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 care conference 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. All of it gets charted as «responsive behaviours».
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 Canadian lever: pain is already a number in her file
This is the part most families do not know, and it changes the conversation immediately. Every resident in a Canadian long-term care home is assessed with interRAI, the standardized instrument the provinces use. It is not optional and it is not occasional — it is repeated on a schedule and after any significant change.
interRAI contains a pain scale. So pain is not an impression somebody forms about your mother: it is an item that has already been coded, with a date on it, sitting in her assessment. Which gives you the one sentence worth taking from this article:
«What does her most recent interRAI assessment show for pain, and when was it done?»
Not opinion against opinion — a document. The possible answers tell you everything. A score and a date means the home is doing its job. «She doesn't seem to be in pain» means nobody looked at the instrument. «She can't tell us, so it can't be assessed» is answered below, and it is the most important part of this article.
There is a second thing behind you. CIHI publishes long-term care indicators home by home, drawn from those same interRAI assessments — including how many residents report or show daily pain, and how many are on antipsychotics without a diagnosis that warrants one. You can look up this home before you argue, and after. The gap between homes on those two numbers is not explained by how sick the residents are.
«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 built for exactly this — PAINAD and the Abbey Pain Scale are both widely used in Canadian homes. They score breathing, vocalization, facial expression, body language and consolability. 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 care is the widest gap in Canadian long-term care, because in most provinces it is not covered the way medical care 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 an analgesic.
The «PRN» trap
Look at the medication record and find the letters that decide everything: many analgesics are ordered 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 drug exists on the order, never reaches the body, and the chart looks correct. It is one of the most common and least visible failures in long-term care.
Which gives you the second question — and a concrete proposal:
«Can we try a scheduled analgesic for a week and see whether the behaviour changes?»
This is the analgesic trial: a simple pain reliever on a fixed schedule — not as needed — 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 physician can evaluate. You can also ask when the pharmacist last did a medication review: most provinces require one at defined intervals.
What you can see yourself, with no clinical training
- Visit once during personal care or a lift 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 exactly what PAINAD scores.
- 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 — at getting up, at changing, before a dressing change — it is not a mood. It is an event.
Put it in writing
What you win in conversation is gone at the next shift change. Ask for it in the plan of care, 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 care conference you simply ask whether it happened. And you can request a care conference; families often wait to be invited.
If nothing changes
In order: the attending physician and the director of care, then in writing — an email is enough, it creates a date — then the home's Family Council and Residents' Council, which in Ontario and several other provinces have standing under the legislation and must be responded to, then your province's long-term care complaints or inspection line, and the patient ombudsman or seniors advocate where your province has one. You can also ask for a palliative care consult: 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 organization that has not looked in this direction because nobody asked it to. Asking what the assessment shows accuses no one — it asks for a number that has already been recorded.
When the home is the wrong home
Sometimes the answer is not «ask again» but «different home». A home where pain is assessed and acted on is a different product from one where agitation is switched off with a tablet. Both exist, often in the same city — and in most provinces at the same provincially set rate, so the better one does not necessarily cost you more.
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 CA$99 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 — and that behaviour often gets a psychiatric drug.
- Pain is already scored in her interRAI assessment. Ask what it shows and when it was done.
- CIHI publishes daily-pain and antipsychotic indicators home by home — look this home up.
- «Not assessable» is false: observational tools such as PAINAD exist for exactly this.
- Watch for analgesics ordered PRN: for someone who cannot ask, that means never.
- Propose a scheduled analgesic trial for one week, 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 treating physician, and assessment schedules, public reporting and complaint routes are set provincially. Curalune does not allocate beds and does not guarantee availability.