When someone you love has dementia, one of the hardest changes to face is the loss of words. Over time, your loved one may no longer be able to say “my hip hurts” or “I have a headache.” Yet pain doesn’t disappear just because it can’t be described. Research and clinical experience consistently show that pain in people with dementia often goes unnoticed and undertreated, simply because they cannot report it in the usual way. As a caregiver, you become the translator — learning to read the body and behavior when words are no longer available.
Why Pain Hides Behind Dementia
Dementia doesn’t make pain go away, and it doesn’t make your loved one feel it any less. What it changes is their ability to notice it, understand it, and tell you about it. Someone in the middle or later stages may feel real discomfort but be unable to connect it to a cause or find the words to explain. Sometimes pain gets expressed as “difficult” behavior instead — restlessness, calling out, or refusing care — and it’s easy to mistake these for the dementia itself rather than a signal that something hurts.
Common sources of pain in older adults are worth keeping in mind: arthritis and joint stiffness, dental problems, constipation, urinary tract infections, pressure sores from sitting or lying too long, and old injuries. In Florida’s warm climate, dehydration and skin irritation can add to the discomfort. Because these are so common, it’s wise to assume that unexplained changes in your loved one might have a physical cause worth exploring.
Learning to Read the Signs
When someone can’t say “it hurts,” their face, body, and behavior often speak for them. You know your loved one better than anyone, so trust the sense that “something is off.” Watch for signals such as:
- Facial expressions: grimacing, frowning, a furrowed brow, clenched jaw, or a frightened, tense look.
- Sounds: moaning, groaning, sighing, crying out, or noisy breathing, especially during movement.
- Body language: guarding or rubbing a body part, tensing up, pulling away when touched, rocking, or becoming very still and withdrawn.
- Changes in behavior: new agitation or aggression, resisting care like dressing or bathing, pacing, or unusual restlessness.
- Changes in daily patterns: eating less, sleeping poorly, or seeming more confused or withdrawn than usual.
A helpful clue is timing. If your loved one winces when standing, resists having an arm lifted during dressing, or becomes upset only during certain activities, that pattern can point you toward where the pain may be.
Gentle Ways to Respond
Once you suspect pain, you can do a lot to bring comfort while you seek answers. Approach slowly and calmly, letting your loved one see your face and hear a reassuring voice before you touch them. Try simple, warm comfort measures: repositioning them, offering a cushion or supportive chair, applying a warm or cool compress if appropriate, and making sure they aren’t sitting too long in one position. Keep the room calm and unhurried, since anxiety and pain often feed each other.
You can also gently ask, even late in the illness. Short, simple questions sometimes reach through: “Are you hurting?” or “Show me where it hurts.” Pointing to your own body or using a simple smiley-to-frowning face scale can help. Whatever you learn, write it down — what you saw, when it happened, and what seemed to ease it. These notes become valuable information for the doctor.
When to Call the Doctor
Pain is not something your loved one should simply endure, and it should never be dismissed as “just the dementia.” Because untreated pain can worsen confusion, agitation, and sleep, getting to the cause truly improves quality of life. Contact your loved one’s healthcare provider when you notice a sudden change in behavior, signs of pain that don’t ease with comfort measures, or any indication of infection, injury, or illness. Bring your written notes, and don’t hesitate to ask directly whether pain could be behind what you’re seeing. A provider can check for treatable causes and discuss safe options for relief tailored to your loved one’s needs.
You Are Their Voice
Becoming the interpreter of someone else’s discomfort is a heavy and loving responsibility. Please be gentle with yourself — no one reads every sign perfectly, and the fact that you’re paying attention already makes an enormous difference. Recognizing pain is often a team effort, and you don’t have to shoulder it alone.
If you’d welcome an extra set of caring, experienced eyes at home — someone who can notice subtle changes, offer comfort, and give you room to rest — the team at Dementia Companions is here to support Florida families with compassionate in-home companion care.
This article is for general information and support and is not a substitute for medical advice. Please consult your loved one’s healthcare provider for guidance specific to their situation.
