How can you tell when a person with dementia has pain?

Oct 22, 2025 4 min read •

Dementia Care Senior Health Pain Management

According to the Alzheimer's Association, over 6 million Americans are living with Alzheimer's disease, a common cause of dementia, with many experiencing untreated pain due to communication difficulties. Recognizing how can you tell when a person with dementia has pain is a critical skill for any caregiver or loved one to ensure proper comfort and care.

Quick Summary

Observing behavioral changes, such as increased agitation, aggression, or withdrawal, is key to identifying pain in someone with dementia, as is noting subtle physical signs and using structured pain assessment tools to guide care decisions.

Key Points

Observe Behavioral Changes: Look for increased agitation, aggression, withdrawal, or changes in eating and sleeping habits, as these are often key indicators of pain in dementia patients.
Pay Attention to Non-Verbal Cues: Notice subtle physical signs like grimacing, moaning, or guarding a body part, which can communicate discomfort when verbal expression is not possible.
Utilize Pain Assessment Tools: Use validated tools like the Pain Assessment in Advanced Dementia (PAINAD) scale to systematically evaluate and score pain based on observable behaviors and physical indicators.
Investigate Potential Causes: Consider underlying medical conditions such as arthritis or UTIs, dental problems, or recent physical injuries as possible sources of the pain.
Consult a Healthcare Professional: Involve medical professionals to help identify the source of the pain and develop an appropriate pain management plan, which may involve adjusting medications.
Document Your Observations: Keep a log of suspected pain episodes, including behaviors, time of day, and potential triggers, to provide a clear and consistent record for healthcare providers.

Recognizing Non-Verbal Cues of Pain

As a person's dementia progresses, their ability to verbally express pain diminishes. This shift necessitates that caregivers become adept at interpreting non-verbal communication and behavioral changes. Instead of a verbal complaint like "My knee hurts," you might observe a grimace, a wince, or a change in their breathing patterns. Increased restlessness, constant fidgeting, or a new resistance to being touched or moved are all significant indicators.

Behavioral Changes as Pain Indicators

Behavior is often the primary way a person with dementia communicates distress. Any sudden or gradual shift in behavior should be investigated as a potential sign of pain. Look for:

Increased Agitation or Aggression: A calm individual becoming easily frustrated, yelling, or lashing out may be experiencing pain.
Withdrawal and Lethargy: Conversely, an active person who becomes withdrawn, sleeps more, or loses interest in previously enjoyed activities might be silently suffering.
Changes in Appetite: Refusing to eat or drink, or changes in eating habits, could be a sign of discomfort, particularly with dental or digestive issues.
Disrupted Sleep Patterns: Difficulty sleeping, waking up frequently, or unusual restlessness at night can indicate pain.

The Importance of Routine Observation

Caregivers must establish a routine of systematic observation. Keeping a simple pain log can be incredibly helpful. Note the time of day, any suspected pain behaviors, the duration, and any possible triggers. This log can then be shared with healthcare professionals to help them form a more complete picture of the person's health.

Physical and Emotional Manifestations of Pain

Pain can manifest in a variety of physical and emotional ways that are not always obvious. These signs require careful attention and should be considered in context with the individual's typical behavior.

Physical Indicators to Watch For

Facial Expressions: Look for frowning, grimacing, rapid blinking, or a tight-lipped expression.
Vocalizations: Moaning, groaning, sighing, or calling out can be signs of pain, especially during movement.
Body Language: Guarding a specific body part, limping, holding a tense posture, or rocking back and forth can all signal pain.
Changes in Vitals: While less reliable on their own, a noticeable increase in heart rate, breathing, or blood pressure can be a sign of acute pain.

Emotional and Psychological Signs

Increased Irritability: Unexplained moodiness or short-temperedness.
Depression-like Symptoms: Loss of interest and pleasure, sadness, or tearfulness.
Social Isolation: Pushing others away, avoiding interaction, and preferring to be alone.

Using Pain Assessment Tools

Specialized pain assessment tools have been developed for use with non-verbal or cognitively impaired individuals. These tools provide a structured, objective way to evaluate pain based on observable behaviors.

The Pain Assessment in Advanced Dementia (PAINAD) Scale

The PAINAD scale is a widely used and validated tool that helps caregivers score pain levels based on five specific criteria. A higher score indicates a higher level of pain.


Observation Category	Score 0 (Normal)	Score 1 (Mild)	Score 2 (Severe)
Breathing	Normal	Occasional labored breathing; short period of hyperventilation	Noisy labored breathing; long periods of hyperventilation
Negative Vocalization	None	Occasional moan or groan; low-level crying	Crying out; loud moaning or groaning; repeated verbal outburst
Facial Expression	Smiling; relaxed; at peace	Sad; frightened; distressed; frown	Facial expression of pain (grimacing, frowning, tightening)
Body Language	Relaxed; still; normal posture	Tense; anxious; moving frequently; fidgeting	Rigid; guarding; clenched fists; rapid movements
Consolability	Easily calmed with soothing; no need to calm	Distracted or calmed for short periods with soothing; difficult to console	Unable to calm with soothing; inconsolable

How to Use the PAINAD Scale

Observe: Watch the person for several minutes, preferably during a time of potential movement or activity (e.g., during bathing, dressing, or changing position).
Score: Rate each of the five categories from 0 to 2 based on your observations.
Total: Sum the scores to get a total from 0 to 10. A score of 4 or higher suggests a significant level of pain that requires attention.
Track: Keep a record of the scores to track changes over time and share with a healthcare provider.

Investigating Potential Pain Sources

Once pain is suspected, the next step is to investigate the potential cause. A person with dementia may have several underlying issues contributing to their discomfort.

Common Sources of Pain in Dementia

Underlying Medical Conditions: Arthritis, dental problems, urinary tract infections (UTIs), constipation, and side effects from medication are all frequent culprits.
Physical Injury: Bumps, falls, or other injuries may have occurred unnoticed.
Environmental Factors: Uncomfortable seating, ill-fitting clothes, or a hot or cold environment can cause distress.

The Role of Medication

Consulting with a healthcare provider is essential. They can evaluate the person's medication list, assess for potential side effects, and consider appropriate pain management strategies. This may include adjusting existing medications or introducing new ones specifically for pain relief. For further information on managing dementia symptoms, you can refer to the Alzheimer's Association website.

Conclusion

Identifying pain in a person with dementia requires a combination of keen observation, interpretation of behavioral changes, and the use of structured assessment tools. Caregivers play a vital role in being the voice for those who can no longer express their needs. By paying close attention to non-verbal cues, recognizing subtle behavioral shifts, and systematically documenting observations, you can help ensure that pain is managed effectively, leading to a better quality of life for the individual under your care. The proactive approach of looking for physical and emotional signs, combined with leveraging tools like the PAINAD scale, creates a comprehensive strategy for recognizing and addressing pain, even when communication is difficult.

Frequently Asked Questions

Behavioral changes are often the most common and noticeable signs. These can include increased agitation, aggression, or a new pattern of withdrawal and lethargy. You may also see physical signs like grimacing or guarding a specific body part.

Yes, a UTI is a very common cause of increased confusion and discomfort in people with dementia. The infection can cause pain that the person may not be able to express, leading to behavioral changes that can be misinterpreted.

Identifying a headache can be difficult without verbal cues. Look for signs such as frowning, squinting, rubbing their head, or increased sensitivity to light and sound. They may also become withdrawn and irritable.

While it's important to approach with a mindset of trust, it is highly unlikely that a person with advanced dementia can intentionally fake pain. Their communication is often instinctual and driven by their physical and emotional state, so observed signs of pain should be taken seriously.

The PAINAD scale (Pain Assessment in Advanced Dementia) is a tool used by caregivers to assess pain based on five observable behaviors: breathing, vocalization, facial expression, body language, and consolability. Each is scored from 0 to 2, and the total provides an indication of the person's pain level.

No, you should never give medication, including over-the-counter pain relievers, without first consulting a healthcare professional. They need to correctly diagnose the source of the pain and ensure the medication is appropriate and safe for the individual.

If you suspect pain but cannot pinpoint the source, it is crucial to consult a healthcare provider. They can perform a thorough examination, including checks for common culprits like dental issues, infections, and constipation, and suggest appropriate next steps.

Yes, pain communication often changes as dementia progresses. In earlier stages, the person may still be able to use some words, while in later stages, communication becomes almost entirely non-verbal, relying on physical and behavioral cues.

Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice. Always consult a qualified healthcare provider regarding personal health decisions.