When a loved one is living with dementia, some of the changes families see can be confusing, frustrating, and even heartbreaking.
Mom suddenly becomes angry every afternoon.
Dad starts pacing through the house.
A loved one who never raised their voice before begins yelling.
Someone who once enjoyed taking a shower now refuses to get into the bathroom.
It is natural for families to wonder:
Why are they doing this?
But sometimes, a better question is:
What are they trying to tell us?
That is the idea behind Behind the Behavior, a new PansyCare video series focused on helping families better understand dementia-related changes and the needs that may be hiding underneath them.
In the first episode, we sit down with senior dementia advisor Mary Underwood, a dementia care specialist with 37 years of experience supporting individuals and families affected by dementia.
Mary brings another important perspective to the conversation, too. After decades of working professionally in dementia care, her own father was diagnosed with dementia. She has experienced the dementia journey both as a professional and as a daughter.
Dementia Behaviors Are a Form of Communication
When people hear the phrase “dementia behaviors,” they often think about things such as:
- Wandering
- Yelling
- Aggression
- Hitting or kicking
- Refusing care
- Pacing
- Becoming upset or agitated
But Mary points out something important: Behavior itself is not necessarily good or bad.
Helping with the dishes is a behavior.
Participating in a shower is a behavior.
Smiling when a familiar caregiver arrives is a behavior.
So is pacing, yelling, or refusing assistance.
The behavior is often simply communication.
For someone living with dementia, communicating a physical or emotional need may become increasingly difficult. Instead of being able to clearly explain what is wrong, the person may communicate through their actions.
Mary prefers the phrase “behavioral expressions.”
That small change in language can create a major change in perspective.
Instead of asking:
“What is Mom doing wrong?”
We can begin asking:
“What might Mom be trying to express?”
Look Behind the Behavior
There can be many reasons a person with dementia suddenly becomes upset or acts differently.
They may be:
- In pain
- Hungry
- Thirsty
- Tired
- Overstimulated
- Bored
- Frustrated
- Uncomfortable
- Afraid
- Confused
- Feeling rushed
- Feeling unheard
The challenge is discovering which need may be causing the response.
During the episode, we share a real example from our experience providing home care.
For privacy, we call the client Charles.
Charles regularly became angry and frustrated at approximately 10:00 every morning. His caregiver would arrive earlier in the morning, Charles would get up around 9:00, and about an hour later, the frustration would begin.
It would have been easy to simply say:
“That’s his dementia.”
Instead, the team started looking for what might be happening behind the behavior.
One possibility was pain.
Charles was already receiving an over-the-counter pain medication as part of his established routine. The timing of that medication was discussed and adjusted so that it was given according to his care plan closer to when he woke rather than waiting until the period when the discomfort tended to appear.
The change made an enormous difference.
The important lesson isn’t that one particular medication is the answer. Medication decisions should always follow the individual’s care plan and appropriate medical guidance.
The lesson is that pain may be expressed as agitation, anger, resistance, or another change in behavior when a person can no longer easily explain what hurts.
Sometimes the Answer Is Surprisingly Simple
Mary shared another example.
A woman living with dementia regularly became anxious and upset around 1:30 or 2:00 in the afternoon.
At first, it might have appeared to be another dementia-related behavior. But when the family looked more closely at the pattern, they discovered something.
She didn’t eat very much at lunch.
An hour or two later, she was hungry.
She wasn’t necessarily able to communicate:
“I’m hungry. Could I have something to eat?”
Instead, the hunger appeared through anxiety and agitation.
The solution?
Half a sandwich.
Once that unmet need was addressed, the distress improved.
That is exactly why looking behind the behavior can be so valuable.
Not every difficult moment requires a complicated solution.
Sometimes the person may need food.
Sometimes they need rest.
Sometimes they are uncomfortable.
Sometimes the room is too loud.
Sometimes they are afraid.
And sometimes they simply need someone to slow down and approach them differently.
Why This Can Be Harder for Family Caregivers
Understanding behavioral expressions can be particularly difficult when the person living with dementia is your mom, dad, spouse, or another person you have loved for decades.
A professional caregiver may recognize dementia-related changes without having the same emotional history.
Families have memories.
You remember how Mom used to respond.
You remember how Dad handled things.
You remember the person before dementia entered the picture.
So when something dramatically changes, your head may understand that dementia is affecting the brain while your heart says:
“But this isn’t my mom.”
That emotional conflict is very real.
It is one reason dementia caregiving can be so exhausting.
Mary encourages families to focus not only on completing a task, but also on how the person feels while the task is happening and afterward.
Did they feel safe?
Did they feel respected?
Did they feel rushed?
Did they feel included?
Did they feel as though someone was doing something with them instead of to them?
Those questions can sometimes tell us far more than whether the task itself was completed.
Pay Attention to What Goes Right, Too
Looking behind the behavior isn’t only about solving difficult situations. It also means paying attention to the good moments.
Mary calls these moments “glimmers.”
Maybe Mom usually resists bathing, but today she accepted help from one caregiver.
What was different?
Maybe Dad normally becomes anxious during dinner, but tonight he remained calm and engaged.
What changed?
Perhaps one caregiver consistently has an easier time helping your loved one get dressed.
Instead of asking what everyone else is doing wrong, consider asking:
What is this caregiver doing right?
- Maybe they speak more slowly.
- Maybe they give the person more choices.
- Maybe they approach from the front.
- Maybe they joke with them.
- Maybe they don’t rush.
- Maybe their tone makes the person feel safe.
When something works, try to understand why.
Then see whether you can repeat it.
Become a Detective
One of the most helpful things families and caregivers can do is begin noticing patterns.
When a difficult behavioral expression occurs, think about:
- What happened immediately before it?
- What time of day was it?
- Had the person eaten?
- Could they be tired?
- Could something hurt?
- Was the environment noisy or overwhelming?
- Was someone asking them to do something they didn’t understand?
- Were they being rushed?
- Did something similar happen yesterday?
You may not discover the answer immediately.
But patterns can emerge.
And once you identify a possible trigger or unmet need, you can begin experimenting with ways to make the situation more comfortable.
Don’t Forget the Glimmers
Caring for someone living with dementia can easily become focused on problems.
What happened today?
What went wrong?
What are we worried about tomorrow?
Those concerns matter.
But so do the good moments.
- A laugh.
- A song remembered.
- A peaceful meal.
- Holding hands.
- Helping fold towels.
- A successful shower.
- A smile when a familiar caregiver walks through the door.
Those moments matter, too.
They remind us that dementia care isn’t only about managing challenges. It is also about creating moments of comfort, connection, purpose, and dignity.
Give Yourself Grace
Perhaps the most important message from this first episode is for the caregivers themselves:
Give yourself grace.
There is no perfect roadmap for dementia caregiving.
What works one day may not work the next.
You will try things that don’t work.
You will have frustrating days.
You may occasionally realize afterward that there was another way you could have handled a situation.
That doesn’t mean you failed.
It means you are learning how to support someone whose needs and abilities are continually changing.
Watch Behind the Behavior
In future episodes of Behind the Behavior, PansyCare and Mary Underwood will take a closer look at real dementia-care situations families and professional caregivers encounter.
We’ll talk about:
- What happened
- What we noticed
- What we tried
- What worked
- What didn’t
- What families can learn from the experience
- And the “glimmers” that are worth recognizing along the way
Because when we stop seeing dementia behaviors simply as problems that need to be stopped and begin seeing them as expressions that need to be understood, we give ourselves a better chance of discovering what the person truly needs.
Sometimes the answer is complicated.
And sometimes it might be as simple as rest, reassurance, relief from discomfort, or even half a sandwich.
About Mary Underwood
Mary Underwood is a dementia care specialist with 37 years of experience working with people living with dementia across skilled nursing, assisted living, adult day services, private care, and home care settings.
Mary is also the author of The Heart Remembers, a collection of short stories and practical lessons drawn from her decades of dementia-care experience. The book is designed to help families and professional caregivers better understand the person behind the diagnosis and find more compassionate ways to respond to the challenges dementia can create.
PansyCare Is Here to Support Families
Caring for someone living with dementia can bring questions that don’t always have simple answers. At PansyCare, we believe compassionate dementia care begins by getting to know the individual — their routines, preferences, history, abilities, personality, and the things that help them feel safe.
If your family is exploring home care or needs additional support caring for a loved one living with dementia, contact PansyCare to learn how we may be able to help. (860) 212-6433
