He's in the Hospital and Getting Worse, Dementia Situation Navigator

What May Be Happening

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Delirium, before dementia

Before anything else: a person with dementia who becomes newly confused in hospital is often in delirium, which is a medical change layered on top of the dementia rather than the dementia moving faster. Pain, an infection, dehydration, constipation, a bladder that will not empty, a new medicine, and glasses or hearing aids left in a drawer at home are the ordinary causes, and most of them are treatable once someone hears that this is new.

What is usually underneath it

Delirium is missed. Delirium is common on a hospital ward and it is missed constantly, because new confusion in someone who already has dementia looks like more of the same to anyone who did not know him last week. It fluctuates, so he can be nearly himself at ten in the morning and unreachable by four. Attention goes first, so he loses the thread mid-sentence and cannot hold a question long enough to answer it. And it runs in two directions. The agitated version, pulling at lines and trying to climb out of bed, gets noticed. The quiet version, where he goes drowsy, withdrawn and hard to rouse, gets charted as resting comfortably, and it carries the same risk.
The building. The building does its share. Lights that never go off, alarms, strangers every few hours, no window to read the time of day from, an IV line and a monitor that pin him to the bed, meals in sealed packaging he cannot open. Take away movement, sleep, food, water, glasses and hearing aids at once and a brain that was managing at home has nothing left to manage with. When he pulls at a line or tries to get up, that is usually a body trying to get comfortable or find a bathroom. It gets read as behavior, which is how a sedative or a restraint arrives, and both deepen the delirium they were meant to control.
Nobody knows his baseline. And nobody on the ward knows his baseline. They know his chart. A man who followed a conversation on Tuesday and cannot follow one on Thursday looks, to a nurse meeting him on Thursday, like a man with dementia. You are the only person in the building who can say that Thursday is not normal. Being there and saying it plainly is not a courtesy. It is the instrument the ward does not have.

What to Say

Reach

"I'm right here. You don't have to figure anything out."

Attention is the first thing delirium takes, and every question and explanation asks for exactly what he cannot do right now. Taking the figuring-out off him is the reassurance that lands.

"You're in the hospital because your body needed some help. I'm staying."

Say where he is once, plainly, and pair it with the thing he is actually afraid of, which is being left. Do not test whether it stuck.

"Let's sit up straight and take a small sip."

Sitting fully upright matters more than usual here, since a drowsy person is at real risk of a drink going down the wrong way, and the tray the ward left at the foot of the bed is not going to do this for him.

What to Say to the Staff

"This is not his baseline. On Tuesday he could follow a conversation, and today he can't hold a sentence."

Baseline is the word that moves a ward, and two fixed points with the time between them tell a nurse more than any adjective. Say it to each new shift, since the chart may not.

"Has anything been added or stopped since he came in?"

A sleep aid, an antihistamine, a painkiller, or a home medicine that quietly did not get reordered are among the most common triggers, and the easiest to reverse once someone looks.

"Does he have his glasses and hearing aids in, and when did he last eat, drink and pass urine?"

Five ordinary things that are nobody's job in particular on a busy ward, and any one of them can be the whole explanation.

"I'd like it noted in the chart that I reported a change from his baseline today."

A report that is written down changes what the ward does next, and it is the sentence to use when the answer to everything else has been "he has dementia." If it still is, ask for the charge nurse and say it again.

What Not to Say

"Do you know where you are? Do you know what day it is?"

Quizzing someone whose attention is impaired produces failure and distress, and tells you something you already know.

"He's just confused, he has dementia."

Understandable, and it is the sentence that most often lets a treatable delirium run for a week, because it tells the staff there is nothing new to look for.

"If you don't calm down they're going to tie you down."

A threat he cannot act on, from the one voice he trusts, and it makes the fear that is driving the behavior worse.

What to Try Next

You cannot treat the infection or rewrite the medication list, and you can change most of what the room is doing to him.

RChange the RoomReach

Bring the anchors. Glasses, hearing aids and dentures in, and checked every visit. A clock he can read, a photo, a blanket that smells like home, and a card in large letters on the tray table: "You are at County Hospital. Ann is coming back at 4." Ask for the blind open by day and the lights down at night, since a body with no day and night cue does not sleep, and a brain that does not sleep does not clear.
Be the schedule. If you can choose your hours, be there at meals and in the late afternoon and evening, which is when the confusion peaks and the ward is thinnest. Sit him up, open the packaging, and offer sips through the visit. Ask whether the hospital has a family presence policy, a volunteer program for confused patients, or a way for one of you to stay overnight, and ask early, not on the third night.
Ask about everything that tethers him. When can the IV line, the monitor leads and the catheter come out. Can he walk in the corridor today with help, and who is going to help. If he is pulling at a line, ask for a sleeve or a hidden line before anyone suggests a restraint, and ask whether the new sleep or agitation medicine is necessary, since those are often the cause of the thing they were given for.
Plan for discharge before it is announced. "Worse than he came in" at discharge is common, and recovery from delirium runs days to weeks, not overnight. Ask for delirium to be named on the discharge summary so his own doctor knows to look for it, and line up more help than usual for the first two weeks at home, because this is when a second admission happens.

Track the Pattern

Write down the hour he is clearest and the hour he is worst, what he ate and drank, when he last passed urine, and how he slept, dated. The ward records vital signs; nobody records that he was himself at ten and gone by four, and that pattern is what makes delirium visible to the next doctor who rounds. If a new medicine was added, note the day, since the confusion that follows it is the most reversible kind.

Print the emergency room handoff and the one-page log: the handoff for the front desk, the log for the ward.

When to Call a Clinician

This is what the tracking is for. On a ward the clinician is the nurse at the bedside, and the hour it started and the hour it changed are what turn "he seems worse" into a page to the doctor.

Seek Care Now

He is newly drowsy and hard to rouse, or the change came on over an hour rather than a day. Use the call button and say "this is new" rather than waiting for rounds.
New weakness on one side, a drooping face, or slurred speech. Say the word stroke out loud to the first person you reach.
He coughs or chokes on drinks, or has not passed urine since morning, or is straining and in pain trying to.
He has fallen, or is climbing out of bed, or has pulled a line out.

Raise It at Rounds Today

He is more confused than when he was admitted and nobody has said the word delirium. Ask for the charge nurse or the doctor, and say the baseline first.
A medicine for sleep or agitation has been added since admission, or a home medicine has been stopped, and nobody has explained why.
He has eaten or drunk almost nothing for a day, or the catheter and lines are still in with no reason given.
Discharge is planned while he is still below his baseline, and there is no plan for who is with him at home.

Say the baseline first, then the change, then the hour it started, and hand over the log if you kept one. It is the one thing the ward has no way to know. If you want to talk it through with someone first, the Alzheimer's Association runs a free 24/7 helpline at 1-800-272-3900.

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