Neurological Disease
My mother has end-stage Alzheimer disease. I think she may be in pain, but she isn’t able to communicate very well. How do I know if she is having pain?

Assessing pain in a person with Alzheimer disease can be difficult. Pain assessment is usually based on the individual’s ability to verbally report his or her pain, but many people with Alzheimer disease have difficulty communicating. Some people are able to answer “yes” or “no” when asked if they have pain, and some can point to where it hurts.

To assess your mother’s pain, make sure that you ask questions more than once and in more than one way: “Do you have pain right now?” or “Do you have discomfort right now?” or “Does it hurt right now?” These are different ways of asking the same question.

If your mother is unable to verbally communicate her pain, observe whether she shows any change in her usual behaviours. Aggression, agitation, refusal of care, yelling, hitting, grabbing, crying, facial grimacing, increased confusion, and decreased eye contact may be signs that she is having pain. Other signs include guarding her body, grinding her teeth, reacting to touch, withdrawing from contact, and drawing up her knees. Also observe if she seems to show any pain when she moves or does an activity.

When assessing pain in individuals unable to verbally communicate, it’s important to check for potential problems other than pain. Assess whether your mother has any unmet needs. Is she hungry or thirsty? Does she need to go to the bathroom? Are there any other possible causes of pain, such as infection, constipation, a wound, or undetected fractures? Does your mother have any underlying conditions, such as cancer or arthritis, that might be causing her pain?

If you think your mother is having pain, find ways to make her comfortable. Contact your health care team for their assistance. Pain treatment may include medications for pain control and other strategies to promote comfort, such as repositioning or massage. Your mother’s pain and what relieves it will need ongoing monitoring and evaluation.

You may find helpful guidance about assessing pain from Romayne Gallagher, MD, in this video: Pain and cognitive impairment: Reading the cues.