Topic Overview

What is dementia?

Dementia is a loss of mental skills that affects daily life. It can cause problems with memory and with how well a person can think, plan, and communicate.

Usually dementia gets worse over time. How long this takes is different for each person. Some people stay the same for years. Others lose skills quickly.

How does dementia make communication difficult?

A person with early-stage dementia may have trouble finding the right words.

As dementia gets worse, so do problems with words and thinking. A person may say things that don’t make sense. He or she may also have trouble knowing what others are saying.

When dementia is severe, a person can’t communicate with words and may not be able to answer yes/no questions with gestures. When this is the case, it’s a person’s behavior that hints at his or her needs and feelings. You may find that the best ways to communicate are with your presence, touch, and tone of voice.

What can you say, do, and watch for?

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 his or her signals.

Connecting

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.

If your attempt to connect seems to upset the person, follow the cues you’re getting. Stop trying to connect. You can try again later.

Using 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.

Watching 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 his or her 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 should you talk with the doctor?

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.