Navigating Dementia

Carlyn Lenfestey

Navigating Dementia is a weekly podcast for anyone caring for someone with dementia, family and professional caregivers alike. Host Carlyn Lenfestey, a physical therapist and dementia care specialist with 25 years of clinical experience, uses real stories and everyday moments to show that behavior is never the problem. It's always the signal. Each episode teaches one meaningful insight through her Wheel of Function Framework™, delivered like a conversation over coffee, not a lecture. There is always a better way.

  1. 1d ago

    Lewy Body Dementia Symptoms: Sleep Changes, Hallucinations, and Fluctuating Alertness

    What happens when something has clearly changed, but forgetting isn’t the first thing a family notices? With Lewy body dementia, someone may follow a conversation over breakfast and need much more help getting dressed a little later. Add disrupted sleep, changes in movement, or seeing things that aren’t there, and families can be left wondering what’s happening and how to respond. In Episode 12 of Navigating Dementia, Carlyn Lenfestey explores Lewy body dementia through Know the Waters, the first step in The Signal Guide Navigation System™. We follow an imagined morning to understand how the diagnosis can affect everyday life, what support might help, and what to bring up with the healthcare team, even if you’re still seeking a diagnosis. In this episode, we talk about: Why attention and alertness can change throughout the day.How Lewy body dementia can look different from Alzheimer’s disease.Sleep changes, including long stretches awake, daytime sleepiness, and acting out dreams.Why the care partner’s sleep needs to be part of the care conversation too.Responding when someone sees something you don’t see.How stiffness, slower movement, and dizziness can affect daily tasks.Why medication sensitivity matters and sudden changes need medical attention.Preparing for appointments when what happens at home doesn’t show up in the doctor’s office.A question to carry into your week: “What part of the day do we most need help with?” Start with one example. Maybe getting dressed has become harder, sleep is interfering with meals, or you’re awake much of the night. Write down what’s happening and how it’s affecting both of you. You don’t need the right medical words to ask for help. Free Doctor Visit GuideUse this free guide to organize your observations and questions before the next appointment. You don’t need a diagnosis to use it. Download the Doctor Visit Guide Next week, we’ll explore frontotemporal dementia, or FTD, including why changes in behavior, judgment, personality, or language may appear before memory becomes the main concern. Connect with Carlyn FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep12_shownotesWebsite -> https://www.abetterwaydementiacaresolutions.comFacebook -> https://www.facebook.com/profile.php?id=61562478140551Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutionsPinterest -> https://www.pinterest.com/carlyn0832/YouTube -> https://www.youtube.com/@NavigatingDementia If this episode helped you understand a difficult moment, share it with someone who could use that same support. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Lewy Body Dementia Symptoms: Sleep Changes, Hallucinations, and Fluctuating Alertness
  2. Oct 6

    Alzheimer's and Memory Loss: Why They Remember the Past but Forget Today 11

    How can someone with Alzheimer’s remember an old song but forget a conversation from five minutes ago? That difference can be confusing, especially when you’re answering the same question again or trying to help with an appointment they don’t remember discussing. In Episode 11 of Navigating Dementia, Carlyn Lenfestey explores Alzheimer’s disease through Know the Waters, the first step in The Signal Guide Navigation System™. We look at what the diagnosis can tell us about everyday challenges and how to offer support that fits the abilities available right now. In this episode, we talk about: Why familiar songs and older memories may remain accessible when recent information doesn’t.How Alzheimer’s can affect attention, language, judgment, sequencing, and visual-spatial processing.Why making coffee or getting dressed involves more brain work than we realize.Ways to offer information without depending entirely on memory.How to make conversation feel less like a memory test.Why sudden confusion needs immediate medical attention.A question to carry into your week: “How can I make this easier to do with the abilities that are available right now?” Try noticing one moment that asks the person to remember something. Could you offer the information when it’s needed, show the next step, or use a reminder they can understand? Next week, we’ll explore Lewy body dementia, including changes in attention, alertness, movement, and visual experience. Connect with CarlynFREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep11_shownotesWebsite -> https://www.abetterwaydementiacaresolutions.comFacebook -> https://www.facebook.com/profile.php?id=61562478140551Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutionsPinterest -> https://www.pinterest.com/carlyn0832/YouTube -> https://www.youtube.com/@NavigatingDementia If this episode helped you understand a difficult moment, share it with someone who could use that same support. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Alzheimer's and Memory Loss: Why They Remember the Past but Forget Today 11
  3. Sep 28

    Dementia Behaviors: 3 Things to Know Before You Respond

    When something changes in dementia care, it is easy to focus on the part we can see. Someone refuses help, becomes upset, or repeatedly says, “I need to go home.” Our first instinct may be to correct the words or stop the behavior. But before we decide what the signal means or how to respond, we need some context. In this episode, Carlyn introduces the first part of The Signal Guide Navigation System™: Know the Waters. She shares why it helps to look at three things together: the diagnosis, the person, and what is happening in this particular moment. A diagnosis can give us a useful place to start, but it cannot tell us everything about the person in front of us. Their history, routines, roles, preferences, and the conditions around them all shape what they may need. When we widen the frame, we have a better chance of offering support that actually fits. In this episode, we talk about: Why dementia does not look the same in every personWhat a specific diagnosis can help us understandHow to move forward when you do not have a clear diagnosisWhy knowing the person matters just as much as knowing the diseaseHow sleep, noise, timing, routine, and other details can change the momentA different way to respond when someone says, “I need to go home”What is coming next in the Know the Waters mini-seriesHow stages and retrogenesis will fit into future conversationsThe three questions to carry with you What do I know about the diagnosis?What do I know about this person?What is happening in this moment?You will not always have complete answers. This is not a test you have to pass before you can help someone. It is a way to use what you know, notice what you do not know, and stay open to what the person is showing you. Connect with Carlyn FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep10_shownotesWebsite -> https://www.abetterwaydementiacaresolutions.comFacebook -> https://www.facebook.com/profile.php?id=61562478140551Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutionsPinterest -> https://www.pinterest.com/carlyn0832/YouTube -> https://www.youtube.com/@NavigatingDementia DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Dementia Behaviors: 3 Things to Know Before You Respond
  4. Sep 21

    Why Stopping a Dementia Behavior Doesn't Solve the Real Problem

    Before you focus on getting a behavior to stop, ask the question that actually changes things: what is it trying to tell you? In this episode, Carlyn picks up a thread from the woman and the playlist story from last week, then widens it into something bigger. Someone keeps standing up during a meal. You sit them back down, remind them it's time to eat, move the chair in, and a minute later they're up again. If we only look at what we can see, the goal quietly becomes keeping them in the chair. But the standing up might be a full bladder, a sore hip, a too loud room, food they don't recognize, or someone across the room they're trying to follow. The person may not have the words to explain any of that, so their response becomes the explanation instead. The problem was never just about making a behavior stop. Carlyn makes the case that behavior, and its absence, is information, and that safety always comes first when there's real danger, but once that danger has passed, the real work is asking what changed, not just how to make it stop. She also introduces something new: The Signal Guide™ navigation system, six words that sit around the Wheel of Function™ for the moments when a tip doesn't work and you need a way to think it through instead. In This Episode Why "how do I stop this" is the wrong first questionThe lunch table story: a behavior that kept coming backChange is communication, in both directionsIntroducing The Signal Guide™ navigation systemWhat's coming next: knowing the waters you're navigatingConnect with Carlyn FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep9_shownotes Website -> https://www.abetterwaydementiacaresolutions.com Facebook -> https://www.facebook.com/profile.php?id=61562478140551 Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/ LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutions Pinterest -> https://www.pinterest.com/carlyn0832/ YouTube -> https://www.youtube.com/@NavigatingDementia The wheel is only half the picture. Follow the show, because next week we start knowing the waters, the first step in actually using it. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Why Stopping a Dementia Behavior Doesn't Solve the Real Problem
  5. Sep 14

    Why a Busy Room Can Make Dementia Symptoms Look Worse Than They Are.

    Before you decide someone "can't do that anymore," ask the question that actually changes things: did anything change in them, or just around them? In this episode, Carlyn tells the story of a woman in an adult day program whose mornings kept falling apart. The moment staff approached to help her wash and dress, she'd become agitated and shut down, and once that happened, there was no bringing her back into the task. An occupational therapist could have focused on the task itself, a different cue, a different way of laying out the clothes. Instead, she looked at what was happening before the task even started. She found the music this woman loved, built it into a calm, familiar playlist, and had staff turn it on twenty to thirty minutes before they ever approached her. By the time they did, she was calmer, more open, and able to do far more of the washing and dressing herself. That story opens the fifth and final spoke of the Wheel of Function™: the environment. The problem was never just the room, the noise, or the lighting. Carlyn walks through why the same person can feed herself just fine at her kitchen table but struggle in a busy dining room, why a dim bathroom or a dark mat can quietly work against someone, and why a drawer with twelve shirt choices can feel like less independence, not more. She also makes the case that care partners are part of the environment too, our voice, our pace, our touch, even how rushed we feel, and that with all five spokes now on the table, the wheel is finally whole. In This Episode The playlist that changed a woman's whole morningWhy "the environment" means a lot more than the roomEveryday moments where the environment quietly makes things harderYou're part of the environment tooWhat's coming next: behavior as a signalConnect with CarlynFREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep6_shownotesWebsite -> https://www.abetterwaydementiacaresolutions.comFacebook -> https://www.facebook.com/profile.php?id=61562478140551Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutionsPinterest -> https://www.pinterest.com/carlyn0832/YouTube -> https://www.youtube.com/@NavigatingDementia All five spokes of the Wheel of Function™ are on the table now, sensory, emotional, physical, cognitive, and environmental. Follow the show, because next week is where we start putting them to work. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Why a Busy Room Can Make Dementia Symptoms Look Worse Than They Are.
  6. Sep 7

    Dementia and Cognition: Why Everyday Tasks Become Harder

    Before you break another task into five careful steps, ask the question that actually changes things: is breaking it down helping her brain, or asking it to do more? In this episode, Carlyn goes back to a story from the adult day program, a woman who could not get out of her chair. Standing in front of her and walking through it step by step, "scoot forward, bring your feet back, lean forward, push, stand," made her more stuck with every instruction. But walking over, holding out a hand, and saying "come with me" gave her a much better chance of standing. Same woman, same chair, same legs. What changed was the demand on her brain, and that is where this episode opens up the third spoke of the Wheel of Function™: cognition, the spoke Carlyn calls the driver of function. The problem was never just about memory. Cognition is what lets us pay attention long enough to act, understand what is being asked, start a task and stay with it, know what comes next, and notice when something is not working. Carlyn walks through how much of that happens automatically when you get dressed in the morning, and how differently it can look once that process starts to change. Sometimes the shirt can't be found against a bedspread of the same color, that's sensory. Sometimes embarrassment about needing help gets in the way, that's emotion. Sometimes a sore shoulder makes the sleeve painful, that's physical. And sometimes the person can dress beautifully once you hand her the shirt, she just couldn't start on her own, that's cognition. She makes the case for asking "what part is getting in the way?" instead of only "can she do it?", and for changing the task to fit the brain in front of you instead of expecting that brain to adapt to everything around it. In This Episode The chair story, revisited, and what actually changedWhy breaking a task into steps can make it harder, not easierGetting dressed, and everything the brain does without being askedA simple shift: "what part is getting in the way?" instead of "can she do it?"This week's practice: pick one hard moment and get curiousConnect with CarlynFREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep6_shownotesWebsite -> https://www.abetterwaydementiacaresolutions.comFacebook -> https://www.facebook.com/profile.php?id=61562478140551Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutionsPinterest -> https://www.pinterest.com/carlyn0832/YouTube -> https://www.youtube.com/@NavigatingDementia DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Dementia and Cognition: Why Everyday Tasks Become Harder
  7. Aug 31

    Why Physical Function in Dementia Isn't Just About Strength

    Before you decide someone "just can't do this anymore," ask the question that actually changes things: what's different about this moment, not this person? In this episode, Carlyn tells the story of a woman at an adult day program who had the hardest time getting out of a chair. Staff would walk her through it step by step, scoot forward, feet back, lean forward, push, stand, and the more instructions she got, the more stuck she became. But if Carlyn simply held out her hand and said "come with me," she had a much better chance of standing up on her own. Same woman. Same chair. Same legs. What changed wasn't her strength, it was what her brain was being asked to do with the information coming at her. That's the doorway into the third spoke of the Wheel of Function™: physical function, and why it is so much more than a question of "is she strong enough." The problem was never just about the chair, or the six-step instruction, or the sweater that didn't get finished. Carlyn walks through why "he did it this morning" doesn't mean "he can do it tonight," why a couch can be a harder physical task than a dining chair even for the exact same person, why unexplained pain often hides behind "he doesn't want to," and why more help isn't always better help. She makes the case that physical function fluctuates the same way it does in any of us, and that the real question is never "can they or can't they," it's "what do they need to be successful right now." In This Episode The chair everyone assumed was a strength problemThe six-step instruction that got in the wayWhy "he did it this morning" doesn't mean "he can do it tonight"What "how much help is actually helpful" really meansWhat's coming next in the seriesConnect with Carlyn FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep6_shownotes Website -> https://www.abetterwaydementiacaresolutions.com Facebook -> https://www.facebook.com/profile.php?id=61562478140551 Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/ LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutions Pinterest -> https://www.pinterest.com/carlyn0832/ YouTube -> https://www.youtube.com/@NavigatingDementia If this one changed how you'll look at "he can't do this anymore," follow the show so you catch what's next: the cognitive spoke, and the story that's been waiting for it since this episode's opening scene. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Why Physical Function in Dementia Isn't Just About Strength
  8. Aug 24

    Why Dementia Behavior Is Never Just About the Task

    Before you label another moment "just agitation" or "a behavior problem," ask the question that actually changes things: what might this person be feeling right now? In this episode, Carlyn tells the story of a resident in long-term care who kept ending up on the floor, not from a stumble, not from a lost transfer, just a sudden trip to the floor, usually right after a loud noise. No reaching, no sliding, no lost balance, nothing about it looked like a normal fall. The pattern didn't make sense until Carlyn learned what was underneath it: a man with severe PTSD, taking cover from a sound only he could really hear. What started as a mystery about falls became the doorway into the second spoke of the Wheel of Function™: emotional function, and how much of dementia behavior is actually emotion wearing a different name. The problem was never just about the falls, or the anger, or the shower that got refused. Carlyn walks through why a mom might pull away from a shower, why a dad might insist he has to get home to a mother who's been gone for twenty years, and why "leave me alone" might be less about agitation and more about a very human need for control. She traces the shift from asking "how do we stop this behavior" to asking "what might this person be feeling right now," and why that one change opens up entirely different options for care. In This Episode The "falls" that weren't fallsWhat "hit the deck" had to do with itWhy the truth isn't always the kindest thing to sayWhy anger might be about control, not confusionWhat's coming next in the series Connect with Carlyn FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep5_shownotes Website -> https://www.abetterwaydementiacaresolutions.com Facebook -> https://www.facebook.com/profile.php?id=61562478140551 Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/ LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutions Pinterest -> https://www.pinterest.com/carlyn0832/ YouTube -> https://www.youtube.com/@NavigatingDementia If this one hit close to home, follow the show so you catch what's next: another spoke of the Wheel of Function™, and how it connects to everything we covered today. DISCLAIMER The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

    Why Dementia Behavior Is Never Just About the Task

Trailer

5
out of 5
3 Ratings

About

Navigating Dementia is a weekly podcast for anyone caring for someone with dementia, family and professional caregivers alike. Host Carlyn Lenfestey, a physical therapist and dementia care specialist with 25 years of clinical experience, uses real stories and everyday moments to show that behavior is never the problem. It's always the signal. Each episode teaches one meaningful insight through her Wheel of Function Framework™, delivered like a conversation over coffee, not a lecture. There is always a better way.