The sentence not to accept
You visit and she does not know where she is. Or she is drowsy and will not properly wake, or says things that do not hang together, or sees people who are not there. You ask what happened and you are told: "the dementia is progressing."
Most of the time that is not true, and it is the single most damaging sentence said in long-term care. Because if this is delirium — and very often it is — it is not a decline to accept. It is a medical emergency with a cause that can usually be found and treated.
How to tell the difference, in one line
- Dementia arrives over months and years and worsens slowly and fairly steadily from one day to the next.
- Delirium arrives over hours or days. And it fluctuates. Nearly herself at eleven in the morning, gone by four in the afternoon, worse again in the evening. That swing within a single day does not belong to dementia.
If something changed within days, and changes again across the day, the question is not "how much worse has she gotten" but "what happened to her?"
Two things that should happen automatically
Here is what gives you leverage in a Canadian home, and neither is a favour to ask for.
You should have been told. Provincial long-term care legislation requires the home to notify the resident's substitute decision-maker of a significant change in condition. A resident who was oriented last week and is now confused or unrousable is the textbook case. So: when was the physician or nurse practitioner contacted, and when was I notified? If you found out by visiting, that is a separate problem from the delirium, and it belongs in writing.
A reassessment should follow. Every home works on a standardised assessment cycle, and a significant change in status is supposed to trigger a full reassessment rather than waiting for the next quarterly one. Ask whether that has been done. It is a specific, checkable request, and it puts the change on the record where the care plan can follow it.
The quiet form that gets missed
Delirium is associated with higher mortality, longer hospital stays and a loss of function that is often not fully regained. And one form is missed far more than the other: hypoactive delirium — not the agitated resident who calls out, but the quiet one, drowsy in a chair, no longer joining in. She troubles nobody, and that is exactly why she can go a week unnoticed. "She's just tired" is the phrase never to take on trust.
The causes, nearly all treatable
- Infection, urinary or respiratory, often without fever — in older adults fever can be absent entirely.
- Constipation, up to fecal impaction. "When did she last have a bowel movement?" should always be asked, and "I'm not sure" is itself a finding.
- Urinary retention — a bladder that is not emptying. A bedside bladder scan settles it in two minutes.
- Dehydration, particularly after a heat event or a bout of vomiting or diarrhea.
- Untreated pain, which in someone who can no longer say so presents as confusion or agitation.
- Medications. Something started in the past two weeks — or stopped abruptly. The easiest cause to correct and the least often looked for.
- Lab abnormalities: low sodium, blood sugar, low oxygen.
What to ask for today
Not tomorrow, not at the next care conference. Ask for a same-day assessment by the physician or nurse practitioner, and ask that it cover these by name:
- When she changed, and whether she fluctuates. Get the last seventy-two hours described.
- When she last had a bowel movement.
- Whether her bladder is emptying — a bladder scan.
- How much she has been drinking, from the record rather than from memory.
- What changed in her medications in the past two weeks, including anything discontinued.
- Whether she is in pain, assessed with an observational tool if she cannot say.
One thing worth knowing, because it causes real harm: in older women, bacteria in the urine are extremely common with no infection present. A positive urine dip alone is not enough to conclude that a urinary infection is the explanation, and it is not a reason to stop looking for the other causes — nor, on its own, a reason for antibiotics.
What not to accept
The commonest wrong answer is to give her something to settle her. Sedation does not treat the cause, it raises the risk of falling, and it can deepen and prolong the delirium. If the first suggestion is medication for agitation and nobody has yet asked about her bowels, the order of business is wrong and you may say so.
What genuinely helps, and can be asked for immediately: her glasses and hearing aid actually on — being able to see and hear reduces confusion — daylight during the day and darkness at night, a familiar face nearby, a clock and calendar in view, and getting her up and moving as soon as it is safe rather than leaving her in bed.
When to call 911
If the confusion comes with a high fever, difficulty breathing, chest pain, repeated vomiting, an inability to rouse her, or sudden stroke signs — facial droop, arm weakness, slurred speech — do not wait for a visit. Call 911.
If nothing moves
Put it in writing to the director of care, in one sentence: "I am requesting a same-day assessment for acute confusion that began on [date], to rule out infection, constipation, urinary retention and medication causes, and I am asking when I was notified of the change." That sentence changes the pace, because it names an obligation rather than a preference.
Beyond that, the home's family council is a real lever, and every province runs a complaints and inspection line for long-term care — failure to notify a substitute decision-maker of a significant change is exactly the sort of thing an inspection looks at.
Where to start
If you are reading this because it happened yesterday, do one thing now: ask when she last had a bowel movement, and what changed in her medications in the past two weeks. Two questions, both answerable from the chart — and in a far from small share of cases, the answer is right there.
If you are looking for a home and want to know how they handle this when it happens, we can do that work. For CA$99 we take down your mother's situation, look for the homes in your area that answer these questions properly, and report back what they told us, with names and dates. Start here
This article is for information and does not replace a medical assessment. Acute confusion always needs to be assessed by a clinician: do not change or stop any medication yourself. Notification and assessment requirements are set provincially. If there are red flag signs, call 911. Curalune does not allocate beds and does not guarantee availability.