Signs of Pain in Dementia: What to Look For When They Can't Tell You | CarePrints
She is not going to tell you.
Not because she's stoic, though she might be. Because the sentence required — my hip hurts, it started a few days ago, it's worse when I stand — depends on holding a sensation in mind, locating it, comparing it to yesterday, and finding four or five specific words. Somewhere in the middle of this illness, that whole chain comes apart. The pain doesn't go anywhere. The ability to report it does.
This is one of the most consequential gaps in dementia care, and it produces a predictable outcome: people with dementia are treated for pain substantially less often than people without it, despite having every reason to be in the same amount of it. Same arthritis. Same old back injury. Same bad tooth. Fewer painkillers.
And the pain doesn't stay quiet. It comes out sideways, as behaviour — which then gets treated as behaviour.
What it looks like instead
Untreated pain in someone who can't report it tends to present as one of these:
New or worsening agitation. The most common presentation by far, and the most commonly misread. A person who has become restless, resistant or sharp over the last few weeks, with no other obvious change, is a person worth checking for pain before anything else.
Resistance to care. Particularly to being dressed, washed, moved or transferred. If getting her into the shower has become a fight in the last month and used to be manageable, consider that something may hurt when you lift that arm.
Guarding. Holding one part of the body still, or bracing it. Not putting weight on one side. Refusing to move a limb that used to move.
Facial expression. Grimacing, a furrowed brow that stays, a tightened jaw, eyes squeezed shut — especially during movement rather than at rest. Watch during transfers. That's where it shows.
Vocalising. Groaning, calling out, repetitive noise, particularly when being moved. Sometimes the calling out that seems random is not random at all; it's timed to standing up.
Withdrawal from something she used to like. A person who stops joining an activity she enjoyed for a year is telling you something. Often what she's telling you is that sitting in that chair for forty minutes hurts.
Changes in sleep or appetite. Both are non-specific, and both are frequently pain.
Where it usually is
When it turns out to be pain, it's usually one of a short list.
Arthritis, which is close to universal in this age group and which nobody thinks about because it isn't new. Old injuries — the shoulder, the knee, the back that has been bad since 1988. Dental problems, which are badly under-checked in this population and can be severe. Constipation, which is extremely common, causes real distress, and is frequently the entire answer. Urinary tract infections. Pressure areas, if she's sitting or lying a lot. Ill-fitting shoes, ingrown nails, an untrimmed toenail pressing wrong.
That last cluster sounds trivial. It isn't. Foot pain is a well-documented and routinely missed cause of agitation and refusal to walk, and it is solved by someone looking at the feet.
How to actually investigate it
The useful move is to stop treating each incident as an event and start treating the month as a pattern.
Keep a written record for two weeks. Date, time, what happened, what was happening just before. You are looking for clustering. Does the agitation happen at the same time of day? Always around transfers? Always after sitting a long stretch? Always during dressing? A pattern tied to movement is a strong signal for pain in a way that a pattern tied to the hour is not.
Watch during movement, not at rest. Most of the observable signs only appear when a painful part is being used. A person can look entirely comfortable in a chair and grimace every time they stand.
Check the obvious physical things yourself. Look at the feet. Look in the mouth if she'll let you. Track bowel movements, unglamorous as that is — a week without one explains a great deal of misery.
Take the record to her doctor and ask the question directly. Not "she's been agitated." Rather: I think she may be in pain and unable to say so. Here's two weeks of observations. Can we investigate that before we consider anything else?
That framing matters. Behaviour change in dementia is sometimes met with a prescription for the behaviour. A caregiver who arrives with a written pattern and a specific hypothesis changes the shape of the appointment.
There is a common clinical approach in which a doctor will trial a regular, scheduled pain reliever for a period and watch whether the behaviour settles — treating the response as the diagnostic. It's reasonable and it's often revealing. It is also entirely a conversation for her physician, not something to begin at home, and dosing decisions in older adults are genuinely complicated by kidney function, liver function, and everything else she's taking.
Why this is worth your attention this month
September is Pain Awareness Month, which is one of those observances that usually lands somewhere far from this audience. It shouldn't.
Because among all the things that go wrong in dementia care, this one is unusually fixable. Not the disease — the disease isn't fixable. But a woman who has been labelled agitated for five months, and who turns out to have an abscessed molar or a hip that has been grinding since spring, can be made substantially more comfortable inside a fortnight.
That happens. It happens more often than most families would believe, and it usually happens because somebody stopped asking what was wrong with her behaviour and started asking what was hurting.
She's not going to tell you. That part is fixed.
Whether anyone goes looking is not.
This article is for general information and is not medical advice. Do not begin, change or increase any pain medication without consulting the person's physician — dosing in older adults carries real risks that depend on their individual health and other medications.