Building Relationships Beyond The Diagnosis: Words And Actions Matter In Caring For Those Living With Dementia

Editor's note: This text based course is a transcript of the webinar, Building Relationships Beyond the Diagnosis: Words and Actions Matter in Caring for Those Living with Dementia, presented by Laurie Walther, MS, CCC-SLP.

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

Learning Outcomes

After this course, participants will be able to:

• Identify three ways that our words and actions matter and how this can impact the outcome of an interaction.
• Identify three behaviors commonly exhibited by individuals with dementia and explain the underlying needs or messages each behavior may be communicating.
• Identify three ways occupational therapy practitioners can support individuals living with dementia and their care partners to strengthen relationships and maximize functional abilities.
• Identify evidence based principles for interacting with individuals with dementia within an interprofessional team to support treatment across care settings.

Introduction

I have a ton of information to relay in a short time today, so fair warning: I do tend to talk quickly. I want to fit it all in for you. If you have seen one of my presentations before, you know they are meant to be interactive. You will see moments labeled chat time, where I want you to get into the chat box and answer a question I propose, and moments labeled think to yourselves, where I want you to sit quietly and apply what we just reviewed to your own practice.

So let us jump right in. Dementia changes everything. It changes how a person communicates, how they move through the world. Their abilities may fade, their memories may blur, their independence may slip away. But what it does not change is who they are, their dignity, or their makeup. As care partners, we should choose to look beyond symptoms and see the whole person: their identity, lived experience, relationships, and presence. We should exhibit respect and compassion in every interaction. What I will be sharing today is about changing perceptions, shifting perspectives, and evolving how we show up for the people we support.

Let us try our first chat time question. When you think about dementia, what are some of the words or thoughts that come to mind? Memory, memory issues, confusion, fear, sadness, loss, sundowning, caregiver education, elderly. Yes, all of those things.

When we talk about roles for the person living with dementia (PLwD), there are terms we typically use for supportive personnel, usually "caretaker" or "caregiver". But we are starting to hear more and more about care partners because when we partner with someone, we are invested, collaborating, and in a relationship. As a result, the care we provide reflects a "we are in this together" mentality, and this helps improve the quality of care outcomes. I do not care how you slice it, these are all terms you have heard before: personhood, patient-centered care, knowing someone's ins and outs, good customer service, guided care, personalization, and knowing their likes and dislikes. At the end of the day, it is truly about building relationships and how you make the person feel.

Dementia Changes Everything

Let us do a quick overview of dementia to set the tone. The impact of dementia truly changes everything over time. It is not a normal part of aging. It is not something a person can control. It is not a mental illness. It is real for every person, and it is hard at times. It is also fluid, so sometimes they can, and sometimes they cannot.

So when you look at the words dementia, Alzheimer's disease, and memory problems, what is the relationship between these three terms? A lot of people think they are interchangeable, but dementia does not equal Alzheimer's disease, and it does not equal memory problems.

About how many different types, forms, or causes of dementia do you think there are? Three, four, five, seven, ten, dozens, a hundred. There are a lot, and dozens is actually a pretty good way to put it. Both the Alzheimer's Association and Teepa Snow's Positive Approach to Care describe dementia as an umbrella term covering over 120 different types, forms, and causes of brain change. We have all heard of Alzheimer's disease, and it is truly one type of dementia under that umbrella. We have heard of Lewy body dementia, often associated with Robin Williams. We have heard of vascular dementia, associated with strokes, and frontotemporal dementia, associated with Bruce Willis. But there are many other types, each with its own distinct symptom profile. Knowing the specific form of dementia a person has helps guide the care and support we provide. The tricky part is that people do not always receive a formal diagnosis, so a lot of the time we are treating the symptoms in front of us, and all dementias are not created equal.

Progressive Brain Changes

Let us talk about the progressive brain changes we see across the spectrum and journey of dementia. We have our five senses: vision, auditory, tactile, smell, and taste, how we take in data from the world. We have language to process information and communicate our wants and needs. We have self-care tasks: dressing, grooming, hygiene, bathing, feeding, toileting, all the things you all know intimately. But to accomplish any of these tasks, we have to be able to sequence, meaning we start something, initiate it effectively, complete all the steps, and then terminate it effectively. Along the way, we encounter hundreds of objects we must identify and know how to use. And underneath all of it sits cognition: recall, judgment, problem solving, safety awareness, and attention. We are going to see all of these domains shift across the progression and journey of dementia.

I want to pause on why this matters so much before we go domain by domain. It is tempting to hear a list like this and file it away as background knowledge, something we already know in a general sense. But each of these domains is a lens we can actually use in the moment, at the bedside, in the dining room, during a transfer. When we see something that looks confusing or frustrating in a person's behavior, running it through this list, is this vision, is this language, is this sequencing, is this object identification, is this cognition, gives us a starting point for genuine clinical reasoning instead of a label. That is the whole spirit of this course. We are not just learning facts about dementia. We are building a habit of asking better questions before we react.

I want you to think to yourselves for a moment. Has anyone ever experienced issues with their own vision, and how did that impact them? We all experience some changes as we get older. When we think about sensory changes from a vision standpoint in the older adult population, we generally think of conditions like macular degeneration, cataracts, or figure-ground difficulty, where a plate with chicken, mashed potatoes, and cauliflower looks like one big white blob. But when we talk specifically about dementia, we are talking about functional changes in vision.

Try this with me. Put your hands behind your head. That is your occipital lobe, and it controls your vision. Now put your arms straight out to your sides and wiggle your fingers. Many of you probably cannot see your fingers wiggling right now if you keep your head straight, and that is because we start losing peripheral vision around age 50. Bring your arms in closer until you can keep your head straight while still seeing your fingers wiggle. That narrower range is roughly what someone in the earlier stages of dementia experiences, something like looking through a scuba mask. As the disease progresses into the moderate stages, the visual field narrows further, more like looking through binoculars, and a person has to actively turn their head to see what is around them. In the later stages, it narrows again into something closer to monocular vision, looking through essentially one small area. By the very end stages, that visual regard is extremely small.

Think about what that means functionally. If someone is walking and looking straight ahead with that narrowed binocular vision, what might they miss? Anything below their eye line, a change in floor surface, or an object in the hallway, they might trip. If instead they are looking down because they are unsure of their footing, they might walk right into another person. This plays out at the dinner table, too. If a person is looking across at their tablemate rather than down at their own tray, they may reach for their neighbor's plate simply because it is in their visual field, not because they dislike their own meal.

Sensory changes affect hearing, too, though what is really happening is more of a comprehension and language issue than a true hearing loss. Think to yourselves for a moment. Has anyone ever experienced an issue with their hearing, or had trouble understanding something someone said to them, and how did that impact them? In the early stages of dementia, a person will start missing about one in four spoken words. As the disease progresses, they will miss more, and while they may still catch some words or phrases, those fragments will often come across out of context. They may still respond to social chit chat, rhythm, and tone of voice. In the later stages, they may only produce sounds or single words in response to strong emotion, things like repeated protests when they feel overwhelmed. This is not a hearing problem. It is a comprehension and language problem, and getting louder does not fix it. Getting louder just starts to sound like shouting, and shouting looks and feels like yelling at someone, whether or not that is the intention.

I want to sit with that one-in-four number for a moment, because it is easy to hear it once and move on without letting it fully land. Imagine listening to someone speak to you and losing every fourth word entirely, no gap, no pause, just gone. Now imagine that number climbing as the disease progresses, half the words, then more. We would all struggle to keep up with a conversation under those conditions, and most of us would eventually stop trying to track every detail and instead rely on tone, facial expressions, and context to infer meaning. That is exactly what a person living with dementia is doing, and it tells us something important about our own responsibility in the exchange. If they are compensating by reading our tone and body language more heavily, then our tone and body language become the primary message we are sending, whether we intend that or not.

When we talk about communication changes more specifically, it helps to think of the brain divided into two halves. On what we can broadly call the language lost side, we lose formal speech and language: vocabulary, comprehension, and clear speech production. Words may keep coming out, but with less and less content behind them. On what we can call the rhythm retained side, several things tend to stick around much longer: expletives (sometimes a person who never cursed before becomes remarkably fluent in it), social chit chat (which is often why a doctor's brief hallway greeting fails to reveal how much has actually changed), rhythm of speech, automatic phrases and greetings, and music, poetry, and prayer. That is why something like a favorite hymn or a nursery rhyme can reach someone who can no longer hold a normal conversation.

There are additional sensory changes worth knowing. Tactile changes can bring on food aversions, altering pressure sensitivity (requiring a lighter touch in earlier stages and often a firmer touch later), and altering sensitivity to temperature and texture. That shirt tag that never bothered someone before may suddenly feel unbearable, which is sometimes why a person starts removing clothing that seems perfectly comfortable to us. Taste changes, too. Bitter and sour registers fade before sweet and salty, which is why cravings shift toward sweeter foods, and it is genuinely fine if someone wants dessert first. Food may also simply start tasting different or wrong compared to before. Smell fades gradually, which carries a real safety risk at home, since a person may not smell smoke, gas, or the aftermath of an accident. On the positive side, scent can still be a wonderful tool for calm, citrus, and lavender in particular, and certain smells like baking bread or a favorite roast can bring back genuinely good memories.

Think to yourselves once more. Has anyone had an issue with the ability to move as desired, and how did that impact you? When we think about motor changes from a dementia perspective, we are really talking about strength versus skill, big movement versus fine motor control. There is difficulty using both hands together for fine motor tasks like buttons and zippers. There is difficulty sequencing multi-step tasks. There is often a strong grasp paired with decreased hand skill, which shows up as difficulty letting go, and is part of why we see more contractures in later stages. What remains, remarkably, is rhythm, so we can use rhythm to support motor movement even when a person cannot initiate it on their own.

Words and Actions Have Power

Dementia truly does change everything, but our own words and actions have power, too, and the way we interact can make a genuine difference. Our words and actions influence how we act and think. They create misinterpretations, misperceptions, and labels. They shape our understanding of what is going on around us and influence how we respond. And they allow us to respond in a meaningful, positive way that can entirely change the outcome of a situation.

How have words or actions impacted you in a negative way? Made me mad, hurt my feelings, ruined relationships, made me feel put down, made me feel alone, made me anxious, and made me second-guess myself. And conversely, how have words or actions impacted you in a positive way? These same tools that can wound us can also lift us up, and that duality is exactly why this topic deserves our attention.

Research Behind the Concept

Language is fundamental to human communication and identity, and alterations in linguistic ability profoundly impact a person's capacity to communicate and maintain their sense of self (Lei & Jiang, 2025). One of the most significant challenges people living with dementia and their family carers face early in the condition is the gradual, often unnoticed decline in communication ability, which reduces opportunities for meaningful engagement (Moyle, 2023).

Let us talk about two cognitive biases that show up constantly in our field. Anchoring bias occurs when initial information, often something passed along at a patient handoff, shapes how we treat someone regardless of any conflicting information that comes later, and this can delay care or contribute to misdiagnosis when we fail to adjust to new information (Valdez, 2021). Confirmation bias occurs when we selectively seek or accept information that confirms an opinion we already hold, even when contrary information is right in front of us. Here is how this plays out. If someone tells us at handoff that a person "has behaviors" or is "combative," we go in looking for exactly that, and when we find it, that is confirmation bias reinforcing itself. Even if we do not see it, or if we see something entirely different, we may still hold onto that initial label. That is anchoring bias, and it leads directly to stigmatizing labels that stick with a person long after the moment that created them.

These two biases feed each other in a way that is worth naming clearly, because once you see the pattern, you cannot unsee it. Anchoring gives us the starting belief. Confirmation bias then goes to work defending that belief against anything that might challenge it. A single line in a chart, "aggressive with care," written on a hard day months ago, can quietly follow a person through every subsequent shift change, every new admission to a unit, every introduction to a new therapist who has never actually met them. None of us intends for this to happen. It happens because our brains are built to look for patterns and to conserve effort, and confirming an existing belief is simply easier than questioning it. The antidote is not willpower alone. It is a practice of actively asking ourselves at the start of every interaction: what do I actually know about this person right now, today, versus what I was told about them once?

Using labels and demeaning phrases can be stigmatizing and have a negative, lasting effect because labels are, in a sense, a form of learned language. They lead to stereotypes and biased care, which in turn can result in real harm and worse health outcomes. Let us look at some language to avoid: dementia sufferer, demented, senile or senile dementia, calling someone a burden or a cause of burden, victim, plague, epidemic, enemy of humanity, describing dementia as a living death, and the word sundowner. These terms forget the person entirely and fixate on the condition.

What we want to use instead is person-first language: person with dementia, person living with dementia, or person living well with dementia. This maintains dignity without judgment (Dementia Engagement and Empowerment Project, 2014). When we put the person before the disability, the diagnosis, or the perceived limitations of that diagnosis, we honor something essential. A person living with dementia has lived, and can continue to live, a meaningful life. They should be identified by who they are, what they did, and what titles they held. Knowing these characteristics is what makes them who they are as a person. They are so much more than their diagnosis.

Engage with Me and the OT Practitioner's Role

According to the Alzheimer's Association, occupational therapy is one of the most effective non-drug approaches available for dementia, supporting daily function, reducing behavioral symptoms, and helping care partners feel more confident in their role. Our job is to meet the needs of the person living with dementia by asking ourselves a few key questions. What interventions are we focusing on, and why? How flexible is this intervention, and how can I adapt it as needed? What additional factors do I need to know about this person that may impact the plan? We also have to remember that not every approach works for every person, and what works one day may not work the next. The right combination of strategies will keep changing as the dementia progresses, which is exactly why our clinical reasoning has to stay flexible too.

The PEO model, person, environment, and occupation, is one you all know intimately. It emphasizes the transactional relationships among these three elements. Every purposeful or meaningful activity a person engages in is an occupation, and how well a person can perform that occupation within their environment is called occupational performance. Our job is to identify the optimal occupational performance by assessing both strengths and areas of opportunity, then bringing person, environment, and occupation together into a coherent plan of care.

The role of OT working with a person living with dementia touches several specific areas, and I want to walk through each one.

Enhancing or maintaining participation in ADLs means allowing the person to do what they can, and doing tasks with them rather than to them or for them. We evaluate where a task actually breaks down and recommend the best way to support at the right moment, always remembering that the person can often still do the task, just not the entire task unassisted. A lot of the time, when ADLs become difficult, our instinct is to jump in and simply do it for the person. Our job instead is to find the exact point where the task breaks down and redesign the path so the person can still complete it. If someone is getting dressed, we might lay their clothes out ahead of time. We might offer a choice between the blue and red shirts rather than opening the whole closet to them. We might use magnetic closures or pull-on garments instead of buttons or zippers, and offer one verbal cue at a time. The person still gets dressed. They simply do it along a cleaner, more supported path.

I want to share something from my own practice here, because it speaks directly to this idea of finding where a task breaks down before we ever touch the task itself. Every single time I walk through a door to see someone new, the very first thing I do is put my hand out and say, "hi, my name is Laurie," and I wait. That handshake tells me an enormous amount before we have even started. Are they able to respond? Do they give me visual regard? Do they take my hand back? That single small moment tells me where they are cognitively and whether I have earned enough trust yet to move forward. I have walked into rooms where a person was restrained the day before at the hospital, and by day two, they sat up and opened their arms for a hug. Nursing staff have half-joked that I am some kind of "dementia whisperer." I always tell them no, I just know how to build a relationship, and it takes time and intention to learn how to do that. That handshake, that pause, that willingness to let the person set the pace, is itself the assessment. It tells me exactly where the task is going to break down before I ever attempt the task.

Environmental safety and modification can reduce dementia-related behaviors, improve occupational participation, and enhance overall safety. We need to make sure the space itself supports the person, because a confusing environment is exhausting to navigate. Better lighting, visual labels on doors and drawers, clear color contrast, and reduced clutter all support more independent movement and greater safety.

Cognitive stimulation uses individual and group work, as well as meaningful activities, to keep thinking active. Research on OT-based cognitive stimulation approaches for older adults with dementia consistently shows improved outcomes in meaningful activity engagement, cognitive and sensory functioning, ADL performance, and care partner training.

Sensory-based activities tap into the senses we discussed earlier, how a person takes in information from the world. As dementia progresses, structured, language-heavy tasks become harder, so leaning into music, gentle touch, and familiar scents can reach people who can no longer respond meaningfully to conversation. Someone who loved cooking may no longer be able to follow a recipe, but they can still snap green beans or use a blunt knife to slice a banana and feel genuine satisfaction in that small, purposeful act.

Routine and structure matter because dementia can make the world feel deeply unpredictable, and consistency helps the brain feel safer. Predictable moments of connection lower anxiety and strengthen trust. Consistency is key: greet the person the same way every time, visit at around the same time of day, share a familiar routine like coffee, reading, or music, and let them sit in a favorite chair or a familiar spot.

Quality-of-life work is supported by a substantial body of research showing that improving participation in activities and engaging people in meaningful ones reduces dementia-related behaviors and improves quality of life for both the person living with dementia and their care partner. These activities can include sensory stimulation, physical activity, cognitive stimulation, leisure activities, and social engagement, individually or in combination.

Care partner support is a huge part of what we do. Our goal in these collaborations is to reduce dementia related behaviors, reduce care partner burden, and increase safety and quality of life by sharing what is working, adjusting as needed, and trying again. It becomes this ongoing loop: gather strategies, keep them in your pocket, and pull them out exactly when you need them.

Look at the Possibilities

I want to share some specific ways to maximize brain firing through movement. If you have ever heard of Ageless Grace, it is an exercise program that pairs physical movement with a cognitive task. No one looks graceful doing it, myself included, but that is the point. You might start circling your right leg, which engages the cognitive aspect of tracking that motion while your quad fires. Then you add making an X shape with your left hand. Again, nobody looks polished doing this, but the value lies in getting the brain to fire in more than one place simultaneously. You can also use a dowel, or simply your hands, to bat a balloon while lying in a recumbent position for core strength, or have someone name items while exercising, naming each movement as they march, for example. There is also a wonderful example on social media from an instructor named Ruben Thickstun, who combines cognitive tasks with physical movement using a ball in creative ways, well worth looking up.

We also have to recognize that muscles do not experience memory loss. I used to hear from therapists all the time, "Well, I cannot work with them because they cannot carry over anything I teach them." But that is not actually where the deficit lives. By tapping into repetition and procedural memory, which is central to so much of what we do, we can access something powerful: the idea that the body remembers how to perform a task automatically, playing an instrument, singing, knitting, dressing. We can set people up for success by leaning into that muscle memory. Balance can be tricky to work on directly, but working on it through music and dance often unlocks progress that a purely clinical balance exercise never would. Function, function, function. Remember the theory of retrogenesis: the first skills we develop as infants (bed mobility, eating, transfers, toileting) are also the last skills to go. That gives us a real place to tap into the remaining function even in advanced stages. It is all about changing perceptions: use it until you lose it, then figure out what you still have and how to use it.

A Practical Example: Tactile Seeking Behavior

I want to walk through a real clinical question that comes up often, because it shows this reasoning in action. What do we do when someone puts everything in their mouth, clearly seeking tactile and sensory input? The first and most immediate step is removing anything from the environment that genuinely should not go in their mouth, which is easier said than done in a shared living space. But this is exactly where streamlining the environment matters most, clearing away what does not belong there as thoroughly as we reasonably can. There is a real complication worth naming here, too. Once that tactile seeking is redirected toward food, a person may want to eat far more often than before. If weight gain becomes a genuine concern, we can offer something like celery, a food that satisfies tactile and oral seeking with far fewer calories. The broader lesson is one we keep returning to throughout this course: look at the environment first, streamline it as much as possible, and then build the plan of care around what is actually driving the behavior rather than the behavior itself.

This same reasoning holds even outside of the most common dementia presentations. When we work with someone living with dementia who also has an intellectual or developmental disability, such as Down syndrome, the core approach does not change. We still tap into what that person can do. We still do with them rather than to or for them. We still support their engagement in occupations that are specifically meaningful to them. The framework holds because it was never really about a particular diagnosis in the first place. It was always about the person in front of us.

Talk to Me, Not About Me

Remember, we are dealing with people, not a disease. Be hopeful, helpful, and kind. When it comes to dementia, our words and actions can have a strong influence on the person living with dementia, their family members, friends, and care partners. They affect self-esteem and mood. They are fundamental to making a person feel valued, heard, and supported. And they can foster genuine engagement and mutual respect, laying the foundation for a real relationship.

If you are having a conversation about the person living with dementia while they are present, and you are discussing them as though they are not in the room, stop. Even if they cannot actively participate in the conversation, out of respect and dignity, include them in the discussion, or hold that conversation at another time entirely. Although they may not be able to fully express themselves or fully comprehend what is being said, the feeling of inclusion or exclusion can still affect their demeanor.

We also have to be careful with the words we choose. We want to avoid the word "behavior" and phrase it to "acting out" because this language diminishes and stigmatizes, can come across as offensive, and demonstrates a lack of understanding on our part. Calling something a behavior and folding it into the disease itself confuses what is actually happening. What we want to say instead is unmet need. Working with people living with dementia means understanding them, and it is important to uncover the root cause of what is being expressed rather than simply labeling and moving on.

It's All in the Approach

It is all about choosing wisely, because our words and actions have real power. They can impact dignity, trust, and identity. They have the power to lift someone up or bring them down. They can soothe or cause distress. They can empower, or they can diminish. Small shifts in our words and actions can create calmer, more meaningful moments.

Connection really does matter more than correction. When we connect rather than correct, we begin to investigate with curiosity instead of judgment. We do not tell someone they are wrong when the details are not quite right, because at the end of the day, they are filling in the gaps as best they can, and our job is to meet them where they are. We want to talk with them, not to them, and we want to do things with them, not to them or for them.

When we correct someone living with dementia, we often see immediate pushback: frustration, anger, tears, withdrawal. That is not defiance. It is a reaction to feeling dismissed or embarrassed. Imagine how it would feel if someone corrected your every memory, thought, or decision throughout the day.

Think about what correction actually communicates, even when we mean well by it. Every time we say "no, that's not right" or "remember, we already told you that," we are implicitly telling someone that their internal experience of reality is invalid, that the version of the world they are currently living in does not count. For most of us, having our reality repeatedly invalidated would be exhausting and demoralizing very quickly. For a person living with dementia, whose sense of self and orientation may already feel unsteady, correction can chip away at something even more fragile, their basic trust that the people around them are safe to be vulnerable with. Connection asks something different of us. It asks us to set aside the factual accuracy of a moment and instead attend to the emotional truth sitting underneath it, the fear, the longing, the confusion, the need for reassurance, and to respond to that instead.

Building a relationship starts with respect, and respect reminds the person living with dementia, "you matter, and you are still you." A few validation statements worth keeping close at hand: "This sounds so important to you, tell me about it," "You are always so caring, and that hasn't changed," "You are so good at this," and "I could really use your help."

From an approach and strategy standpoint, let us look at three lenses: the person, the family, and the care setting. With the person, we want to know their needs, values, history, and concerns, and remember that the person living with dementia is the expert through their own lived experience. With the family, we want to keep the dialogue going, keep them involved in care, and make sure information flows both ways, not just from us. In the care setting, we are adapting our communication and actions to fit the environment we work in.

The techniques that may be beneficial fall into three categories: verbal (our language itself), nonverbal (visual cues, touch, and ensuring our actions match our words), and external (environmental tools available to us). We need the environment itself to support positive communication.

Support for staff matters just as much as support for the person we are treating. That means training through hands-on practice, education through return demonstrations, and emotional support simply by recognizing that this work is hard. Cultural considerations matter here, too. In our multiethnic society, using incorrect language can reinforce myths and stereotypes about dementia, so we need to deliver culturally appropriate education and services that improve dementia awareness and cultural friendliness in our communities. We also have to probe a family's cultural understanding and acceptability around the symptoms being experienced, especially around the time of diagnosis.

Words Matter

The language we use can go a long way toward advancing positive associations with aging and encouraging inclusivity, or it can do exactly the opposite. Let us discourage terms like aged, elderly, or senior citizen when they carry a negative connotation, in the same way that describing a person living with dementia as suffering, a victim, or demented does real harm. These are harmful barriers and stigmas, and the words themselves diminish the person they are describing. Words matter because they can create discrimination, create stigma, cause shame, and reinforce negative stereotypes and misunderstandings around both dementia and aging.

What are some of the negative connotations we have heard related to people living with dementia in the therapy world? Won't participate, no carryover, they won't remember anyway, combative, difficult, cannot be independent, no progress, unable to do something, lazy, agitated, won't engage, aggressive. Some of my personal least favorite terms are "noncompliant" or "refuses". But I want to push back gently: are they truly noncompliant, or are they simply unable to remember their weight-bearing precautions? Are they refusing, or do they just not want to do this particular thing right now? Sometimes we do not want to do things either.

I attended a conference a bit over a year ago that let attendees choose their own path through the sessions, and one session caught my eye because it focused on communication with people living with dementia. The title was, To Catch a Thief. The speaker was clearly an expert with good intentions, but the content was, honestly, a little misguided. They used the phrase demented person. They told attendees to look for wet spots on the floor around someone. They said the staff put people to bed too early. They referenced a famous actor who had died by suicide after a diagnosis of dementia or Parkinson's, referring to Robin Williams. The harm in that room was real. This is what was shared with learners, and it reinforced exactly the stereotypes we are working to dismantle here today. If we are asking others to change, we have to lead that charge ourselves, and we have to keep learning so we can keep doing better. Words carry real weight, and sometimes that weight is heavy.

Language should uplift, dignify, and respect the people we support. Language shapes how people are seen, understood, and supported. So how do we maximize communication to understand someone's wants and needs? Avoid yes-or-no questions because, at some point in the progression of dementia, a person loses the ability to reliably answer them. Give choices instead: this or that, this or something else. Would you like water or coffee? Coffee, alright, sugar or cream? Letting someone choose gives them a genuine sense of control. I do this constantly, dementia or not, because in a hospital setting, especially, people so often have very little control over anything happening to them. So I offer: water or juice, room temperature or cold, graham cracker or saltine. It gives them a small but real sense of agency, where they usually have very little.

Let us look at specific language shifts. Vague versus specific: "Do you remember?" quizzes someone, while "I remember when" invites them in without pressure. "What do you want to eat?" is open-ended and can overwhelm, while "Would you like chicken or beef?" offers a manageable choice. "Do you want to go to the bathroom?" can invite a reflexive no, while "let's go to the bathroom" moves forward together. "Is she your daughter, remember?" quizzes again, while "this is Mary, your daughter" simply informs. "What's my name?" quizzes and can embarrass, while "hi, it's Laurie, your speech therapist" or "hi, it's your son John" offer the information freely. Quizzing rarely gets us anywhere good.

Let us look at word choices more broadly. A dementia patient becomes a person living with dementia. Mama, honey, or sweetie becomes the person's preferred term of address. I always introduce myself and ask what they would like to be called, because with retrogenesis in play, their married name may no longer mean anything to them; calling someone "Mrs. Smith" using a married name may draw a total blank. A noncompliant resident becomes a person who doesn't understand. A difficult patient becomes a person who is struggling. Difficulties or problems become concerns. Refusing becomes making a choice. Noncompliance becomes an inability to follow directions. An adult brief or diaper becomes a Depends, or simply their brief. Bib becomes a napkin or clothing, a protector. Thickened liquids become a specific drink, like apple juice. Puree or slop becomes the specific food: green beans, beef, or chicken. Coloring becomes artwork. Locked unit becomes memory support. Facility becomes community. Adult daycare becomes an adult day program.

We should also avoid the sitter, the invisible patient, and those affected by dementia, replacing them with an advocate and shifting steadily from carer or caregiver toward care partner. Using the right verbiage reflects the relationship between the person living with dementia and the care partner.

This extends to our documentation, too, and it is worth being direct about that, since charting is where many of our language choices are permanently recorded. If a person declines to participate in a session, there is nothing wrong with charting that plainly, "person living with dementia chose not to participate in therapy today," in the same way we would document treatment withheld for any other person. We do not need euphemisms, and we do not need judgment either. We simply describe what happened using person-centered language, the same language we are using out loud in the room.

I also want to address something that comes up constantly: how do we talk with someone about their own diagnosis, especially when we suspect it but it has not been formally named? I do not typically bring up the word dementia unless I already know the person has received that diagnosis, or unless they bring it up themselves. And here is the thing, some days a person may know they have it, and other days they may not, because this disease is fluid in exactly that way too. The best window for having a direct conversation about the diagnosis and its implications is early, in those earlier stages, when a person is still able to participate meaningfully in decisions about their own future, their care preferences, their finances, and their long-term wishes. That is the time to have those conversations, while they can still help guide them. Outside of that window, I focus far more on what a person can still do, and I let them lead the conversation about their diagnosis on any given day, meeting them exactly where they are that day, with the fluidity of the disease always in mind.

Ways to Connect

A few concrete ways to connect: positive starters like "you're so good at this" or "I could really use your help." Validation, because repeating back what someone says tells them they have been heard and valued. Taking a timeout or a pause when things are not going well, and it is genuinely okay to say "I'm sorry," even if you did not do anything wrong, because it validates their experience. And going smaller, simpler, and shorter in our language, remembering that one in four words may already be slipping past them.

Validation opens the door to calm. Think of validation as saying, "I hear you," "I understand," "you're not alone," and remember that words and tone both matter here. Sometimes it is genuinely okay to match someone's tone. If they say, "I am so angry," you can respond, "I can see that you are so angry," and then gradually bring your own tone down; they will often follow you there. Repeating someone's words back to them can be a form of validation, but the real power comes from matching both their words and their tone, because that combination tells them, "I can tell this matters to you," and meets them exactly where they are. That acknowledgment lowers stress hormones, reduces resistance, and opens the door to trust.

It is worth noting how counterintuitive this can feel in practice, especially for those of us trained to de-escalate by staying calm and even-keeled no matter what. Matching someone's emotional tone, briefly and intentionally, is not the same as losing your own composure. It is a deliberate clinical choice, meeting a person in the emotional register they are actually in, rather than asking them to first climb up or down to meet you in a calmer one that feels foreign to what they are experiencing. Once they feel matched, once they feel truly heard, the tone naturally starts to soften, and you can guide it down together. Trying to bring calm to someone before they feel heard often backfires, because it can come across as dismissive, as though their feelings do not deserve the response they are giving.

To summarize the communication tips: prioritize the person, not the condition. Use person-first language. Be sensitive to others. Be aware of cultural differences. Use a person's preferred terms. Choose words that match the situation. Use inclusive language, "us" rather than "them." Use simple language that is easy to understand. And remember that gestures and facial expressions are powerful communicators in their own right, and they must match the message we are actually sending.

Actions Matter

When we partner with someone, we are invested, we are collaborating, and we are in a relationship, and as a result, the care we provide reflects a we are in this together mentality. 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 to those living with dementia. This is a small word shift, but it is an important distinction that honors the values and preferences of the person we are caring for.

Caregiver versus care partner comes down to a handful of concrete contrasts: providing care to someone versus providing care with someone, jumping in and getting a task done versus asking permission to get the task done, focusing on an agenda because we have things we need to accomplish versus focusing on the person's needs and keeping our agenda in our back pocket, and going in with "I know what's best for you" versus a genuinely collaborative approach.

Before we act, we want to assess the situation. Are they tired? Are they overstimulated? Are transitions feeling confusing or rushed? Are they looking for something familiar? Do they need comfort rather than correction? Are we responding to their emotion, or are we trying to fix the behavior instead of bringing calm and connection? When something feels off, it can help to pause, assess the environment and the situation, and to ask honestly whether we might be part of the problem.

The 7-38-55 rule reminds us that the content of our words is only as powerful as our delivery. Just 7 percent of communication is the actual spoken word, 38 percent is tone of voice, and 55 percent is body language. Are we changing our message through posture, vocal tone, and hand gestures without even realizing it? Think back to the hearing discussion earlier: when I kept getting louder and louder, what did that actually look like? Shouting. The 7-38-55 rule is a real thing we need to keep in mind every time we walk into a room.

A few practical tips regarding action: communicate interest through nonverbal cues. Sit or stand at eye level, since standing over someone can look and feel like yelling at them. Approach from the front, since their visual field changes mean approaching from behind or the side can genuinely startle them. Avoid sudden movements, and come toward them slowly. Watch your own facial expressions, and try to read theirs in return, since nonverbal communication may be their primary channel now. Visual prompts, cards with pictures or physical items, can help someone make a choice more easily. And encourage whatever the person living with dementia is still able to do and remains interested in, such as drawing, singing, dancing, and music. Above all, help them feel safe and supported.

Reminiscence is another powerful way to connect, again without asking "do you remember," but simply by inviting shared memory: old photographs or albums, favorite music, familiar recipes, meaningful scents, books, magazines, treasured objects, and animals, including robotic or lifelike animals and dolls. These tools can spark emotional recognition and connection even when verbal memory has faded.

Our actions matter in how we move through a cueing hierarchy: visual first, then verbal, then touch. We enter someone's visual field, offer a simple verbal greeting, and extend a hand for a handshake; if they take it, that is their way of granting us permission to enter their space. Because of those visual changes we discussed, we want to get into a person's visual field, gain their attention before initiating communication, since jumping straight into information without that step means we have already lost them, and then face them directly, speak to them clearly, and offer that handshake.

Let us also be honest about the reality of a typical day. Staff carry large workloads and rarely have enough time to get everything done. Frontline staff often lack the training they need to communicate effectively with the people they support. So task completion becomes the focus, rather than the person, and that is exactly where the breakdowns happen. It matters to focus on the person rather than on the task that needs to be completed. A shower schedule built around individual preference, rather than room number, places the person before the task. Calling someone "a feeder" versus saying "I am helping this person eat" puts the task before the person. Our agenda may get the job done, but it does not account for the individual's actual desires. Place the person before the task, and life gets easier, not only for the person living with dementia, but for us as care partners, too.

Sundowning

Our actions matter enormously when it comes to sundowning, too, because the moment we say, "Oh, it's just sundowning," our thinking stops. The label becomes the answer, and the person disappears behind it. I want you to picture two paintings, created by the same resident on the same day, one completed in the morning and the other in the afternoon. The difference between them is a gentle, visible reminder of how much energy and focus it takes to get through a day, how a person shifts as the day wears on, and how tired a brain can genuinely become. Choosing the right activities for the right time of day matters enormously. When we match tasks to someone's natural rhythm, we set them up for success, and honestly, it makes our own work easier too.

Connection is the energy created between people when they feel seen, heard, and valued. Connection brings cooperation. When we connect, tasks become easier, resistance softens, relationships strengthen, and everyone involved feels more successful.

What Am I Trying to Communicate?

I want to walk through a set of statements I came across while researching this topic. I am not calling out the author by name, and I believe the intent behind these statements was good, but the wording rubbed me the wrong way, and I think it is worth sitting with why.

Repeating the same question again and again is often described as a way to test your patience. Pretending to have more pain than they actually do, described as knowing that saying "it hurts" brings comfort. Crying or whining loudly for no clear reason. Getting angry or starting arguments. Clinging to one person constantly, described dismissively as neediness. Faking confusion in front of strangers or visitors is described as a way of drawing attention or sympathy. Refusing food or medication. Making up stories that did not happen. Dressing improperly or removing clothing in public. Wandering off without warning.

What rubs you the wrong way about these? Take a moment to think about how you might reframe each one. I suspect some of these made you cringe a little, and I hope that, with everything we covered today, you were able to look at each statement, recognize where the language falls short, and come up with something better. When we know better, we can do better.

What all of these moments are really about is messaging. Put your detective hat on and ask what is the why behind the words and actions someone is trying to communicate to you. Are they trying to connect? Are they in pain or experiencing emotional distress? Are they feeling lost, afraid, or insecure? Do they need the bathroom, or are they hungry or thirsty? Is the environment over- or understimulating? Are they hot, cold, tired, or ready to get up? Are they simply confused? The possibilities are genuinely endless, and it is our job to stay curious rather than settle for the first label that comes to mind. Dementia does not rob someone of their dignity. It is our reaction to them that does.

Repeating the same question again and again is often a signal of an unmet emotional need, a search for reassurance, or genuine anxiety about something they cannot quite name. Saying "it hurts" repeatedly may reflect a real, undertreated physical need, or it may be one of the few phrases that reliably brings them comfort and attention when they need connection. Crying or whining without an obvious trigger is almost always communicating something, discomfort, loneliness, or overstimulation that simply has not found words yet. Anger or arguments are frequently a response to feeling dismissed, rushed, or misunderstood, not an intentional choice to create conflict. Clinging to one person is very often rooted in insecurity or fear, a search for the safety of a familiar face in an unfamiliar or overwhelming moment. What looks like faking confusion in front of visitors may reflect a genuine spike in disorientation caused by unfamiliar faces and an unfamiliar energy in the room. Refusing food or medication is frequently one of the last remaining ways a person can exercise choice and control, and deserves to be honored as exactly that. Stories that did not happen may reflect a blending of memories across time, an attempt to make sense of a confusing gap rather than a deliberate untruth. Dressing improperly or removing clothing may point to physical discomfort, temperature sensitivity, or a tag or seam that has become genuinely unbearable. And wandering off without warning is so often, at its core, about wanting to be seen, to have purpose, or to be cared for in a way the current moment is not providing.

Interprofessional Reflection and Overcoming Barriers

How does this course content apply to your work as part of a broader healthcare team? I imagine you already sense that it applies quite a bit. Where do you see opportunities for interprofessional collaboration in your own setting? It really does not matter what setting you work in; there is real collaboration to be had here.

A barrier, in this context, is anything that prevents effective collaboration across disciplines. One of the biggest barriers we face in this course's content is our own words and actions, which can shape thinking and lead to bias and labeling, whether intentional or not. So what strategies can we use to overcome these barriers? This course has offered several ways to shift how our words and actions show up day to day: doing regular pulse checks on ourselves, co-treating alongside other disciplines, effective modeling, return demonstration, and having crucial conversations when they are needed to raise the bar for service delivery and to promote genuinely positive interactions across the entire team.

Let me make this concrete. A pulse check might be as simple as pausing for ten seconds before entering a room and asking yourself what tone you are about to bring in with you. Co-treating might mean scheduling a joint session with nursing or activities staff specifically so that everyone sees, in real time, which approach actually works for a particular person, rather than relying on a written note that inevitably loses nuance in translation. Effective modeling means letting a newer staff member or a family member watch you use person-first language and a calm approach in the room, rather than simply telling them to do it. Return demonstration means asking the same staff member or family member to try it themselves while you are still there to support and make adjustments. And crucial conversations mean being willing to gently correct a colleague who says "she's just being difficult again" in the hallway, not to shame them, but to bring the same curiosity we are asking them to bring to the person living with dementia into that conversation as well. None of these strategies requires additional time in the day so much as a shift in how we use the time we already have.

Summary

It is about changing perceptions. Remember, the person living with dementia is not giving you a hard time. The person living with dementia is having a hard time. And there is one person in this relationship who has the power to change. It is us.

So it is time to evolve. Do we enable people living with dementia to make choices that shape their own day, even in small ways? Do our environments and routines flex around individual rhythms, or do we simply fit people into ours? Do we see their communication and self-presentation not as challenging, but as expressive, meaningful, and worthy of respect? Are we doing to, or are we doing with, and are we genuinely trying to figure out what matters most to someone, following their lead through our words and actions at every level?

It is about evolving, about deepening our own understanding. It is about seeing personhood not as something we protect from a distance, but as something we actively follow. When care is truly person-led, we stop leading people's lives for them, and we start following their lead in living well, with dignity and meaning.

Before we close, I want you to think of two concrete takeaways to support how words and actions matter in caring for those living with dementia. Consider a recent interaction where the words or approach could have gone differently, and think about what you would change now, knowing everything we covered today.

Let us tie this back to where we started. We talked about three ways our words and actions matter and shape the outcome of an interaction: through the specific language we choose, person first, choice based, free of labels and stigma; through our nonverbal presence, tone, posture, eye level, and approach; and through the small, consistent actions that build trust over time, validation, routine, and genuinely doing with rather than to or for. We talked about common behaviors, repetitive questioning, wandering, refusing care, and what each one is very often communicating underneath the surface: an unmet emotional need, a search for purpose or safety, a last available form of choice and control. We talked about how occupational therapy practitioners support both the person living with dementia and their care partners through the PEO model, environmental modification and safety, sensory-based and cognitively engaging activities, and direct, practical care partner education and support. And we talked about evidence-based principles for interprofessional collaboration, shared language, shared observation, pulse checks, co-treating, and open, honest conversation across every discipline involved in someone's care.

Caring for someone living with dementia is not easy, but it is an honor. Our words carry weight. Our actions carry weight. And every single day, we get to decide how we use both.

References

See additional handout.