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 meeting someone says the sentence that ends the discussion: «the disease 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 at all. All of it gets charted as «behaviours of concern».
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.
The Australian lever: that sedative is a restrictive practice
This is the part most families do not know, and it changes the conversation immediately. In Australian aged care, medication used to influence a resident's behaviour is a restrictive practice — chemical restraint — and it is tightly regulated. It is not something a provider can simply start because a shift was difficult.
The conditions attached to it are, in substance:
- It must be a last resort, used only after alternatives have been tried — and those alternatives must be documented. Looking for a cause, pain included, is precisely one of those alternatives.
- It requires informed consent, given by the resident or by the person authorised to decide for her — the restrictive practices substitute decision-maker. If nobody asked you, that is a question worth asking out loud.
- It must be recorded in a behaviour support plan, with the behaviour described, the alternatives tried, and a plan to review and reduce the practice — not continue it indefinitely.
- Restrictive practices are monitored by the Aged Care Quality and Safety Commission, and misuse is exactly what it is there for.
So the question is not «could you please not sedate her?» It is:
«What alternatives were tried and documented before this medication, and who consented to it?»
That question does not accuse anybody. It asks about a process that either exists in writing or does not.
The second question, and the one that finds the cause
«Which pain assessment tool have you used, when, and what was the score?»
Weight, blood pressure and falls all get recorded. Pain belongs in the same place. The possible answers tell you everything: a tool and a score means the home is doing its job; «she doesn't look like she's in pain» means nobody assessed; «she can't tell us, so it can't be assessed» is answered in the next paragraph — and it is the most important part of this article.
«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. 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 built for exactly this: the Abbey Pain Scale, developed in Australia and used widely in aged care homes here, and PAINAD. They score facial expression, vocalisation, body language, physiological change and behaviour. No test and no cooperation required — only 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.
Why pain gets missed so often
- 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, and dental access in residential care is one of the widest gaps there is.
- Pressure injuries 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 «PRN» trap
Look at the medication chart and find the letters that decide everything: many analgesics are charted PRN — as needed. For an alert resident that is sensible; she asks when she needs it.
For someone who cannot ask, «as needed» means never in practice. The medicine exists on the chart, never reaches the person, and the paperwork looks correct.
Which gives you a concrete proposal:
«Can we try regular scheduled pain relief for a week and see whether the behaviour changes?»
This is the analgesic trial: simple pain relief at fixed times — not as needed — for a defined period, and then you watch. If the agitation eases, you have your answer and you have avoided a restrictive practice altogether. If nothing changes, you have ruled out pain with real information instead of an impression. And in the language of the rules, this is exactly the kind of alternative that must be tried and documented first.
You can also ask for a medication review by a pharmacist, which the resident's GP can arrange.
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 of day. If it comes at the same hour every day, it is not a mood. It is an event.
Put it in writing
What you win in conversation is gone at the next handover. Ask for it in the care and services 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 case conference you simply ask whether it happened.
If nothing changes
In order: the GP and the care manager, then in writing — an email is enough, it creates a date — then the provider's complaints process, then the Aged Care Quality and Safety Commission, which takes complaints from families directly and oversees restrictive practices. OPAN provides free independent advocacy and will help you frame the request. You can also ask for a palliative care referral: palliative care is not only for the last days of life, and long-missed pain is 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.
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 A$109 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 your request here
The short version
- Someone who cannot say «it hurts» shows it as behaviour — and that behaviour often gets a psychiatric drug.
- In Australia that medication is a restrictive practice: last resort, alternatives tried and documented, informed consent, behaviour support plan, and review.
- Ask what alternatives were documented and who consented.
- «Not assessable» is false: the Abbey Pain Scale was developed here for exactly this.
- Watch for analgesics charted PRN: for someone who cannot ask, that means never.
- A scheduled analgesic trial is itself one of the alternatives that must be tried first. Visit during personal care; OPAN advocacy is free.
This article is general information and does not replace medical or legal advice on an individual case. Any change to medication is a decision for the treating doctor, and whether a practice is restrictive depends on the specific circumstances. Curalune does not allocate beds and does not guarantee availability.