The Caregiver Behind the Care Plan: What Families Have Been Trying to Tell Us About Dementia Care

Families Have Been Saying This for Years

There has been a lot of conversation lately in the dementia care world about “supporting caregivers better.” At the 2026 Dementia Care and Caregiving Research Summit, researchers and healthcare leaders talked about the need to better understand the daily lives of caregivers and bring practical support into real-world settings instead of limiting it to research programs and controlled environments.

As I read about some of the conversations coming out of the summit, I kept thinking the same thing over and over again:

Families have been trying to tell us this for years.

Long before researchers started talking about caregiver burden, implementation science, or real-world interventions, family caregivers were already standing in kitchens at midnight trying to figure out how to make it through another day. They were already noticing patterns. Already adapting. Already trying to explain that dementia care is about far more than memory loss.

I think about my own family a lot when I think about this.

My grandfather had the brightest blue eyes and this mischievous little twinkle that made you feel like he was always in on something. We were close in the quiet kind of way that some grandparents and grandchildren are. We didn’t always need conversation. We made applesauce together. Picked things from the garden. Sat on the porch. He felt steady and familiar to me.

Then dementia entered our lives, and suddenly the adults around me were trying to navigate situations nobody had prepared them for.

My grandfather would try to leave because he needed to get to work at his store. The problem was, the store had burned down years earlier. But in his mind, it was still there. That world still existed for him. He wasn’t trying to be difficult. He wasn’t trying to upset anyone. His brain was trying to make sense of reality using pieces of information that no longer fit together the same way.

Nobody explained that to my grandmother.

Nobody sat her down and said, “His brain is processing time differently now.” Nobody explained why reasoning wasn’t working anymore. Nobody helped her understand that what looked like stubbornness might actually be fear, confusion, memory, sensory overload, or a nervous system struggling to make sense of the environment around him.

She was left to figure it out mostly on her own.

Honestly, I think that is still happening to a lot of families today.

Dementia Care Is About More Than Memory Loss

One of the biggest misunderstandings about dementia is that people still think it is mostly about forgetting things.

Memory changes are certainly part of it. But caregivers know the disease reaches far beyond memory. They see changes in emotional regulation, reasoning, language, sensory processing, sequencing, judgment, attention, and the ability to tolerate stimulation. They see how quickly a noisy room, a rushed interaction, too many choices, or a change in routine can completely alter someone’s ability to function.

Families notice these things long before most systems do.

They notice that mornings tend to go better than evenings. They notice that crowded restaurants suddenly feel overwhelming. They notice that bathing becomes frightening even when the person cannot explain why. They notice that one-step directions work while multi-step instructions lead to shutdown or frustration.

Most caregivers become incredibly observant because they have to.

And honestly, many are doing sophisticated problem-solving every single day without anyone recognizing it.

They are constantly gathering information:
What time of day works best?
What environments calm things down?
What seems to trigger distress?
How much noise is too much?
How much information can the brain process at once?
What changes when fatigue sets in?

Caregivers are continuously adapting, recalibrating, and trying again.

But too often, they are handed instructions instead of understanding.

Caregivers Need Interpretation, Not Just Instructions

I think this is one of the biggest gaps in dementia support.

We give caregivers task lists, safety tips, medication schedules, and communication strategies. Those things matter, of course they do. But many caregivers are quietly trying to answer much deeper questions inside the home.

Why does bathing suddenly feel terrifying?
Why does dinner lead to agitation?
Why can someone follow directions one moment but not the next?
Why does reasoning seem to make things worse instead of better?

Most families are not looking for perfection.

They are looking for understanding.

They are trying to preserve connection while navigating a brain that keeps changing the rules.

That thinking is what eventually led me to create the Wheel of Function Framework™. I needed a way to explain what I had seen both personally and professionally. I needed something that helped caregivers stop seeing every difficult moment as defiance, manipulation, or failure and start asking a different question:

“What might the brain be struggling to process right now?”

That shift changes everything.

Because when caregivers understand function, they often stop blaming themselves so much. They stop assuming they are failing every time a strategy stops working. They begin to recognize that dementia changes how the brain processes sensory input, communication, emotion, sequencing, problem solving, and the environment itself.

And once you understand that, the caregiving approach naturally starts to change too.

Behavior Does Not Tell the Whole Story

One thing I have learned over the years is that behavior rarely exists in isolation.

What we call “behaviors” are often signals.

Sometimes the signal is fear.
Sometimes it is sensory overload.
Sometimes it is exhaustion.
Sometimes it is confusion, frustration, pain, disorientation, or emotional overwhelm.

But if we only focus on stopping the behavior itself, we miss the information underneath it.

I think caregivers understand this intuitively long before many professionals do.

Families know there is usually something deeper happening beneath the surface, even if they cannot always explain it in clinical language. They know the person they care for is not simply “giving them a hard time.” They know something has changed in how the brain is processing the world around them.

And honestly, I think that is why so many caregivers feel unseen in traditional healthcare settings.

Because they are often carrying an enormous amount of observational knowledge that never quite fits into a fifteen-minute appointment.

They are the ones seeing the patterns unfold day after day.

The Future of Dementia Care Must Include Caregiver Insight

One thing that encouraged me about the summit conversations was hearing more discussion around real-world caregiving experiences and practical implementation. I think the field is finally beginning to recognize something important:

Caregivers are not simply carrying out care plans.

They are interpreting changing function in real time.

They are adjusting environments.
Reworking routines.
Simplifying communication.
Reducing overwhelm.
Watching for patterns.
Trying to prevent distress before it escalates.

That is not passive work.

It is complex emotional, cognitive, and practical labor happening every single day inside homes all over the world.

And yet many caregivers still feel like they are expected to figure things out through trial and error while carrying enormous emotional weight at the same time.

I think we need to listen much more carefully to what caregivers have been trying to tell us.

Not just about burnout.
Not just about stress.

But about what dementia actually looks like in daily life.

Because families are often the first people to notice how profoundly the environment affects function. They see how sensory overload changes communication. They see how fear can look like anger. They see how rushing someone whose brain can no longer sequence quickly enough creates distress almost instantly.

That insight matters.

And honestly, I think the future of dementia care depends on taking those lived experiences more seriously.

We Need to Start Listening Differently

For me, this work has never been purely theoretical.

It was shaped by watching people I love try to navigate dementia without a roadmap. It was shaped by watching my grandmother carry enormous responsibility while trying to make sense of changes nobody had properly explained to her. And later, it was shaped again through years of working with patients and families who often felt like they were failing when really they were trying to respond to a brain that was changing faster than anyone had helped them understand.

That is why I believe we need to start listening to caregivers differently.

Not just as overwhelmed family members.
Not just as people implementing care plans.

But as people holding valuable insight into how dementia actually unfolds in everyday life.

Because families notice things long before systems do.

They notice the wobble before anyone else sees the wheel bending.

And I think it is time we started paying closer attention to what they have been trying to show us all along.

Notes

Chodos, A. (2026). Anna Chodos highlights advances in early dementia detection at 2026 NIA research summit. University of California San Francisco Division of Geriatrics. https://geriatrics.ucsf.edu/news/anna-chodos-highlights-advances-early-dementia-detection-2026-nia-research-summit
National Institute on Aging. (2026). 2026 Dementia Care and Caregiving Research Summit. U.S. Department of Health and Human Services. https://www.nia.nih.gov/2026-dementia-care-summit
National Institute on Aging. (2026). 2026 Dementia Care and Caregiving Research Summit program book [PDF]. U.S. Department of Health and Human Services. https://www.nia.nih.gov/sites/default/files/2026-03/2026-Dementia-Care-Summit-Program-Book_508.pdf
Roybal Coordinating Center. (2025, December 3). Dementia care and caregiving research summit and pre-summit listening session. https://www.roybalniaresearchcenters.org/post/dementia-care-and-caregiving-research-summit-and-pre-summit-listening-session
Roybal Coordinating Center. (2026). Dementia care and caregiving research summit. https://www.roybalniaresearchcenters.org/post/dementia-care-and-caregiving-research-summit
Shi, J. M., Wang, K., Yoo, D. W., Karkar, R., & Saha, K. (2025). Balancing caregiving and self-care: Exploring mental health needs of Alzheimer’s and dementia caregivers [Preprint]. arXiv. https://arxiv.org/abs/2506.14196

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