When the dementia seems to get worse overnight

Speed is the clue

Hours or days is the thing to notice. Dementia does not usually do hours or days.

Nor does it usually fluctuate wildly within one day, and nor does it usually bring new sleepiness, new unsteadiness, or hallucinations that were not there two weeks ago. Those are the shapes of something acute.

Some dementias, Lewy body especially, do fluctuate on their own, which makes this harder rather than impossible. Even there, caregivers describe knowing the difference between his usual bad afternoon and this, which is not that.

The word that changes the conversation

Delirium. It means a sudden change in someone’s thinking or alertness caused by something physical, and it is common, treatable, and routinely missed in people who already have a dementia diagnosis.

Missed for an understandable reason: a confused person with dementia looks like a person with dementia. The label is already on the chart and the new confusion gets filed under it.

Caregivers report that saying "this came on in two days, I think this is delirium, what could be causing it" gets a different response from saying "he seems more confused". It is the same information. One of them asks for a cause.

A urinary infection, which everybody suggests first

And they are right to, because it is the most common cause and it can produce dramatic confusion with none of the symptoms you would expect. No pain, no fever, no complaint of anything.

Worth knowing: it is often checked and ruled out, and then the search stops there. A negative urine test rules out one cause and not the other dozen.

Constipation, and the thing it can lead to

This is the one that does not get suggested and should.

Constipation alone can cause real confusion and agitation in an older person. Left long enough it can do more than that: a caregiver whose father was in and out of the emergency room for a month with worsening hallucinations and aggression eventually got full blood work done, and his ammonia was extremely high. No liver damage. A compacted colon and dehydration.

For a month the story had been the dementia getting worse, with conversations about what to do if he attacked somebody at the facility, and about increasing his medication.

High ammonia can look like early confusion, sleepiness, irritability and clumsiness, and at worse levels like slurred speech and seizures. All of which reads as dementia to anybody who is expecting dementia.

It is a blood test. If symptoms have jumped and nobody has checked, it is a reasonable thing to ask for by name.

Not drinking enough

Underneath a lot of the above. Thirst fades with age, and somebody who has stopped noticing they are thirsty will not ask, and somebody worried about getting to the bathroom in time may be avoiding it deliberately.

Caregivers describe having to make drinking a scheduled thing rather than an offered one, in small amounts, all day, in whatever form gets drunk. Soup, popsicles, watered juice, jelly. It does not have to be water and it does not have to be in a glass.

Medication, including the ones that have not changed

A new drug, a changed dose, or something added by a different doctor who did not see the whole list, are all obvious candidates and worth mentioning.

Less obvious: a drug he has taken for years can start causing trouble, because kidneys and livers process things differently at eighty than they did at seventy. And some very ordinary medicines, including ones bought without a prescription for sleep, allergies or bladder problems, have effects that stack up and hit thinking hardest in older people.

The ask is a medication review, with every box on the table including the ones from the supermarket. Not a decision made at home. Stopping something suddenly can be more dangerous than the something.

Pain that cannot be reported

Somebody who cannot say "my tooth hurts" may say it by pacing, shouting, refusing to be touched, or going quiet and still.

The usual suspects are teeth, a urinary infection again, constipation again, a pressure sore, an ingrown toenail, and a fracture nobody witnessed. Caregivers describe weeks of escalating agitation that turned out to be an abscess or a broken wrist.

Worth checking the whole body if a new agitation has no other explanation, and worth saying to a doctor that you suspect pain rather than asking for something to calm him down.

The rest of the list, briefly

Chest infections and pneumonia, which in an older person often present as confusion before they present as a cough.

Low sodium, which is common, often caused by medication, and shows up as confusion and unsteadiness.

An underactive thyroid, and low B12, both of which are blood tests and both of which are treatable.

Blood sugar in either direction, for anybody diabetic.

A fall, even one weeks ago and even one that seemed fine at the time, because bleeding on the brain can develop slowly and quietly.

And the unglamorous ones: a hearing aid with a dead battery, lost glasses, a new room, or three nights of no sleep. None of those need a doctor and all of them can look like a steep decline.

What to actually ask for

Caregivers who get somewhere describe walking in with the same few things.

When it started, and how fast. Write the date down. "Since Tuesday" does more work than "recently".

What is different, specifically. Sleepier, more agitated, unsteady, hallucinating, not eating.

The word delirium, said out loud.

And a request for blood work rather than a description of symptoms: a full panel including kidney function, sodium, liver and ammonia, plus a urine test, is the ask that several caregivers credit with finding the answer.

If you are told it is just the dementia and the change happened in days, it is reasonable to say that you understand that and would still like the tests, and to ask for the reason to be written down if they are declined.

Why it is worth the fuss

Because the alternative to finding a cause is usually medicating a behavior.

When a sudden decline gets read as the disease progressing, the next conversation is often about drugs to manage agitation, and those carry real risks for older people with dementia. Sometimes they are the right answer. They are a much worse answer when the actual problem was a colon and a lack of water.

A blood test first costs a morning.