Hey friends — I’m so glad you’re here. Today, I want to dig into an important topic that’s often misunderstood: pain in people living with dementia.
There was once this wild (and totally wrong) idea floating around that folks with dementia didn’t feel pain. Some people believed that the disease process somehow blocked the body’s ability to register pain. But here’s the truth: people with dementia absolutely feel pain, just like anyone else.
The challenge? As dementia progresses and communication skills decline, it becomes harder for them to tell us what’s hurting. That makes it way too easy for pain to go untreated, causing unnecessary suffering and a huge hit to quality of life. So how can we spot pain when words aren’t available?
Let’s break it down.
Two Types of Pain to Keep in Mind:
- Acute Pain: Sudden and short-term pain, like when you get an injury or infection.
- Chronic Pain: Ongoing pain that can last for months or even years, often linked to conditions like arthritis. It might stick around constantly or come and go like an unwelcome guest.
Both types can show up in people living with dementia — and learning to read the signs can make a big difference.
6 Non-Verbal Signs of Pain in People with Dementia:
Since verbal communication becomes tricky as dementia progresses, here are some things to watch for:
- Facial grimacing: That classic “ouch” look — even subtle changes in expression can be clues.
- Changes in heart rate, blood pressure, or sweating: Pain often sends the body into overdrive.
- Vocal changes: New or increased groaning, calling out, or shouting.
- Withdrawn behavior: A sudden lack of interest in things they used to enjoy, or staying in bed more.
- Loss of appetite: They might stop eating if chewing or swallowing causes discomfort.
- Anger, aggression, or agitation: Let’s be honest — we all get cranky when we’re in pain.
Of course, some of these signs could point to other issues, but pain should always be on the checklist when trying to figure out what’s going on.
Common Causes of Pain for People with Dementia:
It’s not just bumps and bruises — here are a few culprits that might not be as obvious:
- Constipation or urinary tract infections (UTIs): These are sneaky but super uncomfortable.
- Sitting or lying in one position for too long: Stiff joints or pressure sores can develop.
- Undetected or old injuries: Past injuries can flare up.
- Dental problems: Gum infections, abscesses, or mouth sores.
- Infections: These can cause all sorts of discomfort without clear symptoms.
What to Do if You Suspect Pain:
So you’ve noticed something’s off — what now?
- Track it: Write down what you observe, when it happens, and any patterns you notice. This helps you present a clear picture to the doctor.
Example: “Mom grimaces every time she gets up from her chair, especially in the morning.”
- Advocate: Don’t let concerns get brushed off. Our healthcare system already has a bad habit of dismissing pain — especially for women and women of color. So speak up.
- Talk to the doctor: Whether it’s a scheduled appointment or something urgent, bring up pain concerns and ask about safe treatments (Tylenol? Heat or ice?). Be proactive so you’re not scrambling when something comes up.
Final Thoughts
Nobody should have to live with unmanaged pain, and that includes folks living with dementia. By being observant, tracking changes, and advocating for proper care, you can help improve their comfort and quality of life.
Got questions or want to connect? Reach out! You can find me at PerdueArtTherapy.com or SivanPerdue.com to schedule a discovery call, learn more about art therapy, or just pick my brain.
And if you found this post helpful, please share it with someone who might need it.
Thanks for reading, friends — take care out there. 💛
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