Effective Partnering In Dementia Care: Reframing Behaviors

Editor's note: This text-based course is a transcript of the webinar, Effective Partnering in Dementia Care: Reframing Behaviors, presented by Laurie Walther, MS, CCC-SLP, Certified Dementia Trainer.

Please also use the handout with this text course to supplement the material.

Learning Outcomes

After this course, participants will be able to:

• Analyze 4 potential reasons for the "why" behind the behavior.
• Analyze 3 ways to support the person living with dementia in their environment to maximize ADL performance and meaningful occupation.
• Differentiate between the roles of a caregiver and a care partner and explain how this distinction can influence outcomes in effective dementia care partnerships.
• Identify evidence-based principles for interacting with individuals with dementia within an interprofessional team to support treatment across care settings.

Introduction

I'm excited to be back with you, and we're going to jump right in with Effective Partnering in Dementia Care: Reframing Behaviors. I have a ton of information to share in a little bit of time, so fair warning, I talk pretty fast. I also want these sessions to be interactive. Throughout this course, I'm going to ask you to pause and think to yourselves about what we're covering and how it applies to the people you support, because the goal by the end of this course is for you to reframe how you think about the "why" behind the behavior so you can adjust your approach accordingly.

Let's start with a question I want you to sit with. Share, in your own experience, some of the behaviors you've encountered while working with a person living with dementia. If you've worked in this space, you already know the list: agitation, sundowning, anxiety, memory loss, irritability, biting, wandering, confusion, reverting to younger ways, fear, refusing care. Here are some of the major categories we tend to group these under: refusing, depression and withdrawal, anxiety, wandering, repetition, suspicion, aggression, sexually inappropriate behavior, "shopping," and hallucinations.

But here's the catch, and it's the whole premise of this course: we have to be careful about the language and the labels we use. One of the more challenging aspects of caring for a person living with dementia is navigating daily interactions during difficult moments. They may refuse care, follow you around, get angry or anxious for no apparent reason, or become frustrated over something entirely outside their control. Many of us default to calling these "behaviors." By the end of this course, I want us to reframe our thinking about the why behind the behavior so we can adjust accordingly, because remember, the person living with dementia isn't able to do that reframing themselves. Is there something happening in their environment? Is this a form of communication? Is this a way of expressing a want or a need? Has there been a change in health status? Did we do something, even unintentionally, to trigger this? The possibilities are genuinely endless.

When someone we care about is diagnosed with Alzheimer's disease or another dementia, it results in changes for everyone involved. It takes time to accept both the diagnosis and the changes that follow, and both the care partner and the person living with dementia (PLwD) are impacted. Our society, whether we intend it or not, carries misperceptions about this diagnosis, and that comes with an associated stigma. This can lead to misinterpretations of situations that unfold in daily care. There is no one-size-fits-all approach here; every person's journey is different. Sometimes people don't even notice that the changes and challenges they're seeing are related to dementia symptoms, because these changes can begin long before an actual diagnosis is made.

According to the Alzheimer's Association, the main cause of behavioral symptoms in Alzheimer's disease and other progressive dementias is the deterioration of brain cells, which causes a decline in the individual's ability to make sense of the world around them. Environmental influences can also cause symptoms or worsen them. Because people with Alzheimer's gradually lose the ability to communicate, it's important to regularly monitor their comfort and anticipate their needs (Alzheimer's Association, 2023).

Understanding Brain Change

There is nothing about brain change or dementia that is simple. Dementia changes a person's brain, and that change cascades into so many other things. Remember, the brain itself is shrinking, atrophying, and by the later stages, it will be roughly one-third of its original size. We see change everywhere as a result. One is sensory change: our visual, auditory, tactile, olfactory, and taste senses will all shift throughout the journey. Motor movement changes. And what we tend to call "behavior" changes, too. Ultimately, care partners need to pay close attention to the details, be willing to try and fail, and be willing to gain new skills along the way.

So here are some tips to understand brain change. First, notice the small changes: a lack of interest in activities they used to enjoy, or reckless behavior toward something they previously handled with ease. You may start to notice that their words and actions are no longer consistent with how they previously acted. Second, pay close attention to your own changes and responses. Actions on our part that seem like nothing important or noteworthy can actually be affecting the situation and making it worse, without us even realizing it, because they are going to match what we're doing. Third, try different things. A person experiencing brain change may have lost some skills, but it's still important to try different ideas and activities to determine what actually works for them. And finally, learn about effective communication strategies that will support the person as brain change continues, because the more we understand, the better we can support them.

Reframing Caregiver to Care Partner

The next section might feel a little familiar, but it carries important messaging. Terms for supportive personnel are typically "caretaker" or "caregiver." I want us to reframe this to a care partnership, because when we partner with someone, we are invested, collaborate, and are in a relationship with them. As a result, the care we provide is different. We are in a "we are in this together" mindset to improve quality outcomes and care.

Providing care to someone living with dementia may get a job done, but it fails to see the person as a whole person. We should focus on providing care *with* those living with dementia. This may seem like a small word shift, but it's an important distinction that considers the values and preferences of the person we are caring for. We must get their permission to provide care that is dignified, respectful, and grounded in a relationship.

Behavioral and Psychological Symptoms of Dementia (BPSD)

Let's talk about BPSD, Behavioral and Psychological Symptoms of Dementia. BPSD is a group of non-cognitive symptoms that tend to get described as "behaviors," occurring alongside cognitive and functional decline. Up to 90% of people living with dementia will experience BPSD at some point, and these symptoms contribute to approximately 30% of overall dementia care costs. BPSD is considered part of the disease progression, not something separate and isolated from it, and it can cause significant distress to both the person living with dementia and their care partners.

Let's look at the factors that influence BPSD. First, unmet needs. This is an endless list of possibilities, and I'll break these down further into physical, emotional, environmental, and communication needs in just a moment. Second, environmental factors, including safety issues, lack of activity, and over- or understimulation. Third, care partner factors: stress, going in with an agenda, communication difficulties, not matching our approach to the person's ability level, and learned feedback, meaning we might actually be the ones positively reinforcing an unwanted action without realizing it. Symptom severity increases over time and correlates with institutional placement.

As a reminder, there are over 120 different types of dementia, and among these types, BPSD symptoms can differ. This is another reason it's so important to know what type of dementia we're working with, because symptom presentation and treatment approaches can vary. What looks like "aggression" in one type of dementia may present as withdrawal in another, and what calms one person may agitate someone whose dementia stems from a different underlying pathology. This is exactly why we can't treat "dementia" as a single, uniform diagnosis, or why a strategy that worked beautifully for one resident won't automatically transfer to the next.

I also want you to notice how these four categories interact with one another, because they rarely operate in isolation. An environmental factor, say, a noisy dining room, can create an unmet need for quiet and predictability. A care partner factor, walking in with our own agenda and moving too fast, can turn a manageable moment into an escalated one. And learned feedback means we have to be honest with ourselves: if a person learns that a certain behavior reliably gets them out of an unwanted task, or reliably gets them attention, we may be unintentionally reinforcing the very pattern we're trying to reduce. None of this is about blame. It's about recognizing that we, as care partners, are part of the equation, not just observers.

Additional Considerations: Pain, PTSD, Delirium, and Sundowning

Pain is not adequately assessed in persons living with dementia. According to the literature, 46% to 56% of patients with dementia experience the presence of pain, but only 20% to 40% of them receive analgesics, compared to 60% to 80% of persons without dementia who experience pain. But here's the flip side: we also have to be careful that we're not using "they might be in pain" as an excuse to simply sedate someone.

PTSD is another consideration. Strong emotions tied to traumatic events, war, physical or sexual abuse, abduction, and family history and dynamics can all play a role in how a person responds to care. Intimate care, in particular, is something we have to be aware of as a potential trigger.

Delirium has a more abrupt onset than BPSD, showing up over one to two weeks rather than weeks to months, and delirium can resolve if the underlying problem, say, a UTI, pain, or constipation, is corrected.

And then we have sundowning. But isn't this what we all experience every day? Think about it: you work hard all day, run your errands, get home, make dinner, and by the time you finally sit down, you're mentally and physically exhausted. You might close your eyes for ten minutes, check your phone, watch some TV, recuperate, and then get back up and keep moving. A person living with dementia has worked just as hard all day doing the little, mundane things they need to get done, but even when they rest, they aren't able to regenerate the same way we do. That's exactly why it's so important to front-load the day with more challenging activities and pare things down by the end of the day.

So when we look at behavior as communication, we have to ask: could they be overwhelmed? Do they have unmet needs? Are they bored? Are they reacting to something someone else said or did? Are they in pain? Are they reacting to something in the environment? We have to figure out what's actually happening for them.

What Is the "Why" Behind the Behavior?

Beneath every behavior there is a feeling. And beneath every feeling there is a need. And when we meet that need, rather than focusing on the behavior, we begin to address the cause, not the symptom (Warner, n.d.). I want you to sit with that for a second. Reread it to yourself. It's pretty powerful.

Let's talk about unmet needs. I mentioned this a moment ago: physical, emotional, environmental, and communication. Physical needs include pain, medical issues, fatigue, hunger, thirst, bathroom needs, and energy or alertness level. Emotional needs include looking for love or comfort, anger, sadness, loneliness, fear, and a lack of purpose. Environmental needs relate to whether the space is over- or understimulating, whether they feel lost, and whether temperature is impacting them. And communication needs involve whether we're over-communicating, whether our own behavior is impacting the interaction, and whether we're watching for emotions and nonverbal cues, both in how we communicate with them and how they communicate back to us.

We have to figure out the why behind the behavior, and you're going to see this same set of questions come up again and again throughout this course, because that's exactly how important it is. Is the behavior new, or what may have happened to cause this change? When does this happen, what time of day, during a particular activity or meal, when completing ADLs? Where does this happen, the dining room, the kitchen, the front lobby, their room, the bathroom? What is the environment like? What makes this happen, what happens right before the behavior, and what fixes it? Are they being asked to do something they don't want to do? Is the environment too distracting or overwhelming? Have we actually assessed their wants and needs, hunger, thirst, pain, discomfort, bathroom needs, and mobility?

We have to get curious. As care partners, we have a relationship with the person we're supporting. We should know who they are: information about them, what matters most to them, what they did professionally, the list goes on and on. It's important to understand that with dementia, change is inevitable and fluid. Sometimes they can do something, and sometimes they can't; we must respect and support them through it. Remember, the person living with dementia is doing the best that they can through these changes.

One practical tool I recommend: keep a journal. Note what the behavior was, what happened right before it, and what fixed it. Over time, you'll build a list of strategies, and once something works consistently across a few instances, you'll have it ready in your back pocket for the next time.

I know this can feel like a lot to track in the middle of a busy shift or a full caseload, but this is exactly the kind of documentation that turns guesswork into genuine clinical reasoning. It's the difference between reacting to whatever is in front of us in the moment and building a repeatable, person-specific protocol that the entire care team can use. And it's worth saying clearly: this detective work is skilled work. It takes clinical judgment to separate a physical need from an emotional one, to recognize when an environmental factor is driving a presentation that looks purely behavioral, and to translate that analysis into a concrete plan the rest of the team can follow. That's exactly the kind of reasoning we want to document in our notes and communicate across disciplines.

Protocols for Improved Care Partnering

When we talk about protocols for improved care interactions, we're really talking about two phases. For prevention, the aim is to use non-drug approaches to prevent behaviors from arising in the first place, drawing on what we've learned from prior outcomes to ensure a known trigger doesn't recur. And for de-escalation, the aim here is to respond to early warning signs so we can stop or reduce the escalation of a behavior and adequately support the person (James et al., 2023).

Let's talk about medication and antipsychotic use, because this comes up constantly. Managing agitation and aggression can be genuinely challenging. Antipsychotics should only be used in controlled environments, meaning under close medical supervision, and only for a limited time, a few weeks, when all other non-pharmacologic approaches have failed or when the person's behavior poses a substantial threat to themselves or others (Arvanitakis et al., 2019). When we start using antipsychotics, we introduce real risk: extrapyramidal symptoms like new tremors, tardive dyskinesia, difficulty swallowing, cerebrovascular events, somnolence, falls, UTI symptoms, and even death. These medications carry a black box warning, which is the highest warning level the FDA issues, specifically because the outcome can be death. So while it can feel easy to reach for an antipsychotic, that isn't always the best answer.

I want you to think to yourself for a moment, not in a chat box, just to yourself: what non-pharmacological approaches have you seen used in your own practice?

Let's look at some non-pharmacologic approaches to dementia care. The first step is always finding out what is meaningful for the person living with dementia, supporting them in a way that reflects the nuances of who they are, and making it personal: what was their routine like before, and can we mimic that from a timing perspective, along with their likes and dislikes?

Some categories to consider: cognitive-focused tasks like games, reading, art, or activities of their choosing; physical tasks like exercise, dancing, or adaptive equipment when appropriate and safe; relaxation techniques like yoga, meditation, or olfaction, appealing to the senses; social stimulation like family get-togethers, outings, or activities of choice; and entertainment of choice, music, TV, or movies.

There are additional approaches worth considering as well: adequate, uninterrupted sleep; personal hygiene preferences, bath versus shower, which shampoo, conditioner, or soap they prefer, towel versus bathrobe, which lotion they like; safety in their environment and community; planning for the future, getting personal affairs and desires in order while the person is still able to participate in those decisions, power of attorney, financial planning, long-term living arrangements and support; and effective communication techniques throughout. The more we know, the better we can be, and when we know better, we can do better.

Learn, Apply, and Be Ready (LAB) for the Next Time

Let's go back to the LAB framework, Learn, Apply, and Be Ready, for the next time. How well do we actually know the person we are caring for? Are we changing along with them as their dementia progresses? Did we get their permission before providing care? Is our own reaction changing the outcome?

Are we prepared to be a detective, to determine the why behind the behavior and put those puzzle pieces together? Have they had a change in medical status? Are there things in their personal history, a veteran with PTSD, a survivor of abuse, that may be triggered by the environment, by specific events, or by personal or intimate care? As care partners, we are integral to the puzzle in successfully supporting the person living with dementia. We have to figure out the right approach at the right time, and this may take real trial and error.

This is also where I recommend a pulse check on yourself, both during and after interactions. Ask yourself: how is this interaction going? Do I need to stop, take a timeout, rethink, and re-approach? What worked well? What do I need to change for next time? These aren't just questions for working with a person living with dementia. I do this pulse check after every treatment and evaluation I complete, because that's exactly how we become better clinicians.

If you have met one person living with dementia, you have truly only met one person living with dementia. No two people experience the disease the same way. Rate of decline, symptoms, personality, and activity tolerance all vary by individual and by type of dementia, and it's not uncommon to see mixed dementia, more than one type present at once. There is a natural course to the disease, and over time the person living with dementia will lose their ability to function in various domains. Our job is to figure out their remaining abilities along the journey and do tasks with them, not to them.

Seeing the Whole Person: Perception, Labels, and Bias

I want you to look at a picture with me. Picture a delicious donut, sprinkles, chocolate, all the good things that make you want to eat it. Now I want you to look at the same donut again, but this time I want you to describe why someone would like this item if all they could see was the hole in the middle, the empty circle. You can't reference anything outside of that circle.

What do you see? Nothing. Air. Emptiness.

That's the point. Are we looking at just a part of the person, or at them as a whole? Are we seeing the glass as half full or half empty? It's all about perceptions, labels, and biases, and as a result, are we setting the person living with dementia up for success or for failure?

Here's another one to sit with: have you ever heard a person living with dementia say, "I want to go home"? Have you ever said those exact words yourself? Think about a time you said this. What was happening around you in that moment? Why did you say it? Now think about the person you're supporting. What's happening around them when they say these same words? Why do you think they're asking to go home? Is home a physical place, or is it more of a feeling? We'll come back to that question.

Wandering

Let's move into some very specific behaviors. In each of these, we'll walk through a root cause analysis and a trial-and-error approach, and keep in mind that these strategies can be applied to many other real-life instances beyond the specific behavior named.

Wandering can be seen at any stage of dementia. In fact, 60% of people with dementia will wander at some point in the disease process, and wandering can happen without warning or may have a clear trigger (National Health Service, 2021). You'll recognize our recurring set of questions here: Is the behavior new, or what changed to cause this? When does this happen? Where does this happen? What makes this happen? Have we assessed their wants and needs? We need to learn, apply, and be ready for the next time.

Let's break it down further. Is it aimless, wandering without a specific destination, just walking, or is it purposeful, looking for something or someone, or trying to get away from something or someone? There's also shadowing, where the person follows their care partner or loved one closely, often driven by insecurity or anxiety. The care partner has become their source of comfort and safety. And there's elopement, leaving the current location without the knowledge or guidance of a care partner or loved one.

We have to look for the why behind the wandering. Are they looking for a specific place or thing, or maybe even a particular person? If they're looking for something, join them. Isn't that therapy at its best? If they're trying to leave a space, consider whether the environment is too overstimulating, and assist them toward somewhere calmer. If it's understimulating and they're bored, provide meaningful engagement to reduce restlessness. Offer familiar objects for comfort, and provide reassurance to increase their sense of safety.

We need to assess the where, when, and why behind each wandering episode, and proactively provide activities that meet wants and needs before wandering starts. Do they need rest? Are they in pain? Overstimulated? Understimulated? Do they need the bathroom? Do they simply need access to a safe, enclosed area where they can walk or sit? Can a safe environment, inside or outside, be provided to allow for wandering rather than restrict it?

I want to share a story that illustrates this beautifully. We had a woman at an assisted living community who, starting in the afternoons and continuing through the night, would wander the halls. Everyone kept trying to redirect her back to her room. But when we learned more about her history, we found out she had been an RN and a charge nurse on the night shift. Doesn't that make sense, then, why she was out and about, wandering the halls at night? Once we understood the why, her wandering made complete sense in the context of her life's rhythm.

Notice what almost happened here: without that piece of history, the team's default response would likely have been redirection, or worse, an attempt to physically limit her movement during those hours. Instead, once we understood her professional identity as a charge nurse used to being awake, alert, and moving through halls on a schedule, we could reframe the entire plan of care. Rather than fighting her rhythm, we could work with it: providing a safe, purposeful nighttime routine, perhaps even a "rounding" activity that echoed her professional role, rather than treating her most natural instinct as a problem to be corrected. This is the kind of shift that only happens when we take the time to actually learn who someone was before dementia changed how they show us themselves.

Anxiety, Agitation, Confusion, and Suspicion

Anxiety and agitation may show up as restlessness, pacing, distress, distractibility, or an over-reliance on caregivers. According to the literature, agitation has been reported in 60% of patients with mild cognitive impairment and 76% of patients with Alzheimer's disease. Confusion or suspicion may stem from not recognizing familiar people, places, or things in their environment, and sometimes this shows up as accusations of theft or infidelity.

Same questions again: Is the behavior new? What may have caused this change? When does this happen? Where does this happen? What makes this happen? Have we assessed wants and needs? We have to learn, apply, and be ready for the next time.

When someone is exhibiting these behaviors, validate their frustration and feelings. When you validate, you let them know they've been heard. You can also say "I'm sorry," even if you feel you didn't do anything wrong, because that simple acknowledgment can reduce anxiety and agitation. When you express that, you can match their feelings and frustration, and then gradually bring the intensity down, and they will mirror you. Try to survey the environment, be aware of their reality, and approach the person living with dementia calmly.

This is a good moment to revisit vision changes, because they matter enormously here. In earlier stages, a person living with dementia begins to develop what's sometimes described as binocular vision, like looking through binoculars; they have to actively move to see what's around them. In later stages, this narrows further into monocular vision. So if we approach someone from behind or tap them on the shoulder unexpectedly, we're going to startle them. And then what happens? "Laurie hit me." "Laurie had an aggressive episode." But did I really have an aggressive episode, or was it something someone did to me that provoked a startle response, because I wasn't approached in a way where I could see them coming, calmly, from within my visual field? We have to consider entering a person's visual field before approaching or touching them, and we need to remember that even when someone is directly in front of us, if we come in too close and too fast, we can still startle them. Get some distance, about six feet, and get their visual attention first.

We also need to look at the environment itself. Are they new to this space, a respite stay, a temporary environmental change like a hospital stay, followed by a return home? Are there visitors present? Are there unfamiliar or rotating caregivers? Feelings of disorientation and distraction can lead to uncertainty and confusion, and distractions like excess background noise or unfamiliar items in the environment can even contribute to hallucinations. Think about a pile of clothes, sheets, or towels draped over a chair; it can genuinely look like a person sitting there.

We have to try to find the unmet need. Don't forget to check for pain, hunger, thirst, bathroom needs, fatigue, medical changes, or a need to move to reduce restlessness. Redirect to a meaningful activity, shift toward what matters to the person, reduce distractions, create a calm environment, keep communication simple, and offer choices. Remember that a person living with dementia may lose roughly one out of every four words in a spoken sentence, so we have to keep our own communication short and simple.

This is a good place to pause on something that comes up constantly in my own practice: the instinct to over-explain. When someone seems confused, our natural reflex is often to give more information, more context, more reassurance, all in longer sentences. But if a person is already losing a meaningful portion of the words we say, adding more words doesn't add clarity; it adds noise. A single, calm sentence, paired with a warm tone and an open posture, will often land far better than a well-intentioned paragraph of explanation. Simplicity here isn't a compromise. It's the more respectful and more effective choice.

Aggression

Aggression can be verbal or physical. It can start "out of the blue" with no apparent reason, or it may stem from a clear trigger. Aggression can be unpredictable, but it's typically not intentional.

Again, we return to LAB: approach the person living with dementia calmly and guide them away from potential danger. Validate their feelings and apologize, even if you're not sure you did something that contributed to the aggression. Survey the environment and be aware of its reality and what may have caused this. Consider overstimulation, feelings of being lost, or stress from being asked too many questions or given a task that's too complex for their current ability. Assess the communication you provided against how the person living with dementia may have actually interpreted it. Remember that one-in-four-words concept: if we start speaking louder because we think we aren't being understood, we can end up shouting, and shouting looks and feels like yelling at someone, even when that isn't our intention. We have to be deeply aware of how we're communicating and what they're communicating back to us. Consider whether they're feeling a loss of control or physical discomfort, and try to find that unmet need.

Allow a timeout if needed for the person living with dementia and for you, as the care partner. Take some deep breaths; do this a few times, and the person living with dementia may even mirror you, which helps bring down that fight-or-flight response. Try a quiet space with pleasing music, nature sounds, aromatherapy, or a familiar snack. With aromatherapy, citrus and lavender scents can help ease depression and agitation. Usually, aggressive behaviors associated with dementia are upsetting, but not necessarily dangerous. We need to speak with the person's physician about medical interventions if all other non-medical approaches have failed or proven insufficient. If there is a risk of harm to the person or others, that is a genuine safety concern, and calling 911 may be necessary. Above all, we need to make sure we're providing care to the person, not to them.

I want to emphasize that last point, because it's easy in the moment to slip into "getting the task done" mode when someone becomes aggressive, especially when we're short-staffed or behind schedule. But aggression is almost always communication under pressure. It's rarely, if ever, a person deciding, with full intention, to lash out at us. It's far more often a nervous system that has been startled, overwhelmed, or pushed past its current capacity, responding the only way it knows how in that moment. When we remember that, our own response shifts from defensiveness to curiosity, and that shift alone often de-escalates the moment faster than any specific technique.

Case Study: Finding the "Why" Behind My Father-in-Law's Aggression

I want to share a personal story here, because it illustrates this concept so clearly. My father-in-law was a resident at a VA facility, a wonderful one, and we would get calls saying he'd gotten into another altercation. My husband would always ask, half-joking, "Well, did he win?" I could never ask that question myself, but we would follow up and ask what seemed to be going on.

One day, the staff caught us off guard and said the incidents were happening almost daily, and that they were going to move my father-in-law to a different room. I asked why, because the one thing my father-in-law still reliably knew was his own room. If they moved him, a new person would move into that room, and eventually someone else would be in there when he wandered back to it, which would disorient him further. The one thing he still knew, he would no longer know.

We happened to be visiting one day when the gentleman causing the altercations came into the room. He walked around, tinkered with things, and looked under the bed. He wasn't being destructive; he was tinkering. I went out and asked the staff, "Is this gentleman a mechanic, or did he work with tools?" They said yes, and asked how I knew. I told them it was because he was walking around the room as if he were trying to fix everything. I suggested finding an activity that would engage that instinct, something with tools or mechanical pieces, and if this happened every day after lunch, to be ready and prepared for it in advance. It worked. Once we understood the why, the gentleman's need for purposeful, tactile engagement, the "aggression" resolved into a redirected, meaningful activity.

Repetition

Repetition can show up in words, saying the same thing over and over, asking the same question repeatedly, repeating certain words or sounds, or in actions, wiping surfaces, wringing one's hands.

Same detective questions apply here: Is the behavior new? What changed to cause this? When and where does it happen? What makes it happen? Have we assessed wants and needs? Learn, apply, and be ready for the next time.

Start by identifying the specific repetitive words or actions. Can this repetitive action be turned into a purposeful activity, sorting bingo chips, or folding laundry? Repetitive questions may signal an unmet need, so get curious and look for the why behind it. Are repetitive actions a signal of a need for increased physical activity? Are repetitive vocalizations a sign of an unmet physical need? They could also signal an unmet emotional need: a need to feel purposeful or needed, anxiety, a sense of being lost or uncomfortable in their surroundings, or a loss of control. And sometimes, repetitive vocalizations or actions are simply a source of comfort, a sound made every time they exhale, for example.

These repetitive vocalizations, words, and actions are often not a conscious choice, but they could signal an underlying physical or emotional need, so we have to stay curious. Are the repetitive vocalizations or actions unsafe or harmful to others? And as we've discussed, look for ways to turn "their activity" into something functional, meaningful, and purposeful.

Sundowning

Sundowning is increased confusion that people living with Alzheimer's and other dementias may experience from dusk through night. It's also called "sundowner's syndrome." It isn't a disease itself, but rather a set of symptoms or dementia-related behaviors that may include difficulty sleeping, anxiety, agitation, hallucinations, pacing, and disorientation.

Real-World Scenarios: Applying the Detective Mindset

Now let's walk through some real scenarios together and put on our detective hats to figure out the why and piece the puzzle together. Keep in mind that these strategies apply to many other situations you'll encounter.

Case Study: Ms. Jones and the 3:30 Routine

Ms. Jones knows it's 3:30, and she says she has to leave to pick up her kids, but we know her kids are grown. What's really going on here?

She may be longing for connection, waiting for something meaningful, wanting to go outside, or feeling a pull toward a routine that once anchored her day. Here's how to support her:

1. Acknowledge her concern rather than correct the facts. Say something like, "Tell me about your kids."
2. Explore her history and family through conversation, bring in photos if available, and reminisce about her children or the routine she remembers from that time of day.
3. Ask about the snacks her children liked when they got home from school, then invite her to help prepare that same snack with you.
4. Redirect the emotional need, connection, purpose, and routine into an activity that channels those feelings productively.

This approach meets the emotional truth of her statement (a routine, a role, a sense of purpose) rather than fighting its factual inaccuracy, and it gives her something meaningful to do with the feeling.

Case Study: Approaching with Presence and Permission

In this scenario, a care partner approaches a gentleman to offer a drink or medication, but he reacts defensively. Looking closer, she's coming at him quickly, standing over him, and grabbing his arm without warning. He hasn't had a chance to see her coming or give his permission. This isn't abuse, but it also isn't quite a partnership; it's an agenda arriving before a relationship does.

Knowing what we know now, here's a better approach:

1. Get attention from the doorway first, rather than walking straight up to the person.
2. Lower yourself to the person's eye level and sit down if possible.
3. Speak as you enter the room, so your voice reaches them before your body does.
4. Get into their visual field before making physical contact, bending down or sitting beside them rather than standing over them.
5. Ask permission to enter their space and start a conversation before initiating any task.
6. Know your agenda, but don't lead with it. Work on the task with the person rather than doing it to them.

Case Study: Tom and the Garden

Tom loves to garden, but he's in a setting with a beautiful outdoor view and no easy way to actually get out there. How would you feel if you couldn't go outside when you wanted to?

Here's how we can support Tom's desire to reconnect with something meaningful to him:

1. Schedule consistent, predictable outside time rather than leaving it to chance.
2. Bring Tom outside to a raised garden bed where he can safely engage with plants and soil.
3. Adapt a gardening program to his current physical and cognitive ability level.
4. Create a genuinely good outdoor experience: a place to sit, a walking path, even a cup of coffee outside if that's something he enjoys.
5. If getting him fully outside isn't always possible, bring elements of the outdoors in, plants, natural light, and garden-themed sensory activities.

We often do a good job giving people a lovely view, but we don't always give them a way to use it. The goal is to actually use the space we have.

Case Study: Leona and the Maraca

Leona is busy shaking and patting a maraca across all the furniture in the room, making quite a bit of noise. It's frustrating for everyone around her, understandably so. But here's what we learned: Leona used to be a housekeeper, and she cleaned houses for a living.

Once we understood the why, purposeful, familiar, competence-affirming motion, we could support her differently:

1. Recognize that Leona is engaging in a task she knows deeply, cleaning, just with the wrong instrument in hand.
2. Replace the maraca with a feather duster or a cleaning cloth that matches the motion she's already making.
3. Give her the appropriate tools to fully engage in the cleaning task she's oriented toward.
4. Consider offering a pre-planned cleaning activity at a similar time each day, since this appears to be a recurring, purposeful behavior.
5. Provide her with a private space if the activity or noise is disruptive to others nearby.

From a therapy lens, this activity also supports balance and core strength, so meeting the need appropriately benefits her physically as well as emotionally. Leona wasn't being disruptive; she was doing what she knew best. She just needed the right tool for the job.

I Want to Go Home

Let's circle back to "I want to go home." Knowing what we know now, what can we do differently? Maybe we can bring her home, incorporating familiar objects, photos, or textures that evoke her home environment and space. We can also say, "Tell me about home," because remember, the person may be looking for a feeling, not an actual physical place.

The OT Practitioner's Role

Through the scope of occupational therapy, dementia is influenced by all domains: occupation, client factors, performance skills, patterns, and the individual's context and environment. This plays out through ADLs, leisure, social interactions, and participation, and our job is to find the just-right fit between the environment and the demands of a given task.

Let's look at how our agenda aligns with theirs. When we push, they're going to push back. Refusing versus responding isn't really about the task itself; it's about the emotion underneath it. It's more than a task, it's about the experience. Take a shower, for example. What's important to know: how did they take a shower before? What order did they follow? What temperature did they prefer? When we look at refusing versus responding, is it tied to an emotion, maybe fear? Maybe they see someone in the mirror they don't recognize, because they don't fully believe that's who they are anymore, sometimes connected to retrogenesis, where they're mentally returning to an earlier point in life. Maybe they have PTSD. Maybe the room is too cold. Maybe the sensation of water hitting their skin feels like pins and needles.

So what can we do? If they may be afraid of the space, try a different one. Cover the mirror if it's distressing. Find out their exact routine and step order, which products they're comfortable with, and their own towels and robe. And if water sensation is the issue, put a towel over them so the water hits the towel first rather than their skin directly.

Environmental modifications matter enormously here, and education around the right interventions is key. Let's talk through a few Montessori-informed, meaningful, and functional approaches. **Music**: rhythm remains accessible even late in the disease process, so use music to support transitions, like getting into the shower, or to accompany the shower itself if the person enjoys it. One-to-one engagement is what's meaningful to one person may not be meaningful to another, so we need to know specifically what matters to this individual. Environmental modifications are recommendations to make the space safer and more supportive. Aromatherapy can improve mood-related and psychological symptoms like depression. And labeling, depending on where someone lives, can make a real difference, such as in cabinets, drawer contents, exits, the bathroom, and anything that could otherwise cause confusion and make the day harder than it needs to be.

Case Study: My Father-in-Law's Sticky Notes

I'll share another story about my father-in-law here. My mother-in-law passed away well before him, though she was seventeen years younger; everything they had ever prepared for assumed he would go first. After she passed, when we visited his house, we found an entire pack of sticky notes throughout the home: reminders to put the laundry in, how to turn the washing machine on, how to turn it off, how to measure the detergent, all of it. That labeling system was his own self-created strategy, and it worked for him. The lesson is that we have to find what works for each individual person. The overall goal of labeling and environmental modification is to increase safety and reduce the wandering and confusion that can lead to anxiety and aggression.

Task Performance and Maximizing Abilities

Occupational therapists are experts at understanding the intricate relationships between the person, the environment, and the occupation required for successful task performance, the PEO model. There are eight domains of occupation overall, but when we focus specifically on dementia, five are most directly relevant, since most people living with dementia are older adults who are typically retired. We do occasionally support younger individuals who may still be working, in which case the full scope should be considered. The five most relevant domains are ADLs, IADLs, rest and sleep, leisure, and social participation.

OT's focus is on supporting the best possible functioning of the person living with dementia while providing education and skills training, communicating effectively, simplifying activities, and supporting care partners so that they can experience success too. To help maximize abilities, this process may involve identifying activities that are meaningful and appropriately simplified, and then implementing them in ways that optimize engagement by removing stressors and distractions. It also involves collaborating directly with care partners to help them recognize and adjust aspects of the activity and environment that enable greater engagement and participation.

This is where our clinical reasoning as OT practitioners genuinely shines, and it's also where I want to be direct with you about skilled documentation. When people ask, "Is this really skilled?" my answer is absolutely yes. It takes our specific skill set to look at the person, the environment, and the occupation together, and to identify exactly where the breakdown is occurring and why. It takes clinical reasoning to simplify a task correctly, not so simplified that it removes all meaning and dignity from it, but simplified enough that the person can succeed. Make sure your goals reflect that reasoning directly, and clearly identify your skill set in your documentation, particularly around the PEO model and its component facets. Facilitating staff education and return demonstration is also part of this skilled work, and it's worth noting that billing code 99483 exists specifically for care planning services related to a one-time education, training, and support visit. Knowing the code and using it appropriately helps ensure this work is recognized and reimbursed as it should be.

Being the Best Care Partner We Can Be

Let's bring all of this together. Sometimes we have to take a step back, assess, rethink, and try again. This involves pulse-checking yourself. It involves de-escalation. When something does happen, what do we do to help fix it in the moment? It involves prevention, trying to stop the behavior before it even starts. And it involves going back to LAB, learning, applying, and being ready, and repeating that cycle again and again.

As a reminder, a behavior isn't necessarily a "behavior" at all; it's often an attempt to communicate an unmet need. We must find the why behind the behavior so we can address the cause instead of just the symptom. People living with dementia look to us, their care partners, to see how we're feeling and how we're reacting, including how we react to them specifically. So when we think about behavior, we have to look at ourselves first. Is our reaction changing the outcome? How well do we know the person for whom we are caring? Are we changing along with them as their dementia progresses? Did we get their permission before providing care? Are we prepared to be the detectives who determine the why behind the behavior and put those puzzle pieces together?

We have to learn, apply, and be ready for the next time. Put on the detective hat, figure out the why, get curious, join the reality of living with dementia, reflect on what went well and what didn't, and consider the full range of possibilities to make adjustments. We are, in every one of these moments, learning about the perspective of the person living with dementia and what might genuinely be causing what we're seeing.

As care partners, our job is to empower those who are living with and caring for people with dementia to improve the quality of care and quality of life for everyone on this journey. Caring for someone living with dementia is an honor, but it is not easy. We have to put together the puzzle pieces for truly person-centered care.

I also want to acknowledge something we don't say often enough: this work is hard, and it's okay to feel that. Care partners, whether family members or professional clinicians, are human beings with their own limits, bad days, and moments of frustration. Pulse-checking yourself isn't just a clinical technique; it's also a form of self-compassion. If you notice you're depleted, or that your patience is thinner than usual, that's valuable information too, not a personal failing. The best care partners I've worked with over the years aren't the ones who never feel frustrated. They're the ones who notice the frustration, take the pause they need, and come back to the interaction with curiosity restored.

Reframing the Language We Use

The language we use to describe behaviors matters, because it has the power to negatively influence our thoughts, beliefs, emotions, and behaviors toward the person living with dementia, and it can create stigma. Consider this list: fear, worry, loss of confidence, impatience, feeling unsafe, feeling unsupported, stress, panic, losing independence, frustration. These aren't necessarily "behaviors" at all. Maybe they're simply the same things we experience in daily life, just showing up differently in someone whose brain is changing.

I want you to realize: it takes two to tango, or two to tangle (Snow, n.d.). Remember, the person living with dementia is not giving you a hard time. The person living with dementia is having a hard time (Unknown, n.d.). And there is one person in this relationship who has the ability to change course. It's us. We are the ones who decide how this plays out, whether we tango or whether we tangle.

Interprofessional Collaboration and Overcoming Barriers

Let's take a moment to reflect on how this content applies to your work as part of a broader healthcare team. Where do you see opportunities for interprofessional collaboration in your current setting?

An interprofessional barrier is anything that prevents effective collaboration across disciplines, often because we focus on the "behavior" rather than the person and the "why" behind what's happening in that moment. To overcome these barriers, we examine interactions clearly, figure out the why, and identify ways to reduce risk and prevent recurrence. We figure out what works and what doesn't, and we break down barriers by communicating triggers to the entire interdisciplinary team so everyone can learn, apply, and be ready next time.

It's important to keep a few strategies in your back pocket because no single approach works every time. Things are fluid throughout the day, and what worked once might not work again. It's essential to keep the lines of communication open with every member of the interdisciplinary team, because things will continue to change for the person living with dementia. We need to constantly return to LAB together, as a team, with the person living with dementia recognized as the expert through their own lived experience. This course has offered many ways to shift our thinking so we can view what's occurring through a genuinely different lens.

Think about what this looks like in practice. If you, as the OT, discover that a resident calms down reliably when approached from the front and given a specific verbal cue before any physical contact, that information shouldn't live only in your treatment notes. It needs to reach nursing, the CNAs on every shift, dietary staff, activities, and family members, everyone who interacts with that person throughout the day and night. Likewise, if the overnight nursing staff notices a consistent trigger during a particular part of the evening routine, that observation is just as clinically valuable as anything we discover in a formal evaluation. Interprofessional collaboration in dementia care isn't a nice-to-have; it's the mechanism by which one person's insight becomes protection and support for the whole team and, ultimately, for the person living with dementia at every hour of their day.

Conclusion

Before we close, I want you to ask yourself: what is your love language? What makes people tick? If you were creating your own care plan, what would you want it to say? And how well do we actually know the answers to those same questions for the person we're caring for? How would they respond?

I also want you to think of a current or recent person living with dementia who had a challenging moment that you encountered. What might you change based on what we've covered today?

We started this course by talking about behaviors, wandering, aggression, repetition, anxiety, sundowning, and I hope you're leaving with a different lens on all of them. We talked about the four potential reasons behind the "why" of a behavior: physical, emotional, environmental, and communication-based unmet needs, and how figuring out that why changes everything about how we respond. We talked about three concrete ways to support the person living with dementia in their environment: through non-pharmacologic and environmental strategies like music, labeling, and personalized routines; through the PEO model and the domains of occupation most relevant to ADL performance and meaningful engagement; and through the recurring LAB framework of learning, applying, and staying ready for the next time. We drew a clear distinction between caregiver and care partner, and how that shift in language and mindset changes outcomes, moving from care done *to* someone toward care done *with* them, built on permission, dignity, and relationship. And we talked about evidence-based principles for showing up as part of an interprofessional team: shared language, shared observation, and a shared commitment to communicating triggers and strategies across every discipline involved in someone's care.

Remember: beneath every behavior is a feeling, and beneath every feeling is a need. When we meet the need rather than react to the behavior, we address the cause rather than the symptom. The person living with dementia is not giving us a hard time. They are having a hard time. And we are the ones who get to decide, every single day, whether we tango or whether we tangle.

References

See additional handout.