The signs that someone with dementia is in pain fall into six observable categories: changes in facial expressions, unusual vocalizations, altered body movements, shifts in social interactions, disrupted activity patterns, and physiological changes like elevated pulse or flushing. Because dementia progressively damages the brain’s ability to process and communicate the experience of pain, a person who once would have simply said “my knee hurts” may instead begin hitting, crying out, refusing to eat, or withdrawing from people they normally enjoy being around. A daughter notices her mother with Alzheimer’s suddenly resisting her morning bath and swinging at the aide who tries to help — not because of worsening dementia, but because an undiagnosed urinary tract infection is causing her significant pain she cannot articulate.
What makes this so urgent is the scale of the problem. Between 50 and 80 percent of patients with moderate to severe dementia experience pain on a daily basis, yet that pain is frequently under-detected and undertreated in both long-term and acute care settings. Clinical and neuroimaging studies now suggest that people with dementia may experience pain just as intensely — or even more intensely — than those without cognitive impairment, contradicting older assumptions that the disease somehow dulls sensation. This article covers the specific behavioral indicators caregivers and clinicians should watch for, the common medical conditions that cause pain in dementia patients, validated tools for assessing pain when someone cannot tell you what they feel, and practical strategies for making sure pain does not go ignored.
Table of Contents
- Why Are Pain Signs in Dementia So Difficult to Recognize?
- The Six Behavioral Categories That Signal Pain in Dementia
- What Conditions Commonly Cause Pain in People With Dementia?
- How Caregivers Can Assess Pain When Someone Cannot Speak for Themselves
- When Pain Gets Misidentified as a Behavioral Symptom of Dementia
- Why Observation During Movement Is Critical
- The Future of Pain Detection in Dementia Care
- Conclusion
- Frequently Asked Questions
Why Are Pain Signs in Dementia So Difficult to Recognize?
The central challenge is that dementia attacks the very systems a person needs to identify, interpret, and communicate pain. In the early stages, someone might still say they hurt but struggle to describe where or how severely. As the disease progresses, verbal communication deteriorates, and the person becomes increasingly dependent on nonverbal signals — signals that dementia itself can obscure. Alzheimer’s disease, for instance, causes a mask-like facial expression that minimizes typical pain cues like furrowed brows or a drawn mouth. A caregiver looking for the wince or grimace they would expect from anyone else may see a blank face and assume the person is comfortable. Compounding this, people with dementia may say “no” when directly asked if they are in pain, even when they are clearly experiencing it. They may also use the wrong words entirely — saying “injection” when they mean indigestion, or pointing to their head when the problem is in their abdomen.
Research has shown that cognitively impaired individuals self-report less pain than cognitively intact individuals, but their behavioral pain indicators are the same. This means the pain is there; it simply is not being communicated through the channels caregivers typically rely on. The gap between what a person with dementia experiences and what they can express is where suffering hides. This is why observational assessment is not just helpful but essential. Waiting for someone with moderate to severe dementia to tell you they hurt is not a reliable strategy. The American Geriatrics Society has identified six categories of behavioral indicators specifically because verbal reports alone are insufficient. Caregivers and clinicians who learn to read these behavioral signals become the voice for people who have lost theirs.
The Six Behavioral Categories That Signal Pain in Dementia
The American Geriatrics Society established six categories of behavioral pain indicators that apply across dementia types and stages. The first is facial expressions: frowning, grimacing, rapid blinking, or a sad and fearful look. Even when Alzheimer’s has flattened someone’s resting expression, pain can still break through in micro-expressions — brief flickers of distress that last a fraction of a second. The second category is vocalizations and sounds: crying, groaning, grunting, calling out, chanting, or noticeably loud breathing. A person who begins moaning during transfers from bed to wheelchair, for example, may be signaling joint pain or a pressure sore rather than general agitation. The third category is body movements and language. Fidgeting, guarding a particular body part, twitching, rubbing an area, tensing up, flinching when touched, or resisting repositioning all suggest that something hurts. The fourth is changes in interpersonal interactions — sudden aggression, increased irritability, or withdrawal from social contact.
A man who has always been gentle and begins striking out during dressing changes is communicating something, and pain should be the first suspicion, not the last. The fifth category covers changes in activity patterns and routines: altered sleep, loss of appetite, increased wandering, or avoidance of movement. The sixth involves physiological and bodily changes such as raised temperature, elevated pulse or blood pressure, perspiration, flushing, or pallor. However, no single indicator is definitive on its own. A person might grimace because of a loud noise, or become irritable because of a change in routine that has nothing to do with physical pain. The key is pattern recognition — noticing clusters of indicators, especially when they represent a change from the person’s baseline behavior. A caregiver who knows that their loved one typically sleeps well and suddenly finds them awake and rocking at 3 a.m. has a much stronger signal than a stranger encountering the same behavior for the first time. Context and familiarity matter enormously.
What Conditions Commonly Cause Pain in People With Dementia?
Many of the conditions that cause pain in dementia patients are predictable consequences of reduced mobility, declining self-care ability, and the progression of aging itself. Arthritis and joint stiffness are among the most common culprits, developing or worsening as a person becomes less physically active. Pressure sores are another frequent source, particularly in people who spend long periods in a bed or wheelchair without adequate repositioning. These ulcers can range from mild skin redness to deep wounds that reach muscle and bone, and they are acutely painful at every stage. Oral and dental problems are a particularly overlooked source of pain. Gum disease, cavities, cracked teeth, and ill-fitting dentures cause persistent discomfort, but because people with dementia often cannot maintain their own oral hygiene and may resist dental care, these issues go unaddressed for months or years. Consider a woman in a memory care facility who begins refusing meals and losing weight.
Staff may attribute this to disease progression, but the actual cause is a broken molar that makes chewing agonizing. Constipation, caused by limited diet, decreased mobility, and certain medications, is another common and treatable source of significant abdominal pain. Contractures — the permanent tightening of muscles, tendons, or joints from lack of movement — develop gradually but can make even gentle range-of-motion exercises excruciating. The practical takeaway for caregivers is that pain should be assumed to be present whenever a person with dementia has a condition or has undergone a procedure that would typically cause pain in anyone else. A hip replacement causes pain. Arthritis causes pain. A urinary tract infection causes pain. The absence of a verbal complaint does not equal the absence of suffering.
How Caregivers Can Assess Pain When Someone Cannot Speak for Themselves
Several validated assessment tools exist to help caregivers and clinicians systematically evaluate pain in people with dementia. The PAINAD scale (Pain Assessment in Advanced Dementia) is one of the most widely used. It measures five domains — breathing, facial expressions, vocalizations, body language, and consolability — each scored from 0 to 2, for a total possible score of 10. Studies have demonstrated concurrent validity ranging from r = 0.76 to 0.95, meaning it correlates strongly with other established pain measures. Its advantage is simplicity: a bedside nurse or family caregiver can learn to use it in minutes. Its limitation is that it captures a snapshot in time and may miss pain that occurs only during specific activities. The PACSLAC (Pain Assessment Checklist for Seniors with Limited Ability to Communicate) takes a broader approach, covering facial expression, body movement, mood, physiological changes, eating and sleeping changes, and vocal behaviors. The NOPPAIN tool found that bracing — stiffening or holding the body rigid — occurred in 90 percent of pain cases, while pain noises appeared in roughly 43 percent, illustrating that body language is often a more reliable indicator than sound.
The MOBID-2 is notable for being the only behavioral measure shown to be sensitive to pain treatment effectiveness, meaning it can help clinicians determine whether an intervention is actually working. On the technological frontier, the ePAT (electronic Pain Assessment Tool) uses automated facial recognition technology to detect micro-expressions of pain, combined with assessment across five behavioral domains: voice, movement, behavior, activity, and body. The tradeoff between these tools comes down to depth versus practicality. PAINAD is fast and easy but less comprehensive. PACSLAC and MOBID-2 capture more information but require more training and time. The ePAT offers objectivity through technology but depends on equipment and software access. For most family caregivers, starting with PAINAD and combining it with careful observation during movement — bathing, walking, transfers — provides a reasonable foundation. Pain is often activated or intensified with movement, so observing someone only at rest can produce a falsely reassuring picture.
When Pain Gets Misidentified as a Behavioral Symptom of Dementia
One of the most consequential mistakes in dementia care is treating pain-driven behavior with antipsychotic medications or sedatives instead of analgesics. When a person with dementia becomes agitated, aggressive, or begins wandering more than usual, the reflexive clinical response is sometimes to manage the “behavior problem” rather than investigate its cause. A man who starts yelling during afternoon care might be prescribed an antipsychotic when what he actually needs is acetaminophen for his osteoarthritis. The behavior is treated. The pain is not. The person is now sedated and still hurting. This pattern is disturbingly common, and the consequences extend beyond unrelieved pain.
Antipsychotic medications carry serious risks for older adults with dementia, including increased risk of stroke and death. Meanwhile, the underlying pain condition — whether it is a pressure ulcer, a dental abscess, or chronic constipation — continues to worsen without treatment. Clinicians and caregivers should adopt the principle of assuming pain is present when behavioral changes emerge, especially if the person has known painful conditions, and conducting a pain trial with appropriate analgesics before resorting to psychotropic medications. If the behavior improves with pain treatment, the diagnosis is confirmed retrospectively. The warning here is that even well-meaning caregivers and healthcare providers can fall into this trap. The mask-like facial expression, the inability to verbalize pain, and the overlap between pain behaviors and dementia behaviors create a perfect storm for misattribution. Vigilance requires actively questioning whether pain could be the driver every time a behavioral change occurs.
Why Observation During Movement Is Critical
Pain assessment conducted only while a person with dementia is sitting quietly in a chair will miss a significant proportion of pain. Many painful conditions — arthritis, pressure sores, contractures — produce their most intense discomfort during movement: standing up, being transferred from bed to chair, walking, or being repositioned during bathing. A person who appears calm and comfortable at rest may exhibit grimacing, guarding, vocal distress, and muscle tension the moment they are asked to move.
Best practice calls for observation during activities that require physical movement. Bathing and dressing are particularly revealing, because they involve manipulation of joints, pressure on skin, and positions that may provoke pain responses. A family caregiver who consistently tracks how their loved one responds during these daily activities — noting whether the person flinches when a shoulder is raised, cries out during transfers, or tenses when being rolled in bed — builds a behavioral pain profile over time that is far more informative than any single assessment.
The Future of Pain Detection in Dementia Care
Technology is beginning to close the gap between pain experience and pain detection. The ePAT system, which uses automated facial recognition to identify micro-expressions of pain invisible to the human eye, represents one of the most promising developments. By combining AI-driven facial analysis with assessment of voice, movement, behavior, activity, and body indicators, this technology has the potential to standardize and improve pain detection across care settings, reducing reliance on individual caregiver skill and experience.
Beyond technology, the broader shift is cultural. The old assumption that dementia somehow reduces pain sensation has been thoroughly debunked by neuroimaging research. The emerging standard is that pain should be presumed present in any person with dementia who has a condition ordinarily associated with pain, and that the absence of a pain complaint is never evidence of the absence of pain. As this principle becomes embedded in training programs for nurses, aides, and family caregivers, the enormous population of dementia patients living with unrecognized daily pain should begin to shrink — though translating research into routine practice remains the hardest step.
Conclusion
Recognizing pain in someone with dementia requires shifting from a passive approach — waiting for the person to say something hurts — to an active one built on observation, pattern recognition, and a willingness to assume pain exists when the circumstances suggest it should. The six behavioral categories identified by the American Geriatrics Society provide a practical framework: facial expressions, vocalizations, body movements, changes in social interactions, disrupted routines, and physiological changes. Combined with knowledge of common pain sources like arthritis, pressure sores, dental problems, and constipation, these indicators give caregivers a real chance of identifying pain that would otherwise go unnoticed.
The next step for any caregiver is to learn and begin using a validated assessment tool like PAINAD, to make a habit of observing during movement rather than only at rest, and to always consider pain as a possible explanation when behavior changes. Advocate clearly with healthcare providers: if a loved one with dementia is becoming more agitated or aggressive, insist that pain be investigated and treated before psychotropic medications are considered. Pain in dementia is not invisible. It simply speaks a different language, and learning that language is one of the most important things a caregiver can do.
Frequently Asked Questions
Can a person with dementia still feel pain?
Yes. Clinical and neuroimaging studies indicate that people with dementia may experience pain just as intensely or even more intensely than those without cognitive impairment. The disease impairs their ability to communicate pain, not their ability to feel it.
Should I trust a dementia patient who says they are not in pain?
Not necessarily. Research shows that people with dementia may say “no” when asked if they are in pain even when they are experiencing it. They may also use incorrect words to describe their symptoms. Self-report should be combined with observational assessment for a more complete picture.
What is the most reliable sign of pain in someone with advanced dementia?
No single sign is definitive, but body language — particularly bracing, guarding, and flinching when touched — is among the most consistent. The NOPPAIN assessment tool found bracing present in 90 percent of identified pain cases. Clusters of indicators across multiple categories are more reliable than any single behavior.
What should I do if I think my loved one with dementia is in pain but their doctor is not addressing it?
Document specific behavioral changes with dates, times, and circumstances. Use a validated tool like PAINAD to provide objective scores. Request a pain trial — a short course of appropriate analgesics to see if behavior improves. If pain medication reduces agitation or distress, that strongly supports pain as the underlying cause.
Are there common conditions that cause pain in dementia patients that are easy to miss?
Dental problems are frequently overlooked because oral exams are difficult to perform on someone who may resist. Constipation is another commonly missed cause of significant discomfort. Pressure sores can develop quickly in immobile patients, and contractures from lack of movement cause pain that worsens gradually over time.
