Overview

The easiest way to learn about someone's pain level is to ask and get an answer. But when someone has severe dementia, communicating can be difficult. Memory problems can also get in the way.

But there are ways you can assess pain with few to no words. The more you get to know a person, the better you can understand their signals.

• Be calm and supportive.
• Pay attention to your tone of voice. A person with dementia is still aware of emotions and may become upset when sensing anger or irritation in your voice.
• Try eye contact.
• Try touch to reassure and show that you are listening. Touch may be better understood than words.
• Follow the cues you're getting if your attempt to connect seems to upset the person. Stop trying to connect. You can try again later.
• Use simple questions.
  • Use one short, simple sentence at a time, like "Do you have pain right now?" and "Can you show me where?"
  • If the word "pain" doesn't seem to be understood, try a similar word, such as "ache" or "hurt."
  • Try questions that can be answered with "yes" or "no."
  • Pay attention to the person's tone of voice and gestures. These can be your clues to what a person is feeling. Sometimes the emotion is more important than what is said.
• Watch for signs of pain. People with severe dementia often express pain in ways that you wouldn't expect. To learn about a person's pain, get to know their own behaviors and habits. Someone with dementia might express pain with:
  • Facial expressions. You may see blinking, frowning, grimacing, or a sad or fearful look.
  • Sounds. You may hear crying, groaning, or grunting. For some people, asking for help, calling out, chanting, or loud breathing can be a sign of pain.
  • Changes in behavior. You may notice sudden aggression, confusion, fatigue, or restlessness. Some people become irritable or withdrawn.
  • Changes in activity. You may notice a change in sleep or appetite. Some people wander more than usual.

When you know a person with dementia, you can see behavior changes that others don't always notice. Your knowledge is a valuable resource for a doctor trying to assess and treat this person.

If you see changes in behavior, expressions, or activity that may be signs of pain, contact your dementia care team right away. It's important to diagnose the cause. It may be pain, but there may be other causes, such as infection, that also would need prompt treatment.