks in nature. Visit a park. Engage in gentle outdoor activities. And nature, as we know, can have a calming and therapeutic effect, which will provide sensory stimulation and also opportunities for physical exercise. Pet therapy can be wonderful. We've seen interactions with animals can be incredibly beneficial for individuals living with dementia. And if appropriate, consider incorporating pet therapy into the care routine By introducing a therapy animal or allowing visits from friendly pets. There are also sensory activities that you can implement by creating sensory stations with items of different textures, scents, and colors for the person living with Alzheimer's disease and dementia. They can explore and engage with them. Sensory activities can help stimulate the senses, which in turn will evoke memories and also promote relaxation. You can cook and bake together. Involve the person with dementia in simple cooking or baking activities that they can enjoy. This is where their life history might really come in to play by knowing What foods they like, what might remind them of the holidays. And this can also provide a sense of accomplishment, engage their senses, and create opportunities for social interactions and, of course, reminiscence. Some people enjoy gardening. Encourage the person with dementia to participate in gardening activities such as planting flowers and seeds and things like that. And lastly, we have mindfulness and relaxation techniques. You can accomplish this by practicing gentle yoga, meditation, or deep breathing exercises for the person or people living with dementia. This in turn promotes relaxation. It reduces stress and enhances overall well-being. A few more things that can stimulate memories: the use of memory books or memory boxes. And, um, you can accomplish this by creating memory books or boxes that will that are filled with photos, keepsakes, and mementos that hold personal significance for the individual with dementia. Looking through these items can help trigger memories and spark conversations about past experiences. More sensory stimulation. Engage the senses through activities such as aromatherapy, Tactile stimulation. Examples of this would be textured objects and soft fabrics. Listening to familiar sounds like birds chirping or nature sounds and tasting different foods or beverages. Sensory stimulation does evoke memories and create a multisensory experience for people living with dementia. Life story work. Work with the person with dementia to create a life story book or timeline that documents significant events, milestones, and memories from their life. This process can help preserve personal history, promote reminiscence, and strength and sense of identity. And if they've progressed to the stage where they really can't help you with this information. Maybe you can defer to family members and have them tell you milestones and stories from their healthier years. Structured reminiscence activities. Use structured reminiscence activities such as memory games, conversation starters based on specific themes or time periods. Tell me about your wedding. I'd love to hear about the day you and John were married. Or guided reminiscence exercises to encourage the person with dementia to share their memories and stories. You can also try multi-sensory storytelling. What does that look like? Engaging in multi-sensory sensory storytelling by incorporating elements such as music, scents, textures, and visual aids into storytelling sessions. Using a variety of sensory cues can enhance the storytelling experience and trigger memories for the person living with dementia. Engaging in familiar activities. Encourage them to engage in activities that were once meaningful to them, such as cooking a favorite recipe, playing a musical instrument, or participating in a hobby that you know they once enjoyed. Engaging in familiar activities evokes memories and provides a sense of comfort and accomplishment. And then there are the environmental cues. Use environmental cues such as familiar objects, photographs, or decorations in the living space, which can create a sense of continuity and trigger memories. These cues can serve as anchors to the past and help the person with dementia feel more connected to their personal history. So I just want to emphasize that knowing and understanding the life history of an individual with dementia can be and is incredibly valuable for caregivers and family members and can significantly enhance the quality of care and the quality of their interactions with you. Here are some reasons why knowing their life history is so important. Because it promotes meaningful connections. Understanding the person's life history, including their background, their experiences, what their values are, and their preferences, can help caregivers build meaningful connections with people living with dementia. By knowing their personal stories and interests, caregivers can tailor activities and interactions to better engage the individual and foster a sense of familiarity and comfort. Knowing their life history has been found to reduce anxiety and agitation. Familiarity and routine can help reduce anxiety and agitation in individuals with dementia. Understanding their life history allows caregivers to create a supportive environment that to the person with dementia feels safe and comforting and familiar. And these things can help minimize distress and challenging behaviors that we see with these diseases. It helps promote reminiscence and validation. Reminiscing about past experiences can be a therapeutic and validating activity for people living with Alzheimer's disease and dementia. But you gotta know their life history because this is gonna enable caregivers to engage in reminiscence activities that evokes memories, sparks conversations, and promotes a sense of continuity and connection to their past. And then finally, facilitating— what I practice is person-centered care. Person-centered care focuses on the individual's preferences, their needs, and their values. Knowledge of the person's life history is essential for providing person-centered care that honors their autonomy, respects their individuality, and promotes their well-being and quality of life. So caregivers out there, if you can gather information about the person you're caring for and family members, life history through conversations with family members, other family members, reviewing photo albums and mementos, talking to the individuals themselves. Let them tell their stories. And consulting with healthcare providers or other caregivers. By taking the time to learn about the person's life history and integrating this knowledge into their care approach, caregivers can create a more supportive, empathetic, and enriching environment for individuals living with Alzheimer's disease and related dementia. In the 30 years that I have been working in this industry, I have seen miracles happen just by incorporating these principles and these approaches and techniques into the lives of people living with Alzheimer's disease. So I hope this information has been helpful for you today, that you'll take some of the things that I've shared with you and implement them into your world of people living with Alzheimer's disease and related dementia, and hopefully also witness some miracles coming out of that. Thank you again for joining me here today on the Truth Lies and Alzheimer's Show. I'm Lisa Skinner, your host, and I will be bringing you another new episode of The Truth Lies in Alzheimer's Show next week, and I hope you'll join me next week and every week for more fascinating and really helpful, interesting information on how to live your best life with Alzheimer's disease and dementia. Take care for now, and I'll see you back here next week.

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 each 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.