Behavior Is Communication: What Your Loved One With Dementia May Be Trying to Tell You

By Dr. Jennifer Stelter, Psy.D. CDP, CADDCT, DCS, DCSCT

Vice President of Clinical Dementia Care at Rosewater

Creator of the Dementia Connection Model©

A woman living with dementia repeatedly asks to go home, even though she is sitting in the house where she has lived for 30 years.

A father becomes angry when his daughter tries to help him shower.

A husband begins pacing through the house every afternoon and repeatedly checks the front door.

Families often describe these moments as “behaviors.” They may be told that their loved one is difficult, resistant, agitated, or uncooperative. I encourage families to look at these moments differently. Behavior is often communication.

The person may no longer be able to clearly explain what feels wrong, what they need, or what they fear. Their words, movements, facial expressions, tone of voice, and actions may begin carrying the message instead.

When we stop asking, “How do I make this behavior stop?” and begin asking, “What might this person be trying to communicate?” we create the possibility of a better response.

The person is not giving you a hard time

One of the most important things I want families to understand is that a person living with dementia is usually not trying to be difficult.

Dementia can affect memory, language, reasoning, perception, judgment, emotional regulation, and the ability to recognize or communicate physical discomfort. A person may feel frightened, rushed, embarrassed, confused, overstimulated, hungry, tired, lonely, or in pain without being able to name the feeling, often brought on by negative stimuli around them. The resulting behavior may make perfect sense from that person’s point of view.

Consider a person who resists taking a shower. The resistance may not mean, “I refuse to cooperate.” The person may be communicating:

“I do not understand why you are removing my clothing.”

“I feel exposed.”

“The room feels cold.”

“The water hurts my skin.”

“I do not recognize you.”

“I am afraid I might fall.”

“I do not understand what you want me to do.”

When caregivers respond only to the refusal, the interaction can become a struggle. When they investigate the possible reason, they have more options.

Start with curiosity, not correction

When something changes, pause before correcting, persuading, or insisting. Ask yourself five questions.

1) Could there be a physical need?

Look for pain, constipation, hunger, thirst, fatigue, infection, medication effects, poor vision, poor hearing, or the need to use the bathroom.

A sudden or significant behavioral change should be discussed with a medical professional. Physical discomfort and illness can appear as agitation, withdrawal, confusion, or aggression when a person cannot explain what is wrong.

2) Could the person be afraid or confused?

The person may not recognize the room, understand the task, or remember why you are there, creating a negative stimulus.

Approach from the front. Make eye contact. Use the person’s name. Explain one step at a time. Instead of saying: “Come on, Mom. We have to get you showered, dressed, and downstairs before your appointment.”

Try: “Mom, you are safe. I am here with you.”

Pause. Then say: “Let’s wash your hands.”

One simple step may feel manageable when an entire sequence does not.

3) Is the environment contributing?

Noise, glare, shadows, television, clutter, multiple conversations, unfamiliar people, and rushed movement can overwhelm a person living with dementia. Before assuming the person is the problem, examine the environment.

Turn off unnecessary noise.

Reduce the number of people speaking.

Move to a quieter space.

Improve the lighting.

Offer a familiar object.

Give the person more time.

Sometimes the most effective intervention is changing what surrounds the person creating a more positively stimulating environment.

4) Is there an emotional need?

The person may be seeking comfort, purpose, familiarity, reassurance, or connection. When someone says, “I want to go home,” the word home may not refer to a street address. Home may represent safety, family, belonging, an earlier period of life, or the feeling that someone is waiting for them. Correcting the person by saying, “You are home,” may increase frustration because the emotional need has not been answered. Try responding to the feeling:

“You want to feel safe.”

“You are thinking about your family.”

“Tell me about home.”

“I am staying here with you.”

You do not need to agree with every detail to acknowledge the person’s emotion, cultivating a deeper connection.

5) Are we expecting more than the person can manage?

Abilities can vary from day to day and even hour to hour. A task the person completed yesterday may feel impossible today. Long explanations, multiple choices, quick instructions, and repeated corrections can create a sense of failure.

Reduce the demand without removing the person’s dignity. Offer two simple choices instead of an open-ended question.

“Would you like the blue shirt or the green shirt?”

Demonstrate the action instead of describing every step. Begin the task with the person rather than directing from across the room. Allow time for a response.

Helping does not always mean taking over. Good dementia care provides enough support for the person to experience success.

What usually makes the moment worse

Families often rely on logic because logic works in most adult conversations. Dementia changes that equation.

Arguing, testing memory, insisting on facts, asking “Don’t you remember?”, speaking loudly, rushing, or explaining the same point repeatedly may increase shame, fear, or frustration.

The goal is not to win the factual argument. The goal is to help the person feel safe enough to move through the moment. This does not mean ignoring dangerous behavior or avoiding necessary medical care. It means selecting a response based on what the person’s brain can process at that moment.

A simple process you can use today

When distress begins, remember these five steps:

1. Pause.

2. Lower your voice and slow your movements.

3. Observe.

4. Notice what happened immediately before the behavior.

5. Investigate negative stimuli.

Consider physical, emotional, sensory, environmental, and communication needs. Connect. Acknowledge the person’s feeling before giving directions. Adjust. Change your words, the environment, the timing, or the task. Offer a positive stimuli.