Finding the Cause of Distress in Dementia

A person with dementia who shouts, hits or refuses to sit down is usually telling you something the only way they still can. They may be in pain, scared, wet, hungry or confused about where they are. Your task at this level goes beyond calming the moment. It is working out the cause, so the same thing does not happen tomorrow, and recognizing when a change is not the dementia at all. You are often the first person to see it. Remember your limits: you observe, respond and report. The nurse assesses, and only the provider diagnoses or changes medicine. Rules on what aides may do vary by state and employer.

What You Will Be Able to Do

• Describe a person's baseline, and notice a change from it.
• Keep an ABC log that shows a pattern.
• Check for the common causes of distress in order.
• Recognize pain in a person who cannot tell you about it.
• Tell when a sudden change needs a call to the nurse now.
• Respond safely to agitation, aggression and accusations.

Start With the Baseline

Baseline means what is normal for this person: how they usually walk, talk, eat, sleep and behave, and at what time of day. You cannot see a change if you do not know the normal. Take a few minutes each shift to compare today with what you know.

• Is she more sleepy, or harder to wake?
• Is he using fewer words than last week?
• Did she eat less at lunch?
• Is he walking differently?
• Is she more upset, or upset at a new time?

Learn the person's story too. A retired nurse who gets up at 5 a.m. and "goes to work" is following a lifelong routine. A former farmer who won't sit still at sunset may be thinking of chores. This is person-centered care: fitting what you do to the person's history, preferences and needs. Knowing the story often explains the behavior.

Use the ABC Log to Find a Pattern

You may know the ABC method: Antecedent (what happened just before), Behavior (what the person did) and Consequence (what happened after). One event tells you very little. A week of notes can show you a pattern that no one could see in the moment.

Write down only what you saw, not what you think it means. "Hit my arm with his right hand" is useful. "Was being mean" is not.

Worked example. Here is Mr. Greene's log for five days.

The pattern: every event was early in the morning, and most involved rolling onto his left side. He was not "aggressive in the mornings." He may have left hip or shoulder pain that is worse after a night in bed. You give the log to the nurse, who can assess for pain and arthritis and may ask the provider about a pain plan. The log did not diagnose anything, but it pointed the nurse at the right question.

Check the Common Causes

When someone is upset, walk through the likely causes in order. The first group matters most, because these can be treated.

Alzheimer's Association guidance lists pain, hunger, thirst, constipation, a full bladder, infection and skin irritation as things to check, and it also lists changes such as a move, a hospital stay, houseguests and new caregivers. A change of staff can be enough.

Pain Without Words

Pain is often missed in dementia, because the person may not have the words, or may not connect the feeling to a body part. Instead it shows as behavior. Nurses may use a scale such as the Pain Assessment in Advanced Dementia (PAINAD), which scores five things they can see. You do not score it unless you have been trained and your employer allows it, but you should watch for the same five things and report them.

• Breathing: noisy, labored or fast breathing.
• Sounds: moaning, groaning, calling out or crying.
• Face: frowning, grimacing or looking frightened.
• Body: tense, clenched fists, guarding a body part, pulling away or pushing you off.
• Comfort: cannot be settled by your voice or touch.

Pay attention to when these appear. Pain that shows up during a turn or a transfer, or eases when the person is still, gives the nurse useful information.

Sudden Change: Not the Dementia

Dementia usually changes slowly, over months and years. A change over hours or days is a warning sign. The most common reason is delirium, a sudden state of confusion caused by a medical problem such as infection, dehydration, constipation, low oxygen, a new medicine or a medicine stopped. It can happen on top of dementia, and it is often reversible if it is caught early.

Do not assume a urinary infection either. It is one possible cause among many, and it is for the nurse and provider to decide. Your job is to report what changed.

Warning: Call the nurse right away for sudden confusion or sleepiness, a new fall, trouble breathing, fever, new weakness on one side, slurred speech or a drooping face, severe pain, or a person who stops eating or drinking. Call 911 for stroke signs or if the person cannot be woken. Never write it off as "just the dementia."

Responding in the Moment

When a person is agitated, your own calm is your main tool.

1. Stop the task. Nothing you were doing is worth a fight.
2. Check that everyone is safe. Give the person room.
3. Approach from the front and stay at eye level.
4. Speak softly and slowly. Use short phrases: "You're safe. I'm here."
5. Name the feeling. "You look worried." Do not explain or argue.
6. Look for the trigger. Quickly run through the list above.
7. Offer one simple thing. A walk, a drink, a familiar song or a quiet room.
8. Come back later. Leaving for 10 to 15 minutes often works if it is safe to leave.

If the Person Becomes Physically Aggressive

Step back out of reach. Speak calmly, look for the trigger and report the episode. Hitting and grabbing are usually a reaction to fear or pain, and they are often set off by care that feels like an attack.

• Keep a clear path to the door.
• Do not stand directly in front of a person who is swinging. Stand a little to one side, out of reach.
• If you are grabbed, stay calm, do not pull hard and speak softly. Call for help.
• Move other residents or family away.
• Never hit back, shout, punish or hold the person down.
• If you are in danger, leave the room if the person will be safe, and call for help. In a home, call your supervisor. Call 911 if anyone is in immediate danger.
• Report every injury to you, however small.

Restraints are not an answer you can reach for. Federal nursing home rules protect residents from physical or chemical restraints used for discipline or convenience, and restraints raise the risk of injury. Only the care team can order one, and only for a medical reason.

Accusations, False Beliefs and Sexual Behavior

• "You stole my purse." Do not defend yourself. Stay calm, help look for the item and then redirect. Know the person's usual hiding places. Tell the nurse, and report your search in the note, which also protects you. A family can keep a spare of an item that often goes missing.
• Seeing things that are not there. Do not argue. If it does not upset them, acknowledge it and move on. If it scares them, reassure them and change rooms. Report any new hallucination, because it can have a medical cause.
• Sexual remarks or touching. Dementia can remove a person's sense of what is appropriate. It can also come from needing the toilet, being too hot or wanting comfort. Stay calm, do not shame them, gently move their hand and redirect them. Report it every time, and tell your supervisor if you feel unsafe.

Medicine Is Not Your Call

You may hear "she needs something to calm her down." Non-drug approaches come first in dementia care. Antipsychotic medicines carry an FDA boxed warning, the strongest kind, because they raise the risk of death in older adults with dementia-related psychosis. People with Lewy body dementia can have severe reactions to these drugs.

You do not choose, suggest or give these medicines. Your log is what helps the team treat the cause instead. Do tell the nurse right away if you see new stiffness, heavy sleepiness, a fall or more confusion after any medicine change.

Giving the Nurse a Useful Report

A useful report takes a few seconds and has four parts: who, what changed, since when and what you did.

Example. "Mrs. Kim in 12 has been very sleepy since this morning and did not know me, which is new. She drank about half a cup all day. Her urine smells strong. Yesterday she knew my name and walked to lunch. She has no fever on my check at 2 p.m. I've put her back to bed with the rails as ordered, and I'm staying with her."

Compare that with "Mrs. Kim is off today." The first version gets action.

Common Mistakes

Check Your Understanding

1. Mrs. Adams has been calm for months. Today she is suddenly shouting, cannot follow you and keeps falling asleep. What does this suggest, and what do you do?

This is a sudden change, so it may be delirium, not dementia. Keep her safe and call the nurse right away. Report when it started, what she has eaten and drunk and what is different from yesterday.

2. Your log shows Mr. Tran gets upset every day at about 11, right before lunch, and it improves after he eats. What might be going on, and what can you try?

Hunger or thirst may be the trigger. Offer a drink or small snack that fits his diet at about 10:30, keep logging and tell the nurse what you found.

3. A woman with late-stage dementia grimaces and clenches her fist each time you turn her. She cannot tell you why. What do you do?

Treat this as possible pain. Move gently, finish only what is needed, and report exactly what you saw, and when, to the nurse.

4. A resident grabs your arm hard during a shower and will not let go. What do you do?

Stay calm, do not yank away, speak softly and call for help. Stop the shower when it is safe. Afterward look for the trigger, report it and report any injury to yourself.

5. A family member asks you to give her father his "calming pill" early because he's been pacing. What do you do?

Do not give it early or change any dose. Tell the nurse what is happening, and look for the reason he is pacing.

Key Takeaways

• Behavior is usually communication. Look for pain, needs, surroundings and the task.
• Know the person's baseline, and write facts, not labels, in an ABC log.
• Pain in dementia shows up in breathing, sounds, the face, the body and whether they can be comforted.
• A change over hours or days is medical until the nurse says otherwise.
• Step back from aggression, stay calm and never restrain, punish or hit back.
• Medicine decisions belong to the care team. Your facts help them treat the real cause.