25 May 2023 · 30 min
In this episode of the Truth, Lies & Alzheimer's Show, host Lisa Skinner expands on her person‑centered care framework by introducing “life skills stations,” structured environments that recreate familiar past activities to meet the unmet needs of people living with dementia. She illustrates the concept with a detailed case study from her book, “The Changing Station,” describing how a baby‑themed station transformed a resident named Martha, whose frequent, frightening screams ceased once her maternal instincts were engaged. Skinner then offers concrete caregiving guidance: selecting activities aligned with a resident’s life history, focusing on enjoyment over achievement, and employing the “5 W’s” (who, what, where, when, why) to assess and de‑escalate challenging behaviors. The segment concludes with a “What’s New?” news brief highlighting recent genetic research on a Colombian family carrying a pathogenic PFEN1 mutation that was dramatically delayed by a protective REL (reelin) mutation, underscoring the distinction between amyloid plaque presence and tau pathology, and linking these findings to earlier observations from the Nun Study and a Florida cohort. The episode ends with announcements and contact information for listeners.
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This is the Truth, 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 to educate, enlighten, and entertain. I'm Ken Palya, but much more importantly, I'm here to introduce our host, Alzheimer's and dementia expert, bestselling author, and world-renowned public speaker, Lisa Skinner. We've got a fantastic episode planned for you today. Lisa will be continuing her discussion of the person-centered approaches to care, and she'll be discussing life skills stations. Life Skills Stations. Lisa will read a real-life situational story from her book, Truth, Lies Alzheimer's: Its Secret Faces, and in that story she will demonstrate and point out use of a Life Skills Station. Lisa will also be debuting a new segment on our show, which I'm very excited for. It's called What's New?, and Lisa will be sharing a very, very relevant story in the recent news cycle. And with that, I'm very happy to turn it over to our host, Lisa Skinner.
Thanks so much, Ken, as always. Hello to all of you who have tuned in to listen to this episode of the Truth, Lies Alzheimer's Show. Of course, I'm Lisa Skinner, your host. And I would like to shout out a very warm welcome to all of you who have joined us today. Thank you so much for being here. And I actually have some really exciting news to share with you. I just found out a couple days ago that our listenership is growing by leaps and bounds. You know, we're a fairly new show, and I got— I saw some statistics the other day that tells me that every week our audience is growing bigger and bigger and bigger. And people are listening from countries all over the world. So you know what that tells me? It tells me that you must be finding some true value in the information that I'm bringing to you every week. I am thrilled at this news, so let's keep it going. I couldn't be more excited because, you know, the purpose of this show is to talk about every aspect of Alzheimer's disease and its related dementia, and of course that includes the good, the bad, and the ugly. Our goal is to get to the truth dispel the lies and myths, and unveil what I call the secret faces of Alzheimer's disease. That way you'll be able to understand what it's truly like to live with these brain diseases. My hope is always to zoom outside the paradigm of this exclusively being a memory loss condition and to shift people's understanding of just how dramatically this disease impacts the lives of those who have it, as well as the caregivers, the family members— well, for that matter, anybody who is involved in the life of a person living with dementia. And as Ken mentioned, I am going to continue my segment on a person-centered approach to care which we've done for the last 2 episodes, but tonight I'm going— or today I'm going to talk to you about what's called life skills stations. And I'm going to read to you a real-life story from my book so you can see how it was put into action. Knowledge is power, and I'm here to arm you with that knowledge. Only then will you be able to be prepared for what will challenge you, and that's going to be the key to being prepared and not being caught off guard during your journey with this disease. Life skills stations are set up in order to recreate familiar situations for a person living with dementia. When their short-term memory has shut off, which it does just unexpectedly, they go back to a time from their past. Where they land is different for everybody. They pick a time period from their past lives and they land there. So, you have to listen for the cues to know kind of what period timeframe they are living in at the moment. So, providing them with a setting from that past will enable them to feel secure about their surroundings and provide them with an environment that resembles where they believe they should be, like in a garden gardening, doing laundry in their home because they were a homemaker, maybe a work— a bench or a desk with a typewriter for someone who worked as a secretary, or perhaps a nursery because they're looking for their baby or their children. People can then become socially engaged in these familiar settings that can sustain their memories as well as provide them with cognitive experiences and physical movement while providing a much-needed sense of pride, accomplishment, fulfillment, and purpose. So, when you're setting up a life skills station, keep these things in mind. Keep the person's skills and abilities at the forefront of your mind. Stick with activities that a person enjoyed in their younger years, and then you can adjust them to match the person's current level of ability. Find activities that focus on enjoyment, not on achievement, by finding activities that build on remaining skills and talents. Encourage involvement in daily life by offering a life skills station that will help an individual feel like a valued part of the household, like Setting the table. This can provide a huge sense of success and accomplishment. One thing I want to mention is when you approach somebody to maybe ask them to set the table, approach it like this: Hey, Mom, can you help me with something? I was hoping maybe you could set the table for dinner for us. Instead of just kind of demanding that they do it. Can you help me with this? So relate activities that you choose to their work life. For example, a former office worker might enjoy activities that involve organizing, like putting coins in a holder, helping to assemble a mailing or making a to-do list or grocery list. Looking for favorites. The person who always enjoyed drinking coffee and reading the newspaper may still find these activities enjoyable, even if he or she is not able to completely understand what the newspaper says. These are all examples of person-centered activities. So knowing the life history of each person is why it's so important. In being able to provide life skill opportunities that are meaningful to them as individuals. Also, knowing your loved one's likes and dislikes will come in very handy when offering a variety of accessories to them. I'm going to read to you now the story that I call The Changing Station. Dementia, once it's been officially diagnosed, as you know, does not go away. It's like that proverbial elephant in the room. It's bigger than life and it stays right in your face. The symptoms of dementia do come and go and the condition can manifest itself differently with each person as well as progress at different rates of speed. Trying to stay true to your loved one and always tell the truth by implementing therapeutic lying into the management of the daily symptoms and behaviors is very difficult because it's not what we were taught to do. However, we have learned through trial and error that Always engaging in the truth to someone with Alzheimer's disease might seem cruel and wrong in our minds, but in many situations with dementia, the truth may actually have serious and harmful consequences that you might not realize you would be causing. I remember one of the residents who lived in the memory care unit where I worked in Washington, D.C. I'll call her Martha. She would constantly, without cause or notice, let out these blood-curdling screams. They were so alarming that I dreaded giving family tours of the memory care neighborhood. Hearing her screams were concerning, but I did know that Martha was safe, although it just didn't sound that way. I was really afraid of what families would think was going on if they were to hear these screams. If it happened, I would always try to reassure them that this was not an uncommon behavior of someone living with Alzheimer's disease, but I couldn't help but wonder if they even believed me. The truth of the matter was, is that we really didn't know why Martha screamed. She was physically healthy aside from her Alzheimer's diagnosis, and we believed that she was trying to communicate something to us. We just didn't know what that something was. During that period of time, I had been engaged in a training program on new evidence-based behavior modification strategies. An emerging approach was the placement of life skill stations in these memory care units. Life skill stations are areas set up that are adorned with props for residents to engage in with the goal to keep their brains engaged by triggering positive memories from their past to ultimately keep them connected with their lives. Many of the residents who lived in our memory care unit had been homemakers in the prime period of their adult lives, and so their main role was to raise their children. So I decided to set up a life skills station that contained a crib, a bassinet, a diaper-changing table, and a baby girl doll with several additional outfits. Well, about a week after setting up the life skills station, I noticed that I hadn't heard Martha scream in a while. I asked one of the caregivers about it, and she told me that ever since I set that station up with the baby and all of the baby paraphernalia, that Martha was now a completely different person. She told me that Martha found the baby and had adopted her as her own. And never let that baby out of her sight. She actually tucked it into the basket on her walker in a blanket and took it everywhere with her. And you know what? She hadn't screamed since. She's so much more relaxed now and seems very happy caring for that baby. So often we talk about Alzheimer's disease, we focus on the effect it has on family members. Slowly losing our loved ones to brain disease is one of the hardest things, as you know, that any of us will ever face. But we tend to speak as if our loved one is already gone, as if there is no longer a person inside that body who is still aware of their surroundings. I'm here to tell you this is just Not true. And Alzheimer's disease is often a double whammy for the afflicted. Not only do they lose their ability to make sense of their world, but they also lose the ability to articulate their needs, like you heard in Martha's story. Combined with a changing and confusing environment, it makes sense that a person with Alzheimer's disease would act out. Which in Martha's case manifested as a horrible, frightening, blood-curdling scream. Martha was reacting to a new and uncertain environment in which she no longer understood what her role was supposed to be. She had always identified with being a caregiver to her children. And then as her short-term memory diminished and she believed she was still a mother to those children, she undoubtedly was constantly looking for them, and her screams were actually her way of letting us know that there was something seriously wrong. The life skills station not only satiated Martha's need to nurture her maternal instincts, but it brought her relief and calm to have found her baby again. This obviously helped her transition to her new station in life, that of an Alzheimer's resident who could let herself be cared for by a caring staff. So, the changing station is a prime example of someone whose challenging behaviors were an attempt to communicate a need. Your loved one may exhibit a different different challenging behavior. For example, some people who suffer from Alzheimer's disease or related dementia can become combative while taking a shower. Well, this comes from the lack of ability to do what we call task sequence, or follow the steps from the start of a task to the completion of the task. The person suffering from brain disease might believe that the shower is finished before it really is, and therefore attempts to communicate this belief to you by trying to stop you from finishing the shower. Now, for Martha, she was trying to communicate a deep-seated need to be maternal by yelling out. Well, this is very different from someone whose brain prevents them from recognizing a correct task sequence. However, the similarity is that the individual suffering from the disease still perceives a need. This does not have to make sense or be rooted in reality. The lesson we can learn from Martha is that sometimes it takes creative troubleshooting to identify an activity that will perform fill the need, thus allowing the challenging behavior to subside. Try getting your loved one involved in an activity that will help them feel purposeful. This is so important. And make sure they are always safe. Your loved one's speaking ability may be impaired, so they won't be able to tell you if the activity is working for them, but you can read their nonverbal cues and identify activities that visibly put them at By experimenting with a variety of activities that they will naturally enjoy, you can often put your loved one's challenging behaviors to rest. This is where knowing what they enjoyed doing earlier in their life will come in very handy. And this is all part of a person-centered approach to care. Now, screaming is not an uncommon occurrence in people with Alzheimer's disease and related dementia at any stage. However, it does remain a mystery as to why this behavior happens other than knowing that they are trying to communicate something to us. So, we will explore several ways to identify and then fulfill a need that may exist in a person who cannot tell you what that need may be. So, I want to share with you some of the things a caregiver can do to help assess the situation that may have triggered the screaming is to evaluate what's called the 5 W's. The first one is who. Who was the person? Or was there somebody absent? When the screaming started. Number 2 is the what. What helps or makes it worse and/or accompanies the behavior? Number 3 is where. Where did this behavior occur? For example, was there a particular event associated with it? Number 4 is when. So take a look at when did it occur. Was it a specific time, like did it occur before bedtime? Were they resisting bedtime? Were they resisting bath time? Was it daytime or evening time? And then number 5 is why. Why did this behavior occur? So you gotta consider physical or environmental reasons for the behavior. And what are they trying to tell you? You may not always be able to determine the reason or the cause, but this process of eliminating possibilities can be extremely helpful and might also alert you to things to look for in the future. Now, I'm going to talk about triggers and best practice reactions and responses in detail starting with our next segment. Which will be our next episode in a week. Now, because dementia causes confusion and disorientation, which can elicit deep feelings of loneliness or anxiety, you can perhaps interpret the behaviors as a call for help. So, in what's news today, I want to talk to you about this article that I read written by Ellen Matloff, and she tells us that a man carrying a genetic mutation known to cause early onset Alzheimer's disease postponed development of dementia until age 72. Now, The reason why this is important is because they found that his story may hold clues for researchers developing drugs to treat Alzheimer's and other diseases. Now, the patient in this story was part of a large Colombian family with a heredity Alzheimer's disease that generously allowed a joint team of researchers including investigators from the University of Antioquia and Columbia Massachusetts General Hospital and the Scheppens Eye Research Institute of Massachusetts Eye and Ear to study their 1,200-person kindred with genetic testing, brain imaging, and thorough examination of their brain tissues after death. And this is according to the Journal of Medicine. Now, this patient in question carried a mutation in a gene called PFEN1. Now, this gene is known to cause mild cognitive impairment by a median age of 44 years old, and then full-blown dementia by 49 years old.. But in this case, this patient was cognitively intact until age 67 and did not develop mild cognitive impairment until he was 70 years old and then mild dementia when he was 72. So it postponed the onset of the early onset dementia. Now, the answer— the answer to why this man was able to stay he was able to stave off the disease for so long was found at least in part in his genes. Now, this is where it gets really interesting, and I've read other studies on this before. In addition to the mutation that causes Alzheimer's disease, this man also carried a newly described mutation in the REL gene. Called reelin kolbos. Now, this gene appears to provide protection from Alzheimer's disease. Now, his sister, who had the same hereditary risk, was found to have a mutation in a different protective gene. She avoided cognitive decline until age 58, and dementia until 61. So she was actually much younger. It is well known that patients with Alzheimer's disease have a buildup of proteins called amyloid in their brains. It has been thought that groups of amyloid proteins called plaques cause the disease, and many drugs for Alzheimer's have targeted amyloid. But in this case, it revealed that both brother and sister had high levels of amyloid plaques in their brains and yet were not exhibiting signs of cognitive decline or dementia. So examining how the protective mutation operates gives us new insights into what may cause Alzheimer's disease. The protective mutation plugs into a receptor in the of the brain, diminishing the activation of a protein called tau, which are the plaques and the tangles that we know cause— are known to cause Alzheimer's disease. So imaging of this man's brain showed that although he did have a lot of amyloid plaques, he had very few few of the tau tangles in a region of the brain called the entorhinal cortex. If a mutation in another gene called APOE, and I have talked about that one before, plugs into that receptor instead, it increases tau activation, speeding up the development of those tangles and cognitive decline. So I would say that this discovery certainly explains one of the studies that I read about years and years ago called the Nun Study, which studied a group of nuns and then followed them for decades from one age till after death, and they did an autopsy on the brain. And the thing that was interesting about this— is they found plaque and tangles that were apparent in the brains of the deceased victims who had never displayed any signs or symptoms of Alzheimer's disease, but they did have the plaque and tangles. And conversely, people who did display signs of Alzheimer's disease, upon autopsy they didn't contain hardly any or any plaques and tangles. This discovery may explain. And then later on there was another study done on a group of retired residents in Florida, and they found the exact same thing to be true. So this really is a step forward for really trying to nail down why some people develop Alzheimer's disease even though they do have plaques and tangles in their brain and why others don't. So, I hope you found this information helpful again, and we will keep it going next week. So, um— I'm going to— before I close, I'm going to turn the mic back over to Ken to make a few announcements for you, and I'll be right back.
Thank you for listening to the Truth, Lies Alzheimer's show with your host Lisa Skinner. This program can be found on our website at passionateworldtalkradio.com under the shows tab. You can also search for us on YouTube. If you're on Facebook, search for Lisa under Lisa Skinner Author. And if you're interested in Lisa's books, including the one she read a story from today, you can go to truthliesalzheimers.com. And with that, Lisa, take us out.
Ah, thanks, Ken. I want to thank you all for being here again today. I'm so excited that you're out there listening to what I have to share with you to help you through this very, very difficult journey. Remember, as I like to say, dementia awareness is every day, and kindness is the ability to speak with love, listen with compassion, and act with patience. And as you know, these are all very necessary attributes to have in order to outlive last Alzheimer's disease. And one last note, if you have any comments for me or suggestions on what topics you'd like me to cover on this weekly show, you can send them to me at dementiawhisperer1@gmail.com. Also, if you're listening to this on YouTube or if you got here through our social media page, which is on Facebook called Lisa Skinner Author. Please leave your comments or questions and I promise I'll do my best to address them. I genuinely look forward to receiving your thoughts and ideas and in the meantime, take care of you. Talk to you next week.
