Pain assessment in non-verbal patients — knowing when they're hurting

Reviewed by Sarah Mitchell, R.N.

Studies show that pain is significantly undertreated in older adults who cannot communicate verbally, with up to 80% of nursing home residents with dementia experiencing pain that goes unrecognized, according to the NIH. You are the person who knows your parent's baseline well enough to notice the facial expressions, behavioral changes, and body language that signal they are hurting.

Your parent looks away when you touch their shoulder. They groan during activities they used to enjoy. Their face tightens when moved a certain way. They're more agitated than usual, or, conversely, more withdrawn. You know something is wrong, but they cannot tell you. They cannot say "My back hurts" or "This medication is making me uncomfortable." You're left trying to read subtle signals, guessing, and doubting your own interpretations.

Assessing pain in someone who cannot speak is one of the hardest parts of caregiving. You must become a detective, learning to read your parent's individual signs and patterns. The challenge lies in the fact that pain doesn't always look the way we expect. Some people get quieter when they hurt. Some get more agitated. Some show physical signs. Some hide their pain until it becomes severe.

The Physical Signs of Pain

Grimacing, muscle tension, pulling away from touch, changes in breathing, and vocalizations like moaning or whimpering are the most reliable physical indicators of pain. Your parent's face tells a story if you know how to read it. A grimace is the most obvious sign. The corners of the mouth turn down. The forehead wrinkles. The eyes might squeeze shut or look away. Some people furrow their brows. These expressions often happen during movement or when an affected area is touched.

Body tension increases with pain. Muscles tighten. Your parent might clench their fists or hold their body rigidly. They might pull away from touch. Notice whether they favor one side of their body. Protecting an area by limiting movement or keeping weight off one leg suggests pain in that location.

Breathing changes. Pain can cause people to hold their breath or to breathe more shallowly. You might notice rapid breathing or hear them gasp during movement.

Crying or vocalizations beyond their normal pattern suggest pain. This might be actual crying, moaning, groaning, or other sounds. Whimpering, for instance, is often a sign of significant pain. A change in the pitch or quality of voice can also indicate discomfort.

Increased perspiration sometimes accompanies pain, particularly severe pain. You might notice sweating on the forehead or dampness elsewhere on the body even when the room temperature is cool.

Pupils can dilate with pain. This is harder to assess than other signs, but if you're very close to your parent and notice their pupils look larger than usual, pain might be the cause.

Trembling or shaking can indicate pain, though this is less common than other signs.

Behavioral Changes That Indicate Pain

Sudden withdrawal from enjoyed activities, new agitation or irritability, restlessness, resistance to care, sleep changes, and loss of appetite are all behavioral signals that something hurts. If your parent suddenly doesn't want to walk, eat at the table, or participate in activities that mattered to them, pain might be the reason. They're avoiding something that hurts.

Increased agitation or irritability sometimes means pain. A person who is generally calm but becomes short-tempered or difficult might be reacting to discomfort they cannot express. This is particularly common in people with dementia, where pain can trigger behavioral changes.

Restlessness is another sign. Constant shifting, inability to get comfortable, picking at clothes or bedding, or fidgeting can all indicate pain. Your parent is trying to find a position or activity that relieves the discomfort.

Resistance to care activities might indicate pain during those activities. If your parent suddenly resists bathing, getting dressed, or transfers that didn't bother them before, pain during those activities might be the cause. Notice which activities trigger the resistance.

Sleep changes matter. Pain can disrupt sleep. Your parent might have trouble falling asleep, wake frequently, or sleep less than usual. Conversely, some people sleep more when in pain as a way to escape discomfort.

Loss of interest in eating can indicate pain. If your parent who normally enjoyed meals suddenly eats very little, pain in the mouth, throat, or digestive system might be the cause. Difficulty chewing also suggests oral pain.

Increased dependence or clinginess sometimes means pain. Your parent might want you nearby more than usual or might resist you leaving the room. This can be their way of seeking comfort from pain.

Contextual Clues and Your Knowledge of Your Parent

Any change from your parent's baseline behavior is significant, and thinking about recent falls, medical procedures, medication changes, and chronic conditions helps you pinpoint the likely source. You know their baseline. You know how they normally act, what they normally do, what movements they can normally do without difficulty. Changes from that baseline are significant.

Think about the medical context. Does your parent have a condition known to cause pain? A recent fall, surgery, or injection might explain pain. Arthritis, cancer, neuropathy, or other chronic conditions often cause pain that might not always be visible.

Think about medication changes. Some medications can cause discomfort or pain as side effects. A new medication might be the cause of behavioral changes or physical discomfort.

Think about what happened before the pain signals appeared. Did your parent fall? Were they moved in a way that might have strained something? Did they sit in an awkward position for a long time? Did they try an activity they haven't done in a while? Context helps you pinpoint where the pain might be.

Think about time patterns. Does your parent seem to hurt more at certain times of day? Pain is often worse in the morning for some conditions and worse in the evening for others. Tracking patterns helps you identify pain that might be intermittent or related to specific activities.

Pain Assessment Tools

The PAINAD scale, which evaluates breathing, vocalizations, facial expression, body language, and consolability, is the standard tool for assessing pain in people with advanced dementia. Healthcare providers sometimes use pain assessment tools designed for non-verbal people. The PAINAD scale (Pain Assessment in Advanced Dementia) looks at breathing, negative vocalizations, facial expression, body language, and consolability. Learning about these tools helps you understand what providers are looking for and helps you communicate your observations to them.

The Faces Pain Scale uses pictures of faces with different expressions to help indicate pain severity. Some people who cannot speak can point to a face that matches their pain level. This works best if your parent still has cognitive ability to understand the concept and point to a picture.

You can create your own system. Document what you observe during clearly painful moments so you recognize those signs when they appear again. If a fall is obviously painful, what did your parent look like? Sound like? How did they move? The next time you see those signs, you'll recognize pain.

Communicating Your Observations

Specific, time-linked descriptions of what you see and hear give the doctor actionable information, while "they seem to be in pain" does not. "My mother is in pain" is less helpful than "She holds her right shoulder when she moves and grimaces. She's not eating much. She spent most of the day very still in her chair, when she usually moves around quite a bit. This started after her fall three days ago."

Describe when you see the signs. "She seems worse in the morning and after she's been sitting for more than an hour" tells the doctor something important. "She groans when we help her get out of bed" tells them the pain is worse with movement.

Take photographs or video of concerning signs if it helps convey what you're seeing. A brief video showing how your parent moves or sounds during suspected pain can help a healthcare provider understand what you're observing.

Document what you've tried. "She wouldn't take the pain medication this morning, but by afternoon she seemed calmer" or "We tried repositioning her and she immediately relaxed" gives helpful information about what works and what doesn't.

Advocating for Pain Treatment

Your parent deserves to be comfortable, and if the current pain management is not working, say so directly and ask for adjustments. Your parent deserves to be comfortable. If you believe your parent is in pain, bring it up. Don't assume doctors will address it automatically.

Work with the healthcare team to identify the cause of the pain and to find treatments that help. This might involve physical therapy, medications, positioning strategies, or other interventions. Different types of pain respond to different treatments.

Pay attention to whether pain treatments are working. If medication doesn't seem to help, say so. If an intervention makes your parent more comfortable, note that too. Feedback from someone who is with your parent regularly is invaluable for tailoring pain management.

Be patient while finding the right approach. What works for one person doesn't always work for another. Finding the right pain management strategy might take time and adjustment.

The Emotional Weight of This Work

This is some of the most intimate and emotionally demanding caregiving there is, and sometimes you will guess wrong in both directions. You're making educated guesses, and sometimes you'll guess wrong. Sometimes you'll see pain when there is none. Sometimes you'll miss pain that's there. Both of these things are part of the reality of caring for someone who cannot communicate.

Forgive yourself for these mistakes. You're doing your best with imperfect information. What matters is that you keep paying attention. You keep trying. You keep advocating for your parent's comfort.

Know that your attention to these subtle signs matters deeply. Many elderly people in institutional settings have their pain missed because no one knows them well enough to notice the signals. Your presence, your attention, and your willingness to read these subtle cues ensures that your parent's pain is noticed and addressed.

This is some of the most intimate caregiving there is. You're becoming fluent in your parent's language when they cannot speak. You're honoring their experience and their right to be comfortable. You're providing the attention and advocacy that ensures their wellbeing.

Frequently Asked Questions

How do I know if my parent with dementia is in pain or just agitated?

Pain and agitation look similar, but pain-related agitation usually has a physical trigger: it worsens with movement, touch, or specific care activities. Try gentle repositioning or a warm compress. If the agitation eases, pain was likely the cause. If it does not, other factors like overstimulation, fear, or unmet needs may be involved.

Should I ask the doctor for pain medication even if I am not sure my parent is hurting?

Yes. Untreated pain in non-verbal patients is far more common than overtreatment. If you are seeing behavioral changes that could indicate pain, a trial of appropriate pain medication is a reasonable diagnostic approach. If the behaviors improve with pain treatment, you have your answer.

What is the PAINAD scale and can I use it at home?

The Pain Assessment in Advanced Dementia scale scores five categories: breathing, negative vocalizations, facial expression, body language, and consolability, each on a scale of 0 to 2. You can learn to use it at home by downloading a copy and practicing during known comfortable and uncomfortable moments. Sharing your PAINAD observations with the doctor gives them structured data to work with.

My parent grimaces during transfers but seems fine otherwise. Is that normal?

Grimacing during movement that involves joints, back, or hips strongly suggests pain in those areas. Arthritis, old injuries, or positioning issues are common causes. Report this to the doctor with specific details about which movements trigger the grimace, because targeted treatment like a different transfer technique, pain medication before transfers, or physical therapy can make a real difference.