There is a simple truth we don’t say often enough in dementia care.
Dementia behaviors are communication, not defiance.
We, the sapphire brains, can choose.
Amber and ruby brains cannot.
And yet, far too often, we expect them to.
A Story We Need to Pay Attention To
I’ve been working closely with a family whose mother experienced a noticeable decline following shingles.
More pain. More confusion. Long stretches of sleep and very little engagement. In response, medications were layered in, gabapentin for nerve pain, lorazepam for anxiety. Together, they dulled her world so much that engagement nearly disappeared.
She wasn’t “resting.”
She was disappearing.
When the gabapentin was stopped, her alertness returned in flashes. The contrast was striking. One day she lay in bed, screaming when touched, unable to tolerate basic care. The next day she was sitting up, eating with others, walking, speaking clearly, present again.
Same woman. Different demands. Different chemistry.
And still, the solution offered was more medication. This is where instinct matters.
Her screaming did not happen randomly.
It happened during care. Sometimes it appeared when things moved too quickly, when her body was being repositioned before her nervous system was calm, or when the environment demanded a sapphire brain state while she was living squarely in amber or ruby.
Holiday plans, schedules, and all the good intentions that come with them were asking more than her brain could give.
Distress Is Communication
When someone living with brain change screams during care, it is not defiance. It is communication.
“I’m scared.”
“This is happening too fast.”
“I need you to slow down.”
And here’s the part we miss far too often.
When food or drink was placed in her hands, her pain softened. Gradually, her body relaxed and the agitation eased.
Not because the pain vanished, but because her focus shifted. Her brain anchored to something concrete—a familiar rhythm that helped regulate her nervous system.
That’s not coincidence. That’s neuroscience.
When Quiet Doesn’t Mean Better
Yet instead of adjusting care, pacing, approach, or expectations, the answer offered again was sedation.
This is not uncommon. Many well-meaning professionals are simply not trained deeply enough in dementia care to recognize the difference between behavioral expression and psychiatric need.
Behaviors get labeled, medications get added, and eventually the person living with dementia becomes quieter.
Not necessarily better. Just quieter.
We Are the Ones Who Can Adapt
Here’s the reframe that matters.
People living with brain change are doing the very best they can with the brain they have today.
They are not choosing this. What looks like resistance is often fear, confusion, or overwhelm.
We are the ones with choices.
We can slow down and meet them where they are.
Sometimes the environment needs to change instead of the person.
Curiosity often serves us better than convenience.
When a family’s instincts say, “Something isn’t right,” that matters. When families start noticing patterns—times of day, changes during care, moments when things seem easier or harder—that matters.
Listening to those instincts is not defiance. It is advocacy.
Continue the Conversation
Advocating for someone you love can feel lonely, especially when you’re trying to make sense of changes that don’t always fit neatly into a checklist.
Inside the Save Our Sanity Society monthly newsletter, I share insights, real stories, and practical ideas to help care partners navigate aging and dementia with more clarity and less overwhelm.
Subscribe to the newsletter here
Relationship Before Routine
Dementia care isn’t about getting through the task.
It’s about supporting the nervous system and protecting the relationship.
Relationships matter more than routines.
And the goal is not compliance, but comfort.
We don’t need to fix amber and ruby brains. We need to adjust our sapphire ones.
Because we can.
And they are counting on us to do exactly that.
Support for Care Partners, Too
People living with brain change are doing the very best they can with the brain they have today.
And as care partners, we deserve support too.
The Care Partner Membership was created to provide structure, education, and encouragement for families navigating aging, dementia, and difficult decisions.
Whether you’re just beginning or looking for more in-depth guidance, there are different levels of support designed to meet you where you are.
Explore the Care Partner Membership
P.S. When you know your agenda, get connected, but do not show your agenda, the outcome and experience is typically successful instead of painful.
Try This Instead
(For When Our Agenda Becomes Louder Than Theirs)
When distress shows up during care…
Instead of this:
- Rushing to finish the task
- Explaining “why we need to do this now”
- Adding medication before adjusting approach
- Assuming resistance or refusal
Try this instead:
- Slow your pace before you touch, get their permission first
- Make eye contact and use their name
- Offer one step at a time
- Reduce noise, movement, and extra people
- Pause and ask, “What might feel scary right now?”
- Shift focus with food, drink, music, or a familiar rhythm
Remember:
Behavior is communication. If someone is distressed, their nervous system needs support, not correction.
Sapphire brains can adjust. Amber and ruby brains cannot.
Looking Ahead Before a Crisis Forces the Decision
Many families don’t realize they’ve already started making care decisions until urgency takes away their options.
That’s exactly why I created Making the Right Move.
This printed guide was designed to help families better understand senior living options, avoid common mistakes, and feel more confident before important decisions become overwhelming.
You simply cover shipping and handling, and we’ll send the guide directly to your home.
Get your copy of the Making the Right Move guide.
Your partner in care,
Shelley
Have you experienced something similar? I’d love to hear from you.
Feel free to share your thoughts, observations, or questions in the comments below. Your experience may help another family feel a little less alone.
