She Sees or Hears People Who Aren't There

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.

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 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.

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.

1. 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.
2. Cover or move a mirror that has become a stranger. If the hallucinations cluster at dusk, work through the sundowning guide alongside this one.
3. 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.

1. Log each episode: what she saw, the time, the room, the lighting, and how afraid she was, dated.
2. 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.
3. 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.

1. 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.
2. 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.

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.