S3 Ep 10 Dementia’s Secret Battle: How to Detect Pain Before It’s Too Late

Hello my friends and welcome back to the Caregiver Secrets Podcast! What is this show about you ask. Well this is the show where we share practical advice, heartfelt stories, and encouragement for those who give everything to care for loved ones. I am so glad that you decided to join me today. If you are feeling alone on this journey, you are in the right place to discover that you are not alone. Together, we’ll share the joys and challenges of caregiving with compassion and support.

My friends, this is not medical, financial, or health advice. Please consult with the appropriate professionals for specific concerns. My role is to inform and support you as best I can, but the actions you take are totally up to you. With that said, let’s get to work.

Listen to this story which I believe perfectly highlights what we are discussing today.

David never imagined he’d become his mother’s primary caregiver. He was in the middle of his career, traveling often for work, and juggling his own life when his mother’s dementia took a turn. It started with misplaced keys and forgotten appointments, but soon she was struggling to communicate even her basic needs. Then came the moment that changed everything—one evening, she sat in her chair, clutching her stomach in pain, unable to tell him what was wrong.

He called her doctor, but with no clear symptoms other than discomfort, they couldn’t pinpoint the problem over the phone. “If she’s not running a fever, just monitor her,” they said. But something in David’s gut told him that wasn’t enough. His mother, once so strong and independent, was now trapped in a body that wouldn’t cooperate, in a mind that couldn’t express what was wrong.

He studied her closely. She grimaced when she shifted in her chair. She was rubbing her shoulder—was the pain radiating? He noticed she wasn’t eating as much as usual, but when he asked if she was hungry, she simply shook her head. He remembered reading that people with dementia sometimes manifest pain differently. Instead of groaning or saying "it hurts," they might become agitated, restless, or even refuse food.

He knew he needed to act. He took her to urgent care, insisting something was wrong. A nurse looked skeptical until David described the changes in her behavior. “She’s usually calm, but today she’s been unusually irritable. She’s not eating, and she seems uncomfortable when she moves.”

Tests confirmed what David feared—she had a urinary tract infection, a common but dangerous issue for dementia patients. Left untreated, it could have led to confusion, increased agitation, or even hospitalization.

That night, as his mother rested, David felt a wave of relief. He had trusted his instincts and, more importantly, he had learned to read the signs of pain in a loved one who could no longer verbalize them.

This is so important. I have dealt with this personally too many times to mention. And almost every time I had to go with my gut and push past the skepticism of trained medical professionals. I could not let their reticence keep me from getting the proper care for my mom. As I have mentioned before in another episode, this persistence and following my gut has saved my mom’s life more than once. For this I am eternally grateful the God.

Recognizing pain in someone with dementia is challenging because they may not express it in ways we expect. Studies show that nonverbal cues—facial expressions, body movements, and changes in behavior—are often the clearest indicators. Research from the Alzheimer’s Association suggests that pain is frequently overlooked in dementia patients because they may not have the words to say, “This hurts.” Instead, their discomfort might come out as agitation, aggression, or withdrawal.

Some common signs of unspoken pain include:

• Increased restlessness or pacing
• Grimacing, wincing, or sudden stiffness
• Moaning or other vocalizations, even when at rest
• Withdrawal from social interactions or refusing food
• Unexplained aggression or anxiety

Pain can also trigger behaviors that seem unrelated. For instance, a person who suddenly refuses to sit down may have hip pain. Someone resisting being dressed may have joint stiffness or tenderness in a specific area. This is why observation is key.

One of the most effective tools for assessing pain in dementia patients is the PAINAD Scale—the Pain Assessment in Advanced Dementia tool. It evaluates things like breathing, facial expressions, and body language to help caregivers determine discomfort levels. If you suspect pain but aren’t sure, tracking behaviors over time can help doctors pinpoint the issue. Please look this up. Many of us do this naturally as caregivers, however, I love how this scale spells things out and gives them a score. I have not used this in the past, however, I plan to start using this going forward. Give it a try and let me know what you think.

So what can you do?

1. Observe First, Then Act – Pay close attention to changes in behavior, even subtle ones. Trust your gut when something feels off.
2. Use Gentle Touch – Lightly pressing on different areas of the body can sometimes reveal a reaction, like a flinch or a wince.
3. Track Patterns – If your loved one is more agitated at night or after eating, it may indicate pain triggered by a specific issue.
4. Advocate with Medical Providers – If a doctor dismisses concerns, push for an evaluation. You know your loved one best. Be persistent.
5. Make Adjustments – A different chair, softer clothing, or a change in diet might relieve certain discomforts before they become bigger issues.

Most importantly, remember this: Your attention, patience, and advocacy are lifelines for your loved one. The ability to recognize pain when words fail is one of the most powerful caregiving skills you can develop.

One of the mantras from Get Risen that fits here is: “I am strong and alive, and I am destined to thrive.” Caregiving can be overwhelming, but recognizing pain and advocating for relief is one way to ensure that you’re not just surviving this journey—you’re actively making a difference in your loved one’s quality of life.

I’d love to hear from you. Have you ever had to advocate for a loved one’s pain to be taken seriously? Share your story in the comments or email me. And if this episode resonated with you, don’t forget to subscribe and share it with another caregiver who might need it today.

And don’t forget to join our Facebook community at bit.ly/CaregiverSecretsOnFacebook, where we share stories, tips, and encouragement. Together, we can build a village of support and make this journey a little lighter.

Finally, I’d love for you to grab a free copy of my book, Get Risen. It’s written by a family caregiver for caregivers, and you can get it at bit.ly/GetRisen.

Until next time, take a breath, trust your instincts, and know that you’re doing an incredible job. See you soon. And remember, You’ve got this.