Pain in Dementia: Why It's Often Missed, and How to Spot It

Sudden agitation. Pushing a carer away. Restlessness that wasn't there before. It's easy to read these as the dementia getting worse. Sometimes it is. But sometimes it's pain, and the person simply can't tell you where it hurts, or that it hurts at all.

Why pain gets missed

Dementia can make it genuinely difficult to find the words for pain, to remember it accurately from one moment to the next, or to connect a feeling in the body to its cause. So instead of a clear complaint, pain often shows up sideways, as a behaviour change: agitation, aggression, withdrawal, resisting help with washing or dressing that never used to be a problem. It gets read as "the dementia," when the actual cause is something treatable happening underneath it.

What NICE guidance says

UK clinical guidance (NICE guideline NG97) is direct about this: pain should be considered as a potential cause of behavioural and psychological symptoms of dementia, rather than assuming behaviour changes are simply part of the condition progressing. For people who can't reliably describe their own pain, NICE recommends using a structured observational pain assessment tool, something a GP, nurse or care home may use, that looks at signs like facial expression, body language, and vocal sounds rather than relying on the person being able to say "it hurts."

Signs worth watching for

Physical signs: holding, guarding or favouring a part of the body, wincing when moved or touched, a change in posture, grimacing.

Behavioural signs: new or worsening agitation, aggression, restlessness, calling out, withdrawal, or resisting care that used to be straightforward. A sudden change is often more telling than any single symptom on its own.

None of these prove pain on their own; they're a reason to ask the question, not a diagnosis. But they're worth taking seriously and mentioning to a GP, rather than putting down to the dementia alone.

What to expect from a GP

A GP will usually take a history, examine the area of concern, and may arrange blood tests or a scan to rule out treatable causes, an infection, a hernia, something orthopaedic. Simple pain relief such as paracetamol is often tried first, alongside investigating further, since it's low-risk and can genuinely help while other causes are ruled out. It's not unusual for this to take more than one appointment to get to the bottom of, especially if the person can't describe exactly where or how it hurts.

Keeping a simple record

A short, plain diary genuinely helps: when the distress happens, what part of the body seems affected, what was happening beforehand, and whether anything helped. It doesn't need to be detailed or clinical, just enough to give the GP real information to work with, since they're only seeing a short snapshot in the appointment itself.

A word from The Care Compass

My mum complained a lot about pain as her dementia advanced, holding her stomach, and sometimes her hip. It started with paracetamol, but the pain in her stomach wouldn't go away, so we asked for a GP review. She was sent for a scan to check for a hernia or anything else more serious. It all came back clear, and eventually the pain settled. It genuinely unsettled her while it lasted, and she was on paracetamol for a good while during it. Looking back, it was worth pushing for that review rather than assuming it was just the dementia.

This is general guidance, not medical advice. If you're worried someone may be in pain, please speak to a GP.

You don’t have to navigate it alone.