The misunderstanding that costs the most
Your mother has dementia. For a few weeks now she has been shouting during personal care, pushing hands away, calling out at night, eating less. At the review someone says the sentence that ends the discussion: «the illness is progressing.» Then comes the suggestion — something in the evening, «just to settle her».
Pause on the possibility almost nobody raises first: what if she is in pain?
Because someone who can no longer say «my hip hurts» has not stopped hurting. She has only stopped being able to say it. The pain comes out anyway — as behaviour: resisting personal care, lashing out at exactly the moment she is being moved, calling out, refusing food, awake all night. Or the opposite: a quiet withdrawal in which she asks for nothing. All of it gets recorded as «behaviours that challenge».
And there is the inversion that ruins everything: a pain problem is read as a psychiatric problem and gets a psychiatric drug. She settles — not because the pain has gone, but because she is too sedated to show it. The symptom disappears. The cause stays and keeps doing harm.
Why it happens so often
It is not bad faith. Pain in care home residents is almost always present and almost never looked for:
- Arthritis in the hip, knee, shoulder and spine — pain that shows on movement, which is exactly during transfers and personal care.
- Old fractures, sometimes years back.
- Her mouth: dentures that no longer fit, an abscess, inflamed gums. Nobody looks inside. Access to NHS dentistry for care home residents is one of the widest gaps there is.
- Pressure ulcers and dressing changes, which hurt while they are being done.
- Stubborn constipation and urinary retention: real pain, simple to fix, almost never suspected.
- Neuropathy, post-stroke pain, ingrown toenails, feet nobody has looked at.
The paradox is that the resident with advanced dementia is most likely to be in pain and least likely to be given a painkiller.
The lever here: national guidance already puts pain first
This is the part most families do not know, and it changes the conversation immediately. NICE guidance on dementia is explicit that when someone becomes distressed or agitated, you look for and treat the clinical or environmental causes first — pain among them — before reaching for antipsychotic medication, which is reserved for a narrow set of circumstances and is meant to be reviewed and stopped, not continued indefinitely.
So «we've started her on something to settle her» is not the end of a clinical process. It is a step that national guidance says should come after the search for a cause, not instead of it.
Which gives you the sentence worth taking from this article:
«Which pain assessment tool have you used, when, and what was the score?»
Not opinion against opinion — a record. And the possible answers tell you everything. If they show you a tool and a score, the home is doing its job. If they say «she doesn't seem to be in pain», nobody has assessed. If they say «she can't tell us, so we can't assess it», the answer is below, and it is the most important part of this article.
Two more things are on your side. Every care home resident should have access to a structured medication review through the NHS team aligned to the home under the Enhanced Health in Care Homes arrangements — you can ask when hers was last done and request one. And the home is regulated by the CQC, whose inspection reports are public and which takes information of concern from families directly.
«She can't tell us» does not mean «it can't be measured»
Asking someone with advanced dementia «out of ten, how bad is the pain?» does not work — that much is true. But the right conclusion is not that pain cannot be measured. It is that a different tool is used.
For people who cannot self-report there are observational tools designed for exactly this: the Abbey Pain Scale is the one most widely used in UK care homes, and PAINAD is common too. They score facial expression, vocalisation, body language, physiological change and behaviour. No test, no cooperation required — just somebody watching for a few minutes, above all while she is being moved.
So «not assessable» is not a clinical finding. It describes a tool that was not used.
The «as required» trap
Look at the MAR chart and find the two letters that decide everything: many painkillers are prescribed PRN — as required. For an alert resident that is sensible; she asks when she needs it.
For someone who cannot ask, «as required» means never in practice. The medicine exists on the chart, never reaches the person, and the paperwork looks correct. It is one of the most common and least visible failures in care home medicines management.
Which gives you the second question — and a concrete proposal you can make:
«Can we try regular pain relief for a week and see whether the behaviour changes?»
This is the analgesic trial: simple pain relief given at fixed times — not as required — for a defined period, and then you watch. If the agitation eases, you have your answer and you have avoided an antipsychotic. If nothing changes, you have ruled out pain with real information instead of an impression. It is a reasonable, low-risk proposal any GP can consider — and asking for it puts you somewhere other than «the family is complaining».
What you can see yourself, with no clinical training
- Visit once during personal care or a hoist transfer, not mid-afternoon when she is sitting still. Joint pain shows on movement: the wince, the hand that pulls away, the body that stiffens when someone takes her shoulder.
- Watch her face while she is moved: furrowed brow, eyes screwed shut, a drawn mouth. That is what the Abbey scale looks at.
- Look inside her mouth. Genuinely. The most common cause and the least looked for.
- Feel her feet: long nails, ingrown nails, toes riding over each other, shoes that no longer fit.
- Ask when her bowels last moved. An inelegant question and a clinically excellent one.
- Notice whether the agitation has a time. If it comes at the same hour every day — at getting up, at changing, before a dressing change — it is not a mood. It is an event.
Get it written down
What you win in conversation is gone at the next handover. Ask for it in the care plan, with a named person and a frequency: «observational pain assessment twice weekly and before personal care»; «analgesia reviewed at seven days». A written goal is checkable — at the next review you simply ask whether it happened.
If nothing changes
In order: the GP and the home manager, then in writing — an email is enough, it creates a date — then the provider's formal complaints procedure, then the CQC and, if the placement is council-funded, the local authority that commissions it. Where the care is NHS-funded, the relevant NHS complaints route applies. You can also ask for a referral to the community palliative care team: palliative care is not only for the last days of life, and long-missed pain is exactly what it is good at.
On tone: you are almost never dealing with bad faith, but with an organisation that has not looked in this direction because nobody asked it to. Asking which tool was used and what it showed accuses no one — it asks for something that should already be in the notes.
When the home is the wrong home
Sometimes the answer is not «ask again» but «different home». A home where pain is assessed with a tool and recorded is a different product from one where agitation is switched off with a tablet.
That is where Curalune helps. We look at your situation, tell you which homes near you are realistic, and what to ask each one — including how they assess pain in residents who cannot report it. The case review costs £69 and takes a few minutes to start. If you don't receive at least 3 homes matching the area and criteria you gave us, we refund you in full. Start here
The short version
- Someone who cannot say «it hurts» shows it as behaviour: resisting care, lashing out, sleepless nights, refusing food, withdrawal.
- That behaviour often gets a psychiatric drug — the wrong medicine for a real problem.
- National guidance says to look for and treat causes, pain included, before antipsychotics, and to review them rather than continue them.
- «Not assessable» is false: the Abbey Pain Scale and PAINAD exist for people who cannot self-report.
- Watch for painkillers prescribed PRN: for someone who cannot ask, that means never.
- Propose regular pain relief for a week, ask when her structured medication review was, and visit during personal care.
This article is general information and does not replace medical advice or an individual clinical assessment. Any change to medication is a decision for the prescriber. Arrangements differ across England, Scotland, Wales and Northern Ireland. Curalune does not allocate beds and does not guarantee availability.
