If you are caring for someone living with dementia, there is a moment that almost every caregiver reaches.
It usually sounds like this.
“Why are they acting like this?”
“They never used to be like this.”
“I do not understand where this is coming from.”
Sometimes it feels confusing.
Sometimes it feels hurtful.
Sometimes it just feels exhausting.
,
And often, underneath all of it, there is a quieter thought many caregivers do not say out loud.
“Am I doing something wrong?”
I hear this question all the time. In coaching calls. In emails. In conversations that start with a very practical concern but end with emotion sitting just under the surface.
Here is the truth I want you to hear early on.
Most caregivers are not failing.
They are trying to understand behavior without being given the right lens.
When we only look at dementia through behavior or memory, things feel personal and unpredictable. When we look at it through function, many of those same behaviors begin to make sense.
Not easier.
Not fixed.
But clearer. And clarity matters.
Why behavior is usually the wrong place to start
When something changes suddenly or repeatedly, behavior is the most visible thing we notice. It is loud. It interrupts the day. It demands attention.
So caregivers naturally focus there.
They try to correct it.
They try to explain.
They try to reason.
They try to stop it from happening again.
The problem is that behavior is almost never the starting point.
Behavior is the outcome.
It is what happens when the brain is overwhelmed, confused, tired, overstimulated, or trying to protect itself.
Dementia changes how the brain processes information. It affects how much effort something takes. It changes how safe the world feels. It alters how the brain tolerates demand.
When something feels too hard or too fast or too confusing, behavior is how that shows up.
Not because someone is choosing to be difficult.
Not because they are trying to give you a hard time.
But because their brain is no longer able to do what it once did.
This is where so much caregiver frustration begins.
Caregivers respond to behavior as if it is intentional. The brain is responding to function that has changed.
Those two things rarely line up.
Dementia is about function, not just memory
Memory loss gets the most attention when we talk about dementia. It is visible. It is easy to explain. It is what people expect.
But memory is only one piece of a much bigger picture.
Function is what allows someone to move through their day.
Function includes things like:
Starting a task
Knowing the steps involved
Tolerating noise, clutter, or urgency
Understanding what is being asked
Shifting from one activity to another
Feeling safe enough to cooperate
These are the abilities that quietly support daily life.
When dementia affects function, the world becomes harder to navigate even if memory still seems partly intact. A person may remember who you are but no longer be able to process a request quickly. They may know they need help but feel overwhelmed by how that help is offered.
This is why reminders, explanations, and logic often stop working. The brain may no longer be able to keep up with the demand being placed on it.
When caregivers understand this, something important shifts.
They stop asking, “Why will they not just cooperate?”
And start asking, “What might be hard right now?”
That question opens the door to a very different kind of care.
Behavior that start to make sense through function
Let us talk about some common behaviors caregivers struggle with and what might be happening underneath them.
This does not mean these explanations apply every time. Dementia is complex. People are individuals. But these patterns show up often enough that they are worth understanding.
Refusing help
This is one of the most common and painful experiences for caregivers.
Help is offered with good intentions. The need is real. And the response is no.
From a functional perspective, refusal often has less to do with stubbornness and more to do with overwhelm.
Help can require:
Processing language
Understanding intent
Giving up control
Admitting vulnerability
Tolerating physical closeness
When the brain struggles with any of those pieces, refusing help can feel safer than trying to cooperate.
Repeating questions
Repeated questions are exhausting. They can feel endless.
From a functional lens, repetition often reflects difficulty with processing and reassurance, not memory alone.
The brain may not be holding onto information long enough to feel settled. Asking again becomes a way to seek safety or certainty in an environment that no longer feels predictable.
Correcting or reminding rarely helps because the underlying need has not been met.
Anger or agitation
Agitation often shows up when the brain is overloaded.
Too much noise.
Too many words.
Too much pressure to perform.
The nervous system goes into defense mode. The response looks like anger, but underneath it is often fear or confusion.
When caregivers understand this, they begin to see agitation as a signal rather than a personal attack.
Withdrawing or shutting down
Not all behaviors are loud.
Some people pull away. They stop engaging. They seem uninterested or distant.
This can happen when the effort required to participate outweighs the brain's capacity. Withdrawing becomes a way to conserve energy and avoid failure.
It is not a lack of care or connection. It is often a sign that things feel like too much.
Saying no to care that used to be accepted
This can be especially confusing.
Why would something that was fine yesterday suddenly feel impossible today?
Function does not decline in a straight line. Capacity can change day to day, even hour to hour. Fatigue, illness, environment, and stress all play a role.
When caregivers expect consistency, these shifts feel personal. When they expect variability, they begin to adapt instead of pushing through.
Why taking behavior personally is so exhausting
When caregivers interpret behavior as intentional, everything gets heavier.
They start to question themselves.
They replay interactions in their mind.
They try harder, explain more, and push through resistance.
I see this with caregivers all the time.
They are doing so much, yet feeling like nothing works.
The emotional toll builds quietly. Frustration turns into guilt. Guilt turns into self doubt. And the cycle repeats.
Understanding function does not make caregiving easy. But it changes where caregivers place responsibility.
Instead of asking, “Why can they not just cooperate?”
They begin to ask, “What might make this feel safer or simpler?”
That shift alone can reduce so much emotional strain.
A pause caregivers can try today
This is not a technique. It is not a fix.
It is simply a pause.
Before reacting to a behavior, try asking yourself:
What might feel hard right now?
What might feel unsafe or confusing?
What might take more effort than it used to?
You do not need the perfect answer.
The pause itself matters.
It slows the interaction. It softens your response. And it often changes the tone of the moment, even if the situation stays the same.
This lens applies everywhere
Once caregivers start seeing dementia through function, they notice patterns.
Meals.
Mornings.
Appointments.
Transitions.
Family conversations.
The same principles show up again and again.
Understanding function helps caregivers stop fighting behavior and start supporting capacity.
It does not remove grief.
It does not remove hard days.
But it often replaces confusion with clarity. And clarity brings steadiness.
When caregivers start looking at behavior this way, the next question is often, “Okay, but how do I use this in the moment?” That is exactly why I created the caregiver guide.
A gentle next step
If behavior has been weighing on you, I created a short guide to help caregivers reframe what might be underneath it.
It is called When Behavior Feels Personal: A Caregiver Reframe Guide.
It walks through this lens in a simple, gentle way and offers space to pause without pressure.
When you download it, you will also receive my weekly caregiver note. One short email each week offering perspective, reassurance, and support.
Nothing extra.
Nothing overwhelming.
Just a steady place to land.
A Final Word
If you are struggling with behavior, it does not mean you are doing something wrong.
It means you are navigating a condition that changes how the brain works, often without clear guidance or support.
You are learning something no one ever likely taught you.
And that matters.
Notes
- Alzheimer’s Association. (n.d.). Stages and behaviors. https://www.alz.org/help-support/caregiving/stages-behaviors
- Alzheimer’s Association. (n.d.). What is dementia? Symptoms, causes and treatment. https://www.alz.org/alzheimers-dementia/what-is-dementia
- Alzheimer’s Association. (n.d.). Caregiving support and resources. https://www.alz.org/help-support/caregiving
- Alzheimer’s Association. (n.d.). Anxiety and agitation in dementia. https://www.alz.org/help-support/caregiving/stages-behaviors/anxiety-agitation
- Cohen-Mansfield, J. (2001). Nonpharmacologic interventions for inappropriate behaviors in dementia: A review, summary and critique. American Journal of Geriatric Psychiatry. https://pubmed.ncbi.nlm.nih.gov/11739063/
- Caregiver Action Network. (n.d.). Caregiver’s guide to understanding dementia behaviors. https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/
- Alzheimer’s Association. (n.d.). 10 early signs and symptoms of Alzheimer’s and dementia. https://www.alz.org/alzheimers-dementia/10_signs
- Understanding Behavioral Changes in Dementia. (n.d.). Lewy Body Dementia Association. https://www.lbda.org/understanding-behavioral-changes-in-dementia/
Disclaimer
The information provided in this blog is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual’s needs are different, and professional guidance is essential to ensure safety and appropriateness of care.
Want to keep figuring this out together?
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Kind truth. Clear steps. Warm guide.
0 Comments