A daughter called me last spring because her father had started talking to someone in the corner of the living room. The family had been managing fine until then. Hallucinations do that; they are the symptom that makes families feel the disease has crossed a line, and they are the one that most often brings someone to my office.
Hallucinations are most common in the middle to late stages of Alzheimer’s disease, and in Lewy body dementia they can show up early, sometimes before memory loss is obvious. Not everyone with dementia has them, and a new hallucination often has a cause other than the dementia itself, so the first call is to the doctor.
The short answer by stage
In Alzheimer’s disease, hallucinations usually appear in the middle stage, when confusion about time and place has set in, and they can continue into the late stage. In the early stage they are uncommon. In Lewy body dementia, detailed visual hallucinations of people or animals are a core feature and often appear early. In Parkinson’s disease dementia they are common and tied partly to medication. In vascular dementia they vary with where the damage sits.
Stage matters less than cause and response. A person in the middle stage who suddenly sees children in the hallway may have a bladder infection, not a new stage. The sections below cover what to rule out and what trained staff do when the hallucination is real. For the staging itself, my post on the seven stages of Alzheimer’s disease gives the full picture.
Hallucination, delusion or misperception
Families use the word hallucination for three different things, and staff treat them differently.
| What it is | Example | Usual response |
|---|---|---|
| Hallucination: sensing something that is not there | Seeing a child on the bed, hearing voices, smelling smoke | Check health causes, reassure, redirect, adjust the room |
| Delusion: a fixed false belief | The aide is stealing my money; my husband is alive and late for dinner | Do not argue, respond to the feeling, address the fear |
| Misperception: a real thing seen wrongly | A coat on a hook becomes a man, a dark rug becomes a hole, a mirror becomes a stranger | Fix the environment: lighting, covers, remove the trigger |
Misperceptions are the easiest to fix and the most common cause of the hallucinations I hear about. A bathroom with a black floor mat, a television left on in the next room or a mirror facing the bed accounts for a surprising number of frightening evenings.
When they appear in different dementias
The type of dementia shapes both the timing and the content.
Alzheimer’s disease
Visual hallucinations in the middle to late stages, often of people, sometimes of a parent or a child. Delusions about theft or infidelity are more common than true hallucinations.
Lewy body dementia
Vivid, detailed visual hallucinations early in the disease, often of small people or animals, sometimes without distress. Alertness fluctuates from hour to hour. Certain antipsychotic medications can cause severe reactions in this condition, so the diagnosis matters and the doctor needs to know.
Parkinson’s disease dementia
Similar to Lewy body, and often linked to the medications that treat movement symptoms; the doctor may adjust doses.
Vascular and frontotemporal dementia
Less predictable. Hallucinations are less common in frontotemporal dementia, where behavior and language change first.
Other causes to rule out first
A new or sudden hallucination in a person with dementia is a medical question before it is a care question. Urinary tract infections, dehydration, new medications or doses, poor vision from cataracts, hearing loss, constipation, pain, poor sleep and delirium after a hospital stay all cause hallucinations and all can be treated. Talk to the doctor the same week, bring a list of medications, and ask for a urine test.
I say this on every call because families often assume the disease has simply moved on. In my experience with the families I follow, a good share of first time hallucinations trace back to something fixable, and the person comes most of the way back once it is treated.
How memory care staff respond
Trained staff do four things, in order, and they do them calmly.
Stay with the person
No arguing, no insisting that nobody is there. The hallucination is real to the resident, and contradiction raises fear. Staff respond to the emotion: that sounds frightening, and I am here with you.
Check the body and the room
Temperature, hydration, pain, toileting, glasses and hearing aids, then lights on, blinds closed against reflections, television off, mirrors covered if needed.
Redirect
A walk down the hall, a snack, a familiar song, a task like folding towels. I described the method in redirection in memory care, and good aides do it without the resident noticing.
Document and report
Every episode is logged with the time, what the resident saw and what helped. The nurse looks for patterns, which usually point to late afternoon, when sundowning in dementia also peaks, and reports to the doctor and the family. Medication is a last resort, decided by the doctor, not by the community.
This is what you are paying for in memory care, and it is what I watch for on tours. My page on memory care explains how I check staffing and training in each building.
What families can do at home
You can use the same approach the staff use, with a few changes for a private house.
- Keep the lighting even in the late afternoon and evening, with no dark corners and no flickering screens.
- Cover or remove mirrors in the bedroom and bathroom if they cause distress.
- Check glasses and hearing aids daily, and keep the prescriptions current.
- Respond to the feeling, not the content; reassure, then change the activity.
- Keep a log of time, trigger and what helped, and bring it to the doctor.
- Call the doctor the day a hallucination is new, sudden or frightening.
- Never leave the person alone with the hallucination if they are afraid or trying to leave.
Step seven is the hardest one for a caregiver who also has a job, children and a body that needs sleep. It is usually the step that tells a family the house is no longer enough.
When hallucinations mean it is time for memory care
Hallucinations alone are not the trigger. Hallucinations that lead to leaving the house at night, refusing care, striking out at a spouse, or a caregiver who has not slept in a week are. At that point the question is no longer whether the disease is worse but whether one tired person at home can respond the way a trained team does, every evening, for years.
Across Long Island and Queens there are about 47 memory care programs, 42 inside larger assisted living communities and 5 free standing, and the ones I recommend are the ones where I have watched staff handle an episode well at 4 p.m. on a Tuesday. My post on when to seek memory care covers the rest of the signs.
Talk to me before the next bad night
Assisted Living Locators of Long Island helps families across Nassau, Suffolk and Queens find memory care that handles behaviors with skill, and the help is free to families; communities compensate the advisor when a family moves in. I hold a dementia care certification, I tour with you and I follow up after the move.
My office is at 42 Prospect Ave, Glen Cove, NY 11542. Call me before the next bad night.
Questions readers ask
Are hallucinations in dementia always frightening for the person?
No. Some people, especially with Lewy body dementia, see people or animals calmly and are not distressed. Staff respond to the person’s emotion, not to the content, and only step in when the person is afraid or unsafe.
Should I tell my mother that what she sees is not real?
Usually not. Contradiction raises fear and rarely convinces. Acknowledge the feeling, reassure her that she is safe, and move to another activity or room.
Can medication stop hallucinations in dementia?
Sometimes, but the doctor weighs real risks, and some drugs are dangerous in Lewy body dementia. Treating infections, adjusting other medications and changing the environment come first.
Do hallucinations mean my father is in the last stage?
Not necessarily. They most often start in the middle stage, which can last years, and a sudden new episode is often caused by an infection or medication rather than progression.
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