When They Can't Tell You It Hurts

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Your loved one flinches when you help them stand. They're refusing meals they once enjoyed. They seem agitated in the evenings, pacing and unable to settle. Is it the dementia progressing—or are they in pain they can't express?

You've learned to decode so much already. The way certain sounds trigger anxiety. How a specific time of day brings confusion. The difference between "I want to go home" meaning they're overwhelmed versus actually wanting to leave. But pain? Pain in someone who can no longer clearly communicate adds another layer of heartbreak to an already difficult journey.

Here's what nobody tells you when dementia enters your life: pain doesn't disappear just because someone can't articulate it anymore. And untreated pain doesn't just cause physical suffering—it amplifies confusion, increases agitation, disrupts sleep, and steals away those precious moments of connection you're fighting so hard to preserve.

I remember watching my father become increasingly restless one week, convinced the dementia was accelerating. It took a visiting nurse's observation to realize he was pressing his hand against his lower back repeatedly. A urinary tract infection. Once treated, his agitation decreased significantly. I'd been looking for cognitive decline when I should have been looking for physical distress.

The truth is, pain management in dementia isn't about achieving perfection—it's about becoming a detective, an advocate, and a voice for someone who may have lost theirs. It's about recognizing that your observations matter more than any medical test, and that providing comfort is one of the most profound expressions of love.

Let's walk through this together, because you shouldn't have to navigate this alone.

Recognizing Non-Verbal Pain Signals: Becoming a Pain Detective

When words fail, the body speaks volumes—but you have to know what to look for. Pain in dementia often disguises itself as behavioral changes, and what healthcare providers might dismiss as "just the dementia" may actually be your loved one's only way of screaming, "Something hurts."

Start with facial expressions. You know your person's face better than anyone. Look for grimacing, rapid blinking, furrowed brows, or a clenched jaw—especially during movement or specific activities. My father's "concentration face" looked different from his pain face, though both involved frowning. The difference was subtle: pain brought tension around his eyes that concentration didn't.

Body language tells stories too. Notice guarding—protecting a specific area by holding it, avoiding touch, or positioning themselves to minimize contact with that spot. Watch for restlessness that seems different from usual wandering. Pain-related restlessness often includes rubbing or pressing certain areas, shifting weight repeatedly, or an inability to get comfortable despite trying multiple positions.

Behavioral changes can be your biggest clue. Sudden aggression in someone typically gentle, especially during personal care, often signals pain during movement or touch. Refusing favorite foods might indicate mouth pain, swallowing difficulty, or abdominal discomfort. Withdrawal from activities they usually enjoy—particularly those involving movement—deserves investigation. And that increase in confusion or agitation you're seeing? Pain clouds thinking even further, making existing cognitive challenges worse.

Pay attention to changes in sleep patterns, eating habits, and daily routines. Is your loved one suddenly waking frequently at night? Refusing to bear weight on one leg? Resisting sitting in their favorite chair? These aren't necessarily dementia progression—they're potentially pain signals in disguise.

Vocalization matters too, even without clear words. Moaning, groaning, calling out, or repetitive sounds often accompany pain. Sometimes it's what they're not saying that matters—becoming quieter or more withdrawn than usual can indicate someone who hurts but has given up trying to communicate it.

Create your own pain observation log. Note the time of day, what was happening, specific behaviors you observed, and what seemed to help or worsen the situation. Patterns emerge when you track consistently. You might discover pain increases during morning stiffness, worsens before medication times, or improves after warm baths.

Trust your gut. If something feels different, if your intuition says "this isn't right," you're probably picking up on subtle changes others might miss. You're the expert on your person. That matters more than you realize.

Working with Healthcare Providers: Becoming Your Loved One's Voice

Here's the frustrating reality: a fifteen-minute doctor's appointment can't capture what you observe over days and weeks. Your loved one might not exhibit pain signals in that clinical setting, or they might seem "fine" during the brief examination. This is where your advocacy becomes critical.

Prepare for appointments like you're building a legal case—because in a way, you are. Write down specific observations before the visit: "Monday morning, grimaced and pulled away when I helped them dress, particularly when lifting their right arm. Tuesday evening, refused dinner but ate breakfast fine. Wednesday, moaned during the night, specifically when rolling onto their left side." Concrete details carry more weight than "they seem uncomfortable."

Bring your pain observation log. Show the patterns. Healthcare providers respond to documentation—it transforms your concerns from subjective worry into objective data. If you've noticed that pain behaviors decrease after certain interventions, share that too. It helps providers understand what's already been tried and what shows promise.

Ask specific questions. Don't just accept "it's the dementia." Try: "What physical conditions could cause these specific behaviors? Could this be arthritis pain? A dental issue? Constipation? A urinary tract infection?" Push gently but persistently for investigation beyond cognitive symptoms. Request a full pain assessment using tools designed for people with dementia—yes, these exist, and you can ask for them by name, like the PAINAD scale or Abbey Pain Scale.

Discuss both pharmaceutical and non-pharmaceutical options. Ask: "What's the gentlest medication we could try first? What are the side effects I should watch for? How long before we'd see improvement? What non-medication approaches would you recommend? Should we involve a pain management specialist or palliative care team?"

Don't be afraid to seek second opinions or specialist input. Pain management specialists, geriatricians, palliative care teams, and even dentists can offer insights your primary care provider might miss. Palliative care isn't just for end-of-life—it's expert symptom management that can dramatically improve quality of life at any stage.

Be honest about medication management challenges. If you're struggling with complex medication schedules, if your loved one resists taking pills, if you're worried about side effects or interactions—say so. There might be simpler solutions: patches instead of pills, liquid formulations, combination medications that reduce pill burden, or adjusted timing that works better with daily routines.

Request regular pain reassessments. What works today might not work next month. Bodies change, dementia progresses, and pain management needs adjustment over time. Schedule follow-ups specifically to discuss pain management, not just during crisis moments.

And remember: you can fire providers who consistently dismiss your observations or make you feel like you're overreacting. Find healthcare partners who respect your expertise on your loved one and treat you as part of the care team, not an obstacle to efficient appointments.

Non-Pharmaceutical Approaches: Comfort Beyond Medication

Before we even talk about pills, let's explore approaches that honor your loved one's dignity while providing genuine relief. Sometimes the most powerful pain management comes from human connection, environmental adjustments, and gentle physical interventions.

Physical comfort measures can work wonders. Warm baths or showers provide both pain relief and sensory comfort—the warmth soothes muscles while the routine can be calming. Heat pads for arthritis pain or cold packs for inflammation offer targeted relief. Gentle massage, even just holding and rubbing their hand or foot, releases tension and provides pain-relieving touch. Position changes every couple of hours prevent pressure pain and stiffness—those extra pillows supporting sore joints aren't indulgent, they're therapeutic.

Movement and exercise adapted to current abilities help manage pain long-term. Gentle range-of-motion exercises, even just moving limbs through their natural movement patterns, prevent stiffness. Short, slow walks maintain mobility without overtaxing. Chair exercises can be powerful—arm circles, seated marches, gentle twists. The goal isn't fitness; it's preventing the pain that comes from immobility.

Environmental modifications reduce pain-triggering situations. Raised toilet seats and grab bars decrease strain on arthritic joints. Comfortable, supportive seating prevents back and hip pain. Proper lighting reduces falls and the injuries that follow. Adaptive clothing eliminates painful overhead arm movements during dressing. Non-slip mats prevent painful positioning during bathing. Sometimes preventing pain beats treating it.

Distraction and engagement work through redirecting attention. Music therapy can reduce pain perception—favorite songs from their past often work best. Gentle hand activities like sorting buttons or folding soft fabrics provide tactile engagement. Looking at photo albums together offers emotional comfort. Pet therapy or stuffed animals provide soothing companionship. Reminiscence activities connect them to joy rather than discomfort. The mind can only process so much at once; engaging it elsewhere turns down pain's volume.

Touch and connection matter immensely. Hand holding, gentle stroking, or simply sitting close provides comfort beyond words. Your calm presence when they're in pain helps regulate their nervous system—they borrow your peace when they've lost their own. This isn't just feel-good advice; it's science. Human connection literally changes pain perception.

Consider complementary approaches that you feel comfortable with: aromatherapy with lavender or chamomile for relaxation, gentle music or nature sounds for environmental comfort, or even breathing exercises done together—you breathe slowly, they often unconsciously mirror you, which can reduce pain-related tension.

Create a comfort toolkit. Keep items readily available: heating pad, favorite soft blanket, hand lotion for gentle massage, preferred music playlist, comfort objects, and simple distraction activities. When pain strikes, you're not scrambling—you're ready with multiple options to offer relief.

Medication Considerations: Navigating Pharmaceutical Pain Relief

Medication for pain management in dementia requires careful balance—providing relief without causing additional confusion, falls, or unwanted side effects. This is where partnership with healthcare providers becomes essential, but understanding the landscape helps you ask better questions and advocate more effectively.

Start with the safest options first. Acetaminophen (Tylenol) is often the first-line choice for mild to moderate pain in older adults—it's generally well-tolerated and doesn't carry the risks of anti-inflammatories. Regular, scheduled doses often work better than "as needed" dosing for chronic pain, maintaining consistent pain control rather than chasing pain after it intensifies.

Understand the risks of common pain medications in dementia. NSAIDs like ibuprofen can increase fall risk, cause gastrointestinal bleeding, and affect kidney function—especially concerning in older adults. They're not automatically off-limits, but they require careful monitoring and might not be appropriate for long-term use. Your healthcare provider should discuss these risks with you explicitly.

For more severe pain, opioids might be necessary—and that's okay. The stigma around opioids has left many people with dementia suffering needlessly. When used appropriately, with medical supervision, they can dramatically improve quality of life. However, they do carry risks in dementia: increased confusion, constipation (which then causes more pain), increased fall risk, and need for careful monitoring. Start low, go slow, and watch closely for side effects.

Topical medications offer targeted relief with fewer systemic side effects. Lidocaine patches for localized pain, capsaicin cream for arthritis, or compound creams prescribed by pain specialists can provide relief without the cognitive effects of oral medications. These are often underutilized but worth discussing.

Watch for medication interactions carefully. People with dementia often take multiple medications, and adding pain relievers to the mix creates potential for problems. Certain combinations increase fall risk, confusion, or dangerous interactions. Keep an updated medication list and share it with every healthcare provider, pharmacist, and care team member.

Monitor for side effects specifically. In dementia, side effects might not be reported directly—instead, you'll see increased confusion, new agitation, changes in balance, or altered sleep patterns. If new behaviors emerge after starting a pain medication, consider whether the medication itself is the problem rather than the solution.

Consider scheduled pain medication rather than "as needed" for chronic pain. Waiting until someone with dementia can request pain medication means they suffer longer—they might not remember to ask, might not be able to articulate their need, or might not connect their discomfort with the solution. Scheduled dosing prevents pain rather than chasing it.

Understand that medication needs will change over time. What works today might need adjustment as dementia progresses or as pain sources evolve. Regular reassessment isn't optional—it's necessary for effective, compassionate care.

Have honest conversations about goals of care. At some point, you might need to discuss whether aggressive pain management that increases sedation aligns with your loved one's values and your caregiving goals. There's no right answer—only what honors your specific situation and your loved one's dignity.

Finally, remember that medication is just one tool. The most effective pain management usually combines pharmaceutical and non-pharmaceutical approaches, creating layers of relief that address both physical discomfort and emotional distress.

Moving Forward with Compassion

Pain management in dementia caregiving isn't a problem you solve once—it's an ongoing practice of observation, advocacy, adjustment, and compassion. Some days you'll get it right, reading signals perfectly and providing relief before distress escalates. Other days, you'll miss cues or feel helpless watching someone you love suffer despite your best efforts.

You're navigating something inherently difficult: speaking for someone who can no longer speak for themselves, interpreting needs through the fog of cognitive decline, and making decisions that balance multiple competing concerns. That you're seeking this information, that you're committed to recognizing and addressing pain—that already makes you an extraordinary caregiver.

Pain management is an expression of love and dignity. It says, "Your comfort matters. Your suffering isn't invisible. I will keep trying until I find what helps." That commitment—that persistent, thoughtful attention to their wellbeing—honors your loved one's humanity even as dementia changes who they were.

You won't get this perfect. None of us do. But you can get better at it, building skills and confidence as you learn your person's unique pain language. And in those moments when you notice the grimace soften, when you see them relax after an intervention, when you've successfully advocated for better care—those victories matter profoundly.

Be as gentle with yourself as you're trying to be with them. This work is hard, and you're doing it with love.

Your Pain Management Action Plan

This Week:

• Start a pain observation log. Note date, time, specific behaviors, situations that seem to trigger or worsen symptoms, and what (if anything) provided relief.

• Review current medications with your pharmacy or provider to understand which ones might help or hinder pain management.

• Create a comfort toolkit with readily accessible items: heating pad, soft blanket, hand lotion, favorite music, and simple distraction items.

• Schedule that doctor's appointment you've been putting off to discuss your pain concerns. Don't wait until the next regular visit if you're seeing consistent pain signals.

This Month:

• Practice identifying three different non-verbal pain signals specific to your loved one. Write down what you observe so you can articulate it clearly to healthcare providers.

• Try at least three non-pharmaceutical pain relief approaches to see what your loved one responds to best. Track what works and what doesn't.

• Review and update your loved one's comprehensive medication list, including over-the-counter medications, supplements, and topical treatments.

• Research and consider requesting a pain assessment using dementia-specific tools (PAINAD or Abbey Pain Scale) at your next healthcare visit.

• Make environmental modifications that could prevent or reduce pain: better seating, grab bars, raised toilet seat, improved lighting, or adaptive clothing.

Ongoing:

• Continue daily pain observations, looking for patterns in timing, triggers, and relief factors. Review your log weekly to identify trends.

• Maintain regular communication with healthcare providers about pain management effectiveness. Don't wait for scheduled appointments if pain isn't controlled.

• Build your library of comfort measures—keep adding techniques that work and discarding those that don't.

• Reassess pain management every 2-3 months or whenever you notice changes in behavior, function, or dementia progression.

• Connect with other caregivers through support groups (online or in-person) to learn what pain management strategies have worked for others.

• Practice self-compassion. Some days you'll identify and relieve pain effectively. Other days you'll struggle. Both are part of the journey.

• Remember that seeking help from pain specialists, palliative care teams, or geriatricians isn't giving up—it's advocating for better care.

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