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By Elle L.

There are countless articles about dementia.

Articles about memory loss.
Articles about confusion.
Articles about wandering.
Articles about brain changes.
Articles about caregiver burnout.
Articles about compassion.
Articles about patience.
Articles about understanding.
All of these conversations are important.

But there is one conversation that rarely happens, and when it does, it is often shut down before it can begin.
It is the conversation about the reality caregivers witness every day.

Before I go any further, let me be absolutely clear.
I am not denying dementia.

I am not denying Alzheimer’s disease.

I am not denying brain damage.

I am not denying cognitive decline.

I am not denying confusion, memory loss, fear, paranoia, or neurological impairment.

I have spent years caring for people living with these conditions.
I have sat beside them, redirected them, comforted them, advocated for them, cleaned up after them, protected them, and loved them.
I know dementia is real.
What I am questioning is the way we talk about it.
More specifically, I am questioning the way we refuse to talk about certain realities that many caregivers repeatedly observe.
One of the greatest misconceptions about dementia is the assumption that awareness is either fully present or completely absent.
Many caregivers know that reality is not that simple.
People living with dementia are not all the same.
Some are profoundly impaired.
Some are mildly impaired.
Some fluctuate from hour to hour.
Some lose memory while retaining social awareness.
Some lose judgment while retaining emotional awareness.
Some lose orientation while still understanding how people around them react.
And some retain enough awareness to recognize exactly how their behavior affects others.
This is where the conversation becomes uncomfortable.
Because many caregivers have witnessed moments that do not fit the public narrative.
We have witnessed residents who behave one way with family and another way with staff.
We have witnessed residents who know exactly which caregiver will give in and which caregiver will not.
We have witnessed residents who create conflict between people.
We have witnessed residents who provoke reactions.
We have witnessed residents who make accusations, create drama, manipulate situations, or test boundaries.
Most importantly, we have witnessed moments when a resident appears fully aware of what they have just done.
Not every patient.
Not every day.
Not every interaction.
But enough.
Enough that caregivers across facilities, private homes, assisted living communities, and memory care units know exactly what I am talking about.
And yet every time this subject comes up, the response is almost immediate.
“They have dementia.”
Yes.
We know.
Nobody knows that better than the caregiver standing in the room.
The problem is that this response often ends the conversation rather than advancing it.
The caregiver says, “She knew exactly what she was doing.”
The response is, “She has dementia.”
The caregiver says, “He was manipulating the situation.”
The response is, “He has dementia.”
The caregiver says, “She smiled after getting the reaction she wanted.”
The response is, “She has dementia.”
The diagnosis becomes the explanation for everything.
The caregiver’s observation disappears.
The caregiver’s experience disappears.
The caregiver’s reality disappears.
And eventually, so does the caregiver’s voice.
This matters because caregivers are not observing these things from a distance.
We are there.
We are present during the difficult moments.
We are present when family members leave.
We are present when the resident does not get what they want.
We are present when boundaries are enforced.
We are present when accusations are made.
We are present when conflicts occur.
We are present when behaviors emerge that never appear during a doctor’s appointment or a family visit.
We are not reading about these experiences.
We are living them.
That does not mean caregivers are always right.
It does not mean every difficult behavior is intentional.
It does not mean every resident is manipulative.
It does not mean every act of aggression is deliberate.
What it means is that caregivers deserve to be heard when they describe what they have witnessed.
Because there is another side of caregiving that rarely gets discussed.
The bruises.
The scratches.
The kicks.
The insults.
The threats.
The false accusations.
The emotional exhaustion.
The constant need to remain calm while someone else loses control.
The expectation that caregivers absorb every emotional impact without ever speaking honestly about it.
Society rightly asks us to have compassion for people living with dementia.
We should.
But compassion should not require silence.
Compassion should not require denial.
Compassion should not require caregivers to ignore their own experiences.
It should be possible to hold two truths at the same time.
A person can have dementia.
A person can also have moments of awareness.
A person can have dementia.
A person can also manipulate a situation.
A person can have dementia.
A person can also understand how to provoke a reaction.
A person can have dementia.
A person can also know exactly which buttons to push.
These truths are not mutually exclusive.
In fact, many caregivers would argue that acknowledging this reality creates a more honest understanding of dementia, not a less compassionate one.
What caregivers are asking for is not permission to stop caring.
We are asking to stop being dismissed.
We are asking for our observations to matter.
We are asking for our experiences to be part of the conversation.
We are asking people to recognize that those who spend the most time with a resident often see parts of the disease that others never witness.
Most of all, we are asking for honesty.
Not the sanitized version.
Not the brochure version.
Not the version that makes everyone comfortable.
The truth.
Because if we genuinely want to understand dementia, we must be willing to listen not only to doctors, researchers, and families.
We must also listen to the caregivers.
The people who were there.
The people who saw it.
The people who lived it.
And the people who are still trying to tell us what they have learned.

I have a dementia client that I care for. I’ve worked with her for a year now as her primary caregiver recently her behavior has become excessively combative, physically, aggressive, and verbally abusive. Today, while in the dining hall, after she finished eating her meal, she chose to get up, walk around the dining room and attempt to touch other people’s plates. Once the staff and I redirected her out of the dining room, she became very angry and frustrated and began pinching me hitting me, stomping on my feet and slamming her walker into my legs. I distracted her and got her to her apartment. I told her we were going to stay there until she felt as though she could behave in a way that was not disruptive or disturbing to the other residents. She wasn’t happy about it, but she understood it was a consequence to her behavior. After having about an hour of quiet time in her apartment, we returned downstairs and rejoined the residents. She was calm for the rest of the day.

I don’t hear much or really anything at all about encouraging time outs for residents that are extremely disruptive, physically aggressive, and verbally abusive. My professional experience has been those behaviors do not stay for any long period of time. Reregulation can happen by simply removing them from a very stimulating environment. I would really like to hear what other people have to say about this. Thank you.