As family caregivers, we often use the word “behavior” to describe the difficult moments—the agitation, the repetitive questions, or the resistance to bathing. However, in the world of dementia care, “behavior” often carries a negative weight. It implies that the person is being “difficult” or “acting out.”
This blog, and the corresponding YouTube video below, explores a more compassionate approach: viewing these moments not as bad behaviors, but as challenging expressions.
Why the Shift in Language Matters
When we shift our mindset from “behavior” to “expression,” we acknowledge a fundamental truth: All behavior is communication. A person living with dementia is doing the best they can with the cognitive tools they have left. They may no longer have the words to say, “I’m overwhelmed by the noise,” or “I’m frustrated because I can’t find the bathroom.” Instead, they express that unmet need through their actions.
Understanding the “Why” Behind the Expression
Dementia causes physical, structural changes in the brain. When we compare a healthy brain to one with advanced dementia, the differences are striking. We cannot expect a shrinking, changing brain to process information the same way a healthy one does.
Common Triggers for Challenging Expressions:
- Environmental Overstimulation: Loud noises, bright lights, or too much activity (like a shift change or a busy household).
- Physical Pain: Often, a sudden change in behavior is a sign of an undiagnosed issue like a UTI, fatigue, or hunger.
- Loss of Control: Being treated like a child or having tasks taken away can lead to frustration and resistance.
- The “Anchor” Effect: Sometimes a loved one shadows you because you are their only source of safety in a world that no longer makes sense.
The ABCs of Assessment
To help navigate these moments, Jamie suggests using the ABC method to become a “caregiver detective.”
| Letter | Category | What to look for | Example |
| A | Antecedent | What happened right before the expression? Was it a loud noise? A change in the room? | I turned on the vacuum, OR It was 30 minutes before dinner, OR I asked him to get in the shower. |
| B | Behavior | The expression itself (pacing, yelling, wandering). | Pacing, repetitive questioning, pushing my hand away. |
| C | Consequence | What happened after? Did our reaction make it better or worse? | I tried to explain why he needed a shower, but he got louder. |
Putting it into Practice: The 5:00 PM Agitation
If your loved one becomes agitated every day at 5:00 PM (often called “Sundowning”), look at the Antecedents. Is the house getting darker? Are you busy cooking dinner and less available? Is the news on the TV too loud? Identifying the “why” allows you to change the environment before the agitation starts.
The Detective Questions
If you notice a pattern in your log, ask yourself these six questions to find the “Why”:
- Who is the person?
Does this behavior link to their past? (e.g., A former pilot trying to “go to work” at the same time every day.) - What is the stage?
Are we asking them to do something too complex for their current brain capacity? - How are they feeling?
Could this be physical pain, a UTI, hunger, or thirst? - What are we communicating?
Is my tone of voice rushed? Am I moving too fast for them to process? - What is the environment?
Is it too loud? Are there scary shadows on the floor? Is it too hot? - What is the timing?
Does this always happen during shift changes, meal prep, or at sundown?
Tips for Success
Slow Down: People with dementia need more time to process information. Try counting to ten in your head after asking a question before you speak again.
Use Visual Cues: Instead of saying “It’s time to eat,” lead them to the table and hand them a fork.
Focus on the Feeling: If they are agitated because they want to “go home” (even if they are already home), don’t argue with facts. Instead, say, “You feel safe at home, don’t you? Tell me about your favorite room there.”
Care Strategies by Stage
As the disease progresses, our caregiving style must adapt.
- Early Stage: Normalization. Keep routines as normal as possible. Focus on independence and use positive reinforcement.
- Moderate Stage: Support. This is when we see more “resistance to care” during personal tasks like bathing. Slow down. Use visual cues (like gesturing “washing hair”) rather than just giving verbal instructions.
- Late Stage: Comfort. Focus on the senses. Use music, compassionate touch, and a calm presence to provide a sense of safety.
A person with dementia is not a problem to be solved; they are a person to be loved. By understanding that their challenging expressions are actually attempts to communicate, we can respond with less frustration and more dignity.
Content based on webinars from: James L. West Center for Dementia Care
We hope this information is helpful to you in the important work you do as a family caregiver.
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