Understanding the challenges and solutions for managing pain in those who can no longer communicate their suffering
Victor, a 79-year-old nursing home resident with vascular dementia, can no longer articulate when he's in pain. A stroke left him with aphasia, paralysis, and neuropathic pain in his shoulder. When the pain becomes unbearable, he doesn't cry out or ask for help—instead, he grows agitated, vocalizes in fear, and withdraws from the world around him. Across the globe, millions of people with dementia like Victor experience pain that goes unrecognized and untreated every day, not because caregivers are indifferent, but because dementia has stolen their ability to communicate their suffering in ways we easily understand 5 .
Between 50-80% of people with moderate to severe dementia experience pain daily .
Over 50 million people currently live with dementia worldwide, projected to reach 152 million by 2050 5 .
Dementia isn't a single disease but rather a collection of symptoms affecting thinking, memory, and social abilities severely enough to interfere with daily life. Alzheimer's disease accounts for 50-60% of dementia cases, followed by vascular dementia, Lewy body dementia, and frontotemporal disorders . What makes pain management so challenging is that dementia impacts both the experience and expression of pain in complex ways that vary by dementia type.
Individuals do feel pain but their interpretation and emotional evaluation of that pain differs from cognitively intact individuals. Research shows they may have a higher pain threshold, and their autonomic responses to pain stimuli are often blunted 1 .
People with vascular dementia likely experience more pain due to white matter lesions that may stimulate central pain processing 1 .
The ability to recognize pain as something separate from other sensations diminishes.
Memory of previous pain experiences to use as reference fades.
The vocabulary to describe discomfort becomes increasingly limited.
The executive function to connect pain with potential solutions deteriorates.
In early-stage dementia, self-report might still be possible with modifications. Caregivers can use simple scales with verbal descriptors, repeat questions, allow adequate response time, and tailor their approach to the individual's specific neuropsychological deficits 9 . However, as dementia advances, healthcare teams must increasingly rely on observational methods.
Over 35 observational pain assessment tools have been developed for dementia care, though implementation in clinical practice remains inconsistent 1 5 . These tools typically track behaviors across five categories:
Grimacing, furrowed brows
Moaning, groaning, cursing
Guarding, rocking, rigidity
Aggression, resisting care
Sleep changes, appetite shifts
| Assessment Tool | Key Components | Best For | Special Features |
|---|---|---|---|
| PAINAD | Breathing, negative vocalization, facial expression, body language, consolability | Quick daily assessments | Easy for family caregivers to learn |
| MOBID-2 | Pain indicators during guided movement | Identifying movement-related pain | Reveals pain during activity |
| PACSLAC | Facial expressions, social/emotional, activity, bodily, physiological | Comprehensive assessment | Broad range of behavioral indicators |
| PAIC | Meta-tool combining best elements | Standardizing assessment internationally | Developed by international experts |
Emerging technologies promise to revolutionize pain assessment through digital phenotyping—using everyday sensor data to monitor health behaviors like sleep patterns, movement, and vocalizations 5 . Researchers are developing systems that can:
Non-pharmacological interventions should always be the first consideration in dementia pain management, particularly because older adults with dementia have higher risks for adverse drug reactions 1 . These approaches include:
Massage, gentle movement, repositioning, heat/cold therapy
Music therapy, aromatherapy, pet therapy, calming activities
Meaningful interaction, reassurance, familiar routines
For example, playing music from the person's youth can trigger positive memories and release natural endorphins that reduce pain perception . Similarly, gentle massage of previously injured areas (like a knee that was replaced years earlier) can provide significant relief even without specialized training .
When medications are necessary, clinicians follow the "start low, go slow" principle, with special considerations for the dementia population:
| Medication Type | Benefits | Risks in Dementia | Monitoring Requirements |
|---|---|---|---|
| Paracetamol/Acetaminophen | Effective for mild-moderate pain; generally safe | Limited efficacy for severe pain; "as needed" dosing problematic | Regular scheduled dosing preferred |
| NSAIDs | Anti-inflammatory properties | High risk of GI, renal, cardiovascular events; difficulty detecting side effects | Short-term use only (under 2 weeks) |
| Weak Opioids | Intermediate pain relief | Limited evidence for effectiveness; delirium risk | Avoid long-term use |
| Strong Opioids | Powerful pain relief | Significant side effects including delirium, sedation | Weekly evaluation; try to stop within 6 weeks |
| Gabapentin | Neuropathic pain relief | Associated with increased dementia risk with frequent use 4 7 | Cognitive monitoring essential |
A 2022 quasi-experimental study published in BMC Palliative Care provides compelling evidence for how structured support can improve pain management in dementia care 8 .
The findings demonstrated the powerful impact of ongoing, practical support:
Pain-free intervals significantly lengthened (days)
Frequency of pain events decreased substantially
Staff confidence in pain identification and response
The research highlighted that repeated reflection in case studies allowed staff to develop greater confidence in both identifying and responding to pain. As their "response certainty" improved, they became more proactive in implementing both pharmacological and non-pharmacological interventions 8 .
| Outcome Measure | Baseline (T0) | First Follow-up (T1) | Second Follow-up (T2) |
|---|---|---|---|
| Average Pain-Free Intervals (days) | 4.7 | 22.3 | 37.1 |
| Probability of Pain Events | Reference | 0.54 OR | 0.43 OR |
| Staff Confidence in Pain Identification | Low | Moderate | High |
| Use of Non-Pharmacological Interventions | Limited | Regular | Routine |
The National Institutes of Health is driving substantial research investments in dementia care, with 495 clinical trials for Alzheimer's and related dementias funded as of fiscal year 2024 2 . These include investigations of:
Targeting behavioral and lifestyle factors
Testing existing medications for new applications
The future points toward precision medicine approaches that recognize the unique biological and psychological profiles of each individual with dementia. As research continues to reveal why pain experiences vary across dementia types and individuals, treatments can become increasingly targeted and effective.
Developed by Mayo Clinic specialists, this practical approach offers guidance for caregivers:
Anticipate pain
Look for its signs
Treat it proactively
Avoid comparisons
Revisit strategies
Pain management in dementia represents one of healthcare's most complex challenges, requiring us to listen not just to words, but to behaviors, expressions, and patterns. What emerges clearly from the evidence is that successful pain management demands interdisciplinary collaboration—bringing together neurologists, geriatricians, nurses, social workers, family caregivers, and increasingly, data scientists and engineers 1 .
For the millions living with dementia and the caregivers who support them, proper pain management can be transformative—reducing distressing behaviors, improving sleep and appetite, enhancing social engagement, and ultimately preserving dignity and quality of life.
As research advances, there is genuine hope that emerging technologies will provide new windows into the subjective experience of dementia, helping us understand when pain is present even when words fail. Until then, the most powerful tool remains an attentive, educated caregiver who knows that behind agitation, aggression, or withdrawal may lie a simple message: "I am in pain."
The silent struggle of pain in dementia need not remain invisible. Through continued research, education, and clinical innovation, we can learn to listen to what goes unspoken.