She Sees or Hears People Who Aren't There, Dementia Situation Navigator

What May Be Happening

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A medical question first

A new hallucination is a medical question before it is a dementia question, since infections, fevers, new medicines, and eye disease can all put people and animals in the room. Rule those out with her doctor before anyone reads the visions as the disease progressing.

What she is actually experiencing

Misperception. Start with what she is actually experiencing, because much of what families describe as hallucination is misperception: a coat on a hook read as an intruder, her own reflection read as a stranger in the house, people on television treated as guests, a pattern in the curtains becoming a face. A damaged visual system doing its best with dim light produces exactly these errors, and a brighter lamp, a covered mirror, or a quiet television fixes what no pill can.
A true hallucination. A true hallucination arrives without raw material, and to her it is not "like" seeing someone. She is seeing someone. Her brain is delivering the image with the same stamp of reality it puts on your face, which is why arguing about what is really there asks her to trust your eyes over her own, and she cannot.

Before Anyone Starts an Antipsychotic

Visual hallucinations that arrive early in a dementia raise a specific question: could this be Lewy body dementia? It matters because many people with Lewy body dementia who are given antipsychotic medications have severe reactions, some of them fatal, and the reactions are not dose-related, so a small dose is not a safe dose. All antipsychotics carry an FDA warning of increased death rates in older people with dementia, and the older ones such as Haldol are the most dangerous in Lewy body disease. So before the first pill, ask the doctor directly: could this be Lewy body dementia, and is this drug safe if it is? If she has suspected or diagnosed Lewy body disease, get the Lewy Body Dementia Association's medical alert wallet card, which carries the current list of medicines to avoid, and in any emergency room say the words "no Haldol." And hold onto this: if her visitors do not frighten her, medication may not be needed at all. The drugs exist to treat her distress, not the family's discomfort.

What to Say

Reach

"That sounds frightening. You're safe, and I'm right here with you."

You are answering the fear, which is real, instead of the man, who is not, and the fear is the only part of the experience you can actually reach.

"I don't see him, but I believe that you do. Come help me in the kitchen."

This is honest without arguing, and it moves her toward a brighter room and a task, which changes what her eyes and her attention are working with.

"Tell me about them."

When the visitors are calm, curiosity serves you better than correction, since what she describes, and when, and in what light, is exactly what her doctor will need.

"I'll check the house so you can rest."

Checking costs you two minutes and answers the feeling of danger; you are securing her sense of safety, not agreeing there is an intruder.

What Not to Say

"There's nobody there. Look, see for yourself."

She did look, and she saw him, so the demonstration proves to her only that you cannot be trusted about the man, and she needs you to be trustworthy more than she needs to be right.

"You're imagining things again."

"Imagining" tells her the failure is hers and "again" tells her it is chronic, and shame does not make hallucinations stop, it makes her stop reporting them.

"She's seeing things again," said to someone else in front of her.

She hears more than you think and reads tone long after words go, and being discussed as a problem in her own living room teaches her the people whispering are not on her side.

What to Try Next

RChange Your ApproachReach

Raise the light. Bright, even lamps at dusk, no single bulb throwing shadows, curtains closed before the window turns into a mirror, and the television off during her vulnerable hours, since half-heard voices from another room populate a house.
Cover or move a mirror that has become a stranger. If the hallucinations cluster at dusk, work through the sundowning guide alongside this one.
If Lewy body dementia is suspected or diagnosed, order the LBDA medical alert wallet card at lbda.org, put "no Haldol" in her chart and your phone, and bring both to every emergency visit.

Track the Pattern

Log each episode: what she saw, the time, the room, the lighting, and how afraid she was, dated.
Check the log against the last two weeks of changes, since a new medicine, an illness, or a vision change that lines up with the start is the lead her doctor will want first.
Track whether the visitors frighten her, because that answer, more than their frequency, decides whether medication should even be on the table.

Print the one-page log if you want somewhere to keep this, and take it to the appointment.

Stay Steady

Your job in the moment is her safety and her calm, not her accuracy. You do not have to make her see your living room.
If her visitors do not frighten her, they do not have to frighten you. You are allowed to let a harmless guest sit in the chair while the two of you get on with the evening.

When to Call a Clinician

This is what the tracking is for. What she sees, when, and in what light is what turns a frightening evening into something her doctor can act on.

Seek Care Now

The hallucinations started suddenly, over hours or a few days, or they come with fever, a cough, pain, or any sign she is ill. Sudden hallucinations often mean delirium, a medical emergency caused by infection, medication, or illness, and not a new stage of the dementia. If she is also newly confused or her alertness comes and goes, treat it as delirium until a doctor says otherwise.
The voices or visions are telling her to do something dangerous, or she is trying to flee the house or defend herself against what she sees. Do not grab her or block her path, because a cornered and terrified person will fight the person cornering her. Move anything dangerous out of her reach, stay where she can see you, speak low and slow, and call now.
She has hurt herself reacting to something that is not there, even slightly.

Call Today, Non-Urgent

This is her first hallucination, even a calm one, since the doctor needs to rule out causes and review every medication she takes before anyone blames the dementia.
Familiar hallucinations are becoming more frequent, or fear is newly attached to visitors that used to be neutral.
She has serious vision loss and is seeing detailed, silent scenes. Ask about an eye exam, since damaged eyes can generate vivid images on their own.
A doctor has proposed an antipsychotic. Before the first pill, ask the question in the section above.

Before the appointment, write down what she sees, when, in what light, and how afraid she is, because the pattern carries more diagnostic weight than any single episode, and she may describe none of it in the office.

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