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You Can’t Advocate for Someone When You Don’t Know What’s Going On: Communication in Memory Care

Communication in memory care is not a customer-service extra. When someone living with dementia can no longer reliably explain what happened during the day, what they ate, why they were frightened, or what changed, the family often becomes an essential part of understanding and advocating for that person.

I was reminded of this recently during a conversation with a gentleman whose father lives in a large memory care community.

He was very sharp and very direct, which I appreciated.

“They keep telling me my dad is problematic,” he said.

His father was apparently wandering and exit-seeking.

So I asked the question I almost always ask when someone describes a dementia “behavior” to me:

“Tell me what he’s actually doing.”

That turned out to be much more useful than the labels.

His dad sometimes walks into other residents’ rooms. He has dementia and gets confused about where he is, so that made sense to me.

And the “exit-seeking” was interesting. His father apparently believes he’s staying in a hotel. He walks to the front desk, tells the person there that he’s ready to check out, and asks to go home.

Maybe we call that exit-seeking. But knowing exactly what he is doing gives us much more information than the label does. He isn’t necessarily trying to bolt through a secured door. Within the reality he believes to be true, he may be doing something perfectly logical: checking out of a hotel when he’s ready to leave.

What struck me most, though, wasn’t the terminology. His son didn’t really know what was happening.

When Communication in Memory Care Becomes a Barrier to Advocacy

His son lives locally. He visits often. He is involved in his father’s life and clearly wants to advocate for him.

Yet he felt as though he was getting labels instead of useful information.

His father’s brother was even planning to stay with him for a week, in part so the family could observe what was actually happening and report back.

Think about that.

A devoted family member should not have to conduct his own investigation to understand what his father’s daily life looks like.

This is something I hear from families more often than I wish I did. They visit. They call. They attend meetings. They are trying very hard to stay involved. Yet they still don’t feel they understand what is happening between visits.

And if your parent can no longer reliably tell you, that information has to come from somewhere.

“Problematic” Isn’t Enough Information

Words like “problematic,” “difficult,” “wandering,” “exit-seeking,” “agitated,” or “refusing care” may be useful shorthand between professionals. But they are not enough information for a family trying to understand what is happening.

If Dad is “exit-seeking,” what does that actually look like?

·        Is he repeatedly pushing on secured doors?

·        Is he pacing near an exit?

·        Is he calmly asking someone to take him home?

·        Does he believe he’s at work and his shift has ended?

·        Does he think he’s in a hotel and wants to check out?

·        Does it happen at a particular time of day or after a particular trigger?

Those distinctions matter because behavior in dementia often makes more sense when we understand the person’s perspective.

The same is true if Mom is described as refusing a shower. Did she simply say no? Did she become frightened when an unfamiliar caregiver entered her room? Was she rushed? Does she usually shower happily at a different time of day?

A label tells you what someone called the behavior. A description helps you understand the person.

No, You’re Not Asking for Too Much

There is a sentence I hear surprisingly often from adult children:

“Maybe I’m asking for too much, but…”

And almost every time, I want to stop them right there.

No. You’re not asking for too much.

I spoke with another daughter whose mother had lost around 20 pounds. Her mother was already a small woman, so the weight loss was significant and understandably frightening.

The daughter kept asking a very basic question:

“Is my mom eating?”

She was being told yes.

But then she would visit and see food still sitting on the plate. Her mother continued losing weight. She asked for clearer information and tried to arrange meetings because what she was being told did not seem to match what she was seeing.

Eventually, like many deeply involved family members I speak with, she began questioning herself.

Was she being difficult? Was she calling too often? Was she expecting too much?

Wanting to understand why your mother has lost 20 pounds is not asking for too much.

Wanting to know whether your father is eating, sleeping, taking his medications, participating in daily life, or behaving differently is not asking for too much.

Those are exactly the kinds of things you need to understand if you are going to advocate for someone who may no longer be able to reliably explain what is happening himself.

What Families Should Reasonably Expect From a Memory Care Community

This does not mean families need a minute-by-minute report.

Caregivers need to care for residents. They cannot spend their shifts texting or answering phone calls. There are reasonable boundaries around communication, and there are privacy considerations when other residents are involved.

But there is an enormous amount of space between constant reporting and being kept in the dark.

An involved family should be able to get meaningful information about questions such as:

·        Is Mom actually eating and drinking adequately?

·        Has her appetite or weight changed?

·        Is Dad sleeping reasonably well?

·        What exactly happened when you say he had a behavior?

·        Is she participating in daily life or spending most of her time alone?

·        Has his mobility changed?

·        Are caregivers having new difficulty with bathing, dressing, toileting, or medications?

·        Has something changed from her usual baseline?

·        What approaches are working well right now?

·        If there is a concern, who can I speak with who actually knows what is happening?

You may not get every answer instantly. But there should be a path to an answer, and there should be someone who can help you understand the larger picture.

Communication Is Part of Dementia Care

I think it is a mistake to treat family communication as though it is simply a hospitality feature.

When someone has dementia, the family may hold information that caregivers need, while caregivers hold information the family needs.

A caregiver knows what happened at breakfast this morning. A daughter may know that Mom has eaten oatmeal every morning for 30 years and that suddenly refusing it is unusual.

A caregiver may notice that Dad asks to go home every afternoon. His son may explain that Dad worked until 5:00 p.m. for decades and still believes he needs to leave at the end of the workday.

Neither person necessarily has the whole picture alone.

Good dementia care works better when families and caregivers aren’t standing on opposite sides trying to extract information from one another. They should be sharing what they know about the same person.

Why Knowing the Caregivers Changes the Conversation

This is also why caregiver consistency matters so much.

If you ask, “How has Mom been eating this week?” someone who has actually sat beside her at breakfast several mornings can give you a different kind of answer than someone simply reviewing a chart.

If you ask, “Is Dad more confused lately?” a caregiver who knows what Dad looked like two weeks ago has a baseline for comparison.

The longer caregivers know a resident, the more context they accumulate: routines, preferences, patterns, triggers, subtle changes, and the little things that may never make it into a formal note.

Familiarity creates information. And access to the people who have that information makes it much easier for families to advocate intelligently instead of guessing.

How We Think About Communication at The Sanctuary

In our homes, families often know the caregivers personally. They know our nurses. They know our management team. They know who operates The Sanctuary.

Families may have direct contact information for the people involved in their loved one’s care. That does not mean every question gets an immediate answer or that caregivers should be on their phones throughout the day.

It means there should not be a giant institutional wall between the family and the people who actually know the resident.

If something changes, I want families to know who to ask.

If they are worried, I want them to be able to say so.

And if what we are seeing is different from what they are seeing, I want us to talk about it.

Families aren’t an inconvenience to the care process. When the relationship is healthy, they’re part of the care team.

What to Ask About Communication When Touring Memory Care

Families spend a lot of time asking about rooms, activities, meals, and staffing ratios when they tour. I would add communication to that list.

Ask:

·        Who will be my primary point of contact?

·        If I have a question about something that happened today, can I speak with someone who was actually there?

·        How are meaningful changes in appetite, weight, behavior, sleep, mobility, or medications communicated to families?

·        How often do families receive updates?

·        How do caregivers share information with one another between shifts?

·        If I raise a concern and still don’t understand what is happening, who is the next person I can speak with?

·        Will I have opportunities to know the caregivers who spend the most time with my parent?

And pay attention to how those questions are received.

You are not looking for unlimited access or perfect communication. You are looking for a culture that sees thoughtful family involvement as useful rather than irritating.

One Thing I’d Tell My Own Family

If I ever have dementia, please ask questions.

If someone tells you I’m “having behaviors,” ask what I actually did.

If they tell you I’m eating but I’m losing weight, keep asking.

If something about me has changed, don’t assume someone else has noticed.

And if you start feeling embarrassed because you’ve asked the same question three times and still don’t understand what is happening, don’t decide that you’re being difficult.

You are my eyes and ears when I may no longer be able to tell you what’s happening myself.

I hope the people caring for me see you as their partner – not as a problem to manage.

Because you can’t advocate for someone when you don’t know what’s going on.

Key Takeaways

·        Communication in memory care is an important part of helping families advocate for someone who may no longer be able to reliably explain what is happening.

·        Labels such as “problematic,” “wandering,” or “refusing care” are less useful than specific descriptions of what actually occurred.

·        Families do not need minute-by-minute updates, but they should be able to understand meaningful changes in eating, weight, behavior, sleep, mobility, medications, and daily functioning.

·        Caregiver consistency improves communication because caregivers who know a resident have a baseline for recognizing changes.

·        Families and caregivers often hold different pieces of the same puzzle; good dementia care brings that information together.

·        A family member asking thoughtful questions should be treated as a partner in care, not as a problem to manage.

Frequently Asked Questions

How much communication should families expect from memory care?

Families should not expect continuous updates throughout the day, but they should have a clear point of contact and a reliable way to learn about meaningful changes in health, behavior, appetite, weight, mobility, medications, and daily functioning.

What should I do if a facility says my parent is “having behaviors”?

Ask for a specific description. What happened? When did it happen? What was happening immediately beforehand? How did caregivers respond? What helped? Specific information is much more useful than a label when trying to understand behavior in dementia.

Am I asking too much if I frequently have questions about my parent?

Thoughtful questions about meaningful changes in your parent’s condition or care are reasonable. Communication also needs practical boundaries so caregivers can focus on residents, but families should not be made to feel unreasonable for trying to understand significant concerns.

Why does caregiver consistency improve family communication?

Caregivers who repeatedly care for the same resident learn that person’s normal routines, preferences, behaviors, and baseline. That makes it easier to notice changes and give families meaningful context rather than simply report isolated events.

What communication questions should I ask when touring memory care?

Ask who your point of contact will be, how changes are communicated, whether you can speak with people who directly care for your parent, how information passes between shifts, and what happens if you raise a concern that is not resolved.

You May Also Find These Helpful

Why People with Dementia Wander

Wandering is often more complicated than simply trying to leave. Read this to understand what different walking and exit-seeking behaviors may be communicating and why the distinction matters.

How We Approach Challenging Behaviors

A behavior label rarely tells the whole story. This article explores how understanding triggers, unmet needs, and the resident’s perspective can lead to more compassionate responses.

The Caregiver Equation: Enough People + the Right People + the Same People

Communication is only as useful as the knowledge behind it. This companion article explains why caregiver quantity, quality, and consistency shape how well caregivers can truly know a resident.

Have Questions About Your Loved One’s Care?

If you’re trying to understand changes you’re seeing in a loved one with dementia or comparing care options in Charlotte, contact The Sanctuary. We’re always happy to talk through what you’re seeing and the questions worth asking.

Memory care family communication about a resident's eating habits between her daughter and a consistent caregiver.

Why People with Dementia Wander (and Why It Isn’t the Same as Exit Seeking)

One of the questions I hear from families all the time is, “I’m worried Mom is going to wander away.”

Understanding why people with dementia wander is important because wandering and “exit seeking” are not always the same thing. The words are often used interchangeably, but the behavior we see may have very different causes—and understanding the difference changes how we respond.

After caring for hundreds of residents living with dementia, I’ve learned that most people are not simply trying to escape. Much more often, they are trying to solve a problem that feels completely real and urgent to them. They may believe they need to get to work, find their children, go home, use the bathroom, look for a spouse, or simply keep moving because sitting still feels uncomfortable.

When we understand the problem they are trying to solve, we can often respond with empathy instead of simply saying “no.” We can also make better decisions about safety, supervision, routines, and the environment around them.

Why People With Dementia Wander

“Wandering” can sound as though a person is moving aimlessly. In reality, movement in dementia is often purposeful from the person’s perspective, even when the purpose is not obvious to us. The Alzheimer’s Association describes wandering as common in dementia and notes that it can occur at any stage. It also lists signs such as pacing, trying to fulfill former obligations, looking for people from the past, becoming lost in familiar places, or saying they want to “go home” even when they are already home.

For families, the important shift is to stop asking only, “How do we make the walking stop?” and begin asking, “What might this person be trying to do or communicate?” See the Alzheimer’s Association guidance on wandering and dementia for additional safety guidance.

Wandering Is Not the Same as Exit Seeking

A person can walk repeatedly through a house, pace a hallway, move from room to room, or explore a safe outdoor space without necessarily trying to leave. Movement itself is not always a problem. In fact, walking can provide exercise, stimulation, a sense of purpose, and an outlet for restlessness.

Exit seeking is more specific. It describes behavior focused on getting through a door or leaving the current setting. A resident may stand at an exterior door, repeatedly test the handle, pack belongings, put on a coat, or insist that someone is waiting for them.

The distinction matters because the response should match the need. Someone who simply needs to move may benefit from a safe place to walk. Someone who is actively trying to leave requires closer supervision and an understanding of what is pulling them toward the door.

Common Reasons a Person With Dementia May Wander

There is rarely one universal cause. The same person may wander for different reasons on different days.

They are following an old routine

Dementia may weaken recent memory while older habits remain deeply familiar. A retired teacher may believe she needs to get to school. A man who spent forty years leaving for work at 7:30 may become restless around that same time every morning. A parent may think children are waiting to be picked up, even though those children are now adults.

From our perspective, the task does not exist anymore. From theirs, it may feel overdue and important. Correcting them repeatedly—“You retired twenty years ago”—may not remove the urgency. It can simply create a new problem: now they feel that nobody is listening.

They are looking for something or someone

A person may walk through rooms looking for a spouse, parent, child, bathroom, bedroom, purse, pet, or familiar object. If memory and visual processing are impaired, even a familiar environment can become difficult to navigate.

Sometimes the repeated walking is the search itself. Instead of stopping the person, it may help to identify what they seem to be looking for and respond to that need.

They need the bathroom, food, water, movement, or relief from discomfort

Behavior can be communication, particularly when a person can no longer clearly explain what is wrong. Restlessness may accompany hunger, thirst, constipation, urinary urgency, pain, being too hot or cold, fatigue, or the need to use the bathroom.

This is why I do not like treating every episode of wandering as a behavioral problem. Sometimes the most effective intervention is remarkably ordinary: a snack, a drink, a bathroom trip, a walk outside, a quieter room, or attention to pain.

They are bored or under-stimulated

Imagine being told to sit in the same chair for most of the day without understanding why. Many of us would get up too.

Meaningful activity does not have to mean constant entertainment. It can be folding towels, setting a table, watering plants, listening to music, walking outside, looking through photographs, helping prepare food, or simply sitting and talking with someone. The point is to give the day rhythm and purpose.

They are anxious, overstimulated, or trying to get somewhere that feels safer

Noise, unfamiliar people, a crowded room, a change in caregivers, or an unfamiliar environment can increase confusion. A person may move because remaining where they are feels uncomfortable.

This is one reason wandering sometimes increases after a move. The person has lost familiar visual cues and may be trying to orient themselves. Calm repetition, predictable routines, familiar belongings, and consistent caregivers can help the new environment gradually make sense.

They are experiencing changes later in the day

Some people become more restless or confused in the late afternoon or evening, a pattern often described as sundowning. If walking or door-focused behavior reliably occurs at the same time each day, that pattern is useful information.

Rather than waiting for the difficult period to begin, families and caregivers can plan ahead: offer movement earlier, make sure the person has eaten and used the bathroom, reduce noise, improve lighting, and provide a familiar activity or companion during the time when restlessness usually increases.

Start Looking for the Pattern

When wandering becomes frequent, I encourage families to become detectives. You do not need a complicated tracking system. A few notes can reveal patterns that are easy to miss when every episode feels like a separate crisis.

·        What time did the walking or exit-seeking begin?

·        What happened immediately before it?

·        Where was the person trying to go?

·        What were they saying or asking for?

·        Had they eaten, had something to drink, and used the bathroom?

·        Was the environment noisy, crowded, unfamiliar, or unusually quiet?

·        Did a caregiver or family member just leave?

·        Did redirection work? If so, what helped?

·        Is the behavior new, or is it part of an established pattern?

Over time, you may discover that Dad heads for the door every afternoon when he once left work, or that Mom begins pacing whenever the house becomes noisy. Once you see the pattern, you can often intervene before the distress becomes intense.

What to Do in the Moment

The first priority is safety, but the way we create safety matters. Arguing, scolding, physically blocking someone unnecessarily, or repeatedly explaining why their belief is incorrect can escalate distress.

A more useful sequence is often:

·        Approach calmly and from the front so you do not startle the person.

·        Listen for the need underneath the words. Are they looking for someone? Going to work? Trying to get home?

·        Validate the emotion without debating the facts: “You’re worried you’re late,” or “You want to get home.”

·        Meet any obvious physical need—bathroom, food, water, pain relief, rest, movement.

·        Redirect toward something connected to the need: a walk, snack, familiar task, music, photograph, or conversation.

·        Give the person time. Redirection is often less effective when it feels like a command.

For example, if a resident says, “I have to pick up my children,” telling her that her children are fifty years old may leave her confused or embarrassed. A caregiver might instead say, “You’re thinking about the kids. Tell me about them,” and begin walking with her toward the kitchen for a cup of tea. The concern has been acknowledged, and the momentum has shifted without a confrontation.

What Not to Do

Families are often understandably frightened by wandering, especially after a close call. Fear can make us want to control every movement. But eliminating movement is not the goal.

·        Do not assume every instance of walking is dangerous or meaningless.

·        Do not argue repeatedly about facts the person cannot retain.

·        Do not shame the person for trying to leave or for becoming lost.

·        Do not rely on a single lock, alarm, camera, or GPS device as a substitute for appropriate supervision.

·        Do not leave a person with known wandering risk unattended simply because the environment is familiar.

·        Do not ignore a sudden, unexplained change in behavior.

A Sudden Change Deserves Attention

If a person who rarely wanders suddenly becomes markedly restless, agitated, confused, or determined to leave, I would not automatically attribute it to dementia progression.

Sudden behavior changes can sometimes accompany infection, pain, constipation, dehydration, medication effects, sleep disruption, or other medical problems. The Alzheimer’s Association advises seeking medical evaluation when there is a sudden change in behavior so other causes can be considered.

You can read more about changes in confusion and behavior from the Alzheimer’s Association.

Making the Environment Safer Without Making It Feel Like a Lockdown

Good dementia care balances safety with dignity and freedom of movement. The goal is not to make a person feel trapped. It is to make safe choices easier and dangerous exits less likely.

Depending on the person and setting, useful strategies may include:

·        Door alerts or monitoring systems that let a caregiver know when an exterior door opens.

·        Locks or latches positioned appropriately while preserving emergency egress and following applicable safety rules.

·        Good lighting, especially at night and along routes to the bathroom.

·        Clear visual cues or labels for bathrooms, bedrooms, and common spaces.

·        Reducing clutter and confusing visual patterns.

·        Keeping items associated with leaving—such as car keys or a frequently used coat—out of sight when they trigger exit-seeking.

·        Providing safe indoor and outdoor walking routes whenever possible.

·        Using GPS or location-sharing technology as an additional safeguard when appropriate.

·        Keeping a recent photograph and identifying information readily available in case the person becomes missing.

The National Institute on Aging and Alzheimer’s Association both provide practical wandering-safety recommendations for families.

If Someone With Dementia Goes Missing

This is the part families hope they never need, but it is worth planning for before an emergency.

Begin looking immediately. Check the immediate area and places the person may associate with former routines, such as a previous home, workplace, place of worship, favorite store, or familiar walking route. The Alzheimer’s Association recommends calling 911 if the person is not found within 15 minutes and telling authorities that the missing person has dementia.

Families should also consider informing trusted neighbors about the wandering risk, keeping a current photograph available, and having identifying information or a location device appropriate for the person. A plan made calmly in advance is much easier to follow than one invented during a frightening moment.

When Wandering Becomes a Sign That the Care Plan Needs to Change

Wandering does not automatically mean someone needs to move out of their home. Many families can reduce risk with better supervision, environmental changes, routines, activities, and additional caregiver support.

But the care plan deserves another look when the person can no longer safely be left alone, exits the home unnoticed, becomes lost in familiar places, wakes and walks at night, repeatedly defeats safety measures, or requires more supervision than the family can realistically provide.

This is one of the points where our article on the reality of dementia home care may also be helpful. The issue is not whether staying home is good or bad; it is whether the care system still matches the person’s needs.

How We Think About Wandering at The Sanctuary

At The Sanctuary, our Charlotte assisted living homes specialize in dementia care, and we do not view movement itself as something that must automatically be stopped. If a resident wants to walk, we want to understand why and, whenever possible, give that person a safe way to move.

Because each home has only six residents and a 1:3 caregiver-to-resident ratio, caregivers have more opportunity to learn individual patterns: who tends to become restless before dinner, who is looking for a spouse, who needs to walk after breakfast, and who becomes anxious when the house is noisy.

That familiarity can make redirection more personal. The answer is not always “sit down.” It might be, “Come help me set the table,” “Let’s check the garden,” or “Tell me about where you used to work.”

We also distinguish ordinary movement from true exit risk. A resident who enjoys walking through the house is different from a resident who is actively trying to leave unnoticed. Both deserve dignity, but the safety response may be very different.

The Bigger Lesson: Behavior Is Information

One of the most useful shifts in dementia care is to stop seeing every difficult behavior as something to extinguish.

Pacing, searching, asking to go home, repeatedly opening a door, or walking from room to room may be telling us something: “I’m bored.” “I’m uncomfortable.” “I’m looking for someone.” “I don’t recognize this place.” “I have somewhere I believe I need to be.”

We will not always figure out the exact reason. Dementia is complicated, and sometimes even an excellent caregiver cannot identify the trigger. But beginning with curiosity changes the interaction. Instead of asking only how to stop the behavior, we ask what the person might need.

That approach is not just kinder. Very often, it is more effective.

Key Takeaways

·        Wandering in dementia is often purposeful from the person’s point of view, even when the purpose is not obvious to us.

·        Wandering and exit seeking are related but not identical; a person may need safe movement without actually trying to leave.

·        Common triggers include old routines, searching for someone or something, unmet physical needs, boredom, anxiety, overstimulation, and changes in the environment.

·        Look for patterns in time of day, preceding events, words, physical needs, and what kinds of redirection work.

·        Respond first to the emotion or need rather than arguing about facts.

·        Sudden new wandering or agitation deserves attention because medical or physical problems can sometimes contribute to abrupt behavior changes.

·        Environmental safeguards, supervision, meaningful activity, and an emergency plan can reduce risk while preserving dignity and movement.

·        If wandering risk exceeds what the current care arrangement can safely support, it may be time to reassess the overall care plan.

Frequently Asked Questions

Why do people with dementia wander?

People with dementia may wander for many reasons, including following an old routine, searching for someone or something, needing food or the bathroom, experiencing pain or discomfort, feeling bored or anxious, or becoming confused in an unfamiliar environment. The movement may look aimless to an observer while still feeling purposeful to the person.

Is wandering the same as trying to escape?

No. Some people walk or pace because they need movement, stimulation, or something to do. Exit seeking is more specifically focused on leaving through a door or getting away from the current setting. Understanding which behavior is occurring helps caregivers choose a safer and more respectful response.

Should I stop a person with dementia from pacing?

Not automatically. If the person is safe and not becoming exhausted or entering unsafe areas, walking may provide useful exercise and stimulation. The goal is often to create safe opportunities for movement while monitoring for signs of distress or exit risk.

What should I say when someone with dementia says they want to go home?

Try responding to the feeling rather than immediately correcting the facts. Acknowledge that they are thinking about home or missing someone, ask a simple question, offer reassurance, and gently redirect toward a familiar activity, snack, walk, or conversation.

When should wandering behavior concern me medically?

If wandering, agitation, or confusion appears suddenly or changes dramatically from the person’s usual pattern, contact the appropriate healthcare professional. Sudden behavior changes can sometimes be associated with pain, infection (e.g., UTI), medication effects, dehydration, constipation, or other medical issues.

You May Also Find These Helpful

The Reality of Dementia Home Care: When Staying Home Stops Working — How to evaluate whether a home-care system still provides enough supervision, engagement, and support.

Helping a Loved One With Dementia Adjust to a New Home — Why unfamiliar environments can temporarily increase confusion and how families can support a calmer transition.

You Can’t Optimize for Everything When Choosing Dementia Care — A framework for deciding which priorities matter most as care needs change.

Have Questions About Wandering or Safety?

If wandering, exit seeking, or increasing supervision needs are making you question whether your loved one’s current care arrangement is still working, contact The Sanctuary. We are happy to talk through what you are seeing and the questions worth considering as dementia care needs change.

Caregiver gently redirecting a man experiencing dementia wandering inside a luxury residential assisted living home.