As many as one in three people with Alzheimer’s disease experience hallucinations: They see, hear, smell or otherwise sense things that aren’t actually there.

In a recent 2022 study published in ,The American Journal of Geriatric Psychiatry, looked across Medicare claims for adults with dementia, finding that, while hallucinations and other neuropsychiatric symptoms are common in Alzheimer’s and other forms of dementia, they are going unnoticed by clinicians. An Alzheimer’s diagnosis can be isolating — and it can come with stigma. Experts say hallucinations going unnoticed could mean people in early stages of Alzheimer’s must face not only these disorienting symptoms, but further stigmatization and isolation.

One factor standing in the way of clinicians’ ability to diagnose and treat symptoms like hallucinations is that, according to neurologist Dr. Erin Foff, many patients have trouble talking about these symptoms. “One of the difficult things is that these are tough symptoms to talk about, and they don’t often get discussed in a clinical setting,” Foff, who is the Chief Medical Officer for MapLight Therapeutics, said in an interview in 2021.

Meanwhile, once a clinician knows about these symptoms, Foff said, it’s easier for them to help patients and their caregivers safely intervene when the hallucinations are causing harm.

Are hallucinations: a red flag for cognitive decline

There are a number of neuropsychiatric symptoms common in people living with early Alzheimer’s, including agitation, depression, anxiety, and sleep disturbances. While studies show that all of these experiences are linked with Alzheimer’s, hallucinations, in particular, bear a stronger relationship to Alzheimer’s disease progression.

“We know that patients with hallucinations and delusions, even when they’re not severe, have a faster decline in cognition,” Foff explained. “They actually have higher morbidity and mortality all around.”

Because of this stronger association, identifying and speaking with an expert about hallucinations early on may help give families and doctors time to take preventative measures that will help ensure a patient’s safety. While specific medications aren’t available on the market yet, spotting hallucinations early could encourage family members to increase safety and accessibility at home.

How do hallucinations impact the quality of life?

Hallucinations impact a person’s quality of life and affect their health — and they may differ from person to person, and even from event to event.

Severe hallucinations are easier to spot — seeing a loved one speak to a person that isn’t there for example. These visual deceptions can be disorienting or upsetting — and they may even in some cases lead to self-harm. Other hallucinations, while mild, are still cause for concern, Foff said.

“If someone believes that their food is tainted, they may not eat as much, or at all,” she said. “That might just seem like a missed meal, because the family member doesn’t realize that the reason the person is not eating is they believe something’s wrong with their food.”

Are hallucinations treatable?

Treating this symptom in Alzheimer’s disease is still a challenge: Antipsychotics are often prescribed to treat these symptoms, but there are currently no antipsychotic medications that are FDA approved specifically for people living with Alzheimer’s and some other forms of dementia. Further, these prescriptions are shown to only have a small positive effect on symptoms, while they come with a high risk of side effects, ranging from sedation, to falls, to faster rates of cognitive decline.

Scientists and drug developers are hard at work on safer alternatives to help patients and their families. While the drug pimavanserin was recently approved for treating hallucinations in Parkinson’s Lewy body dementia, the FDA declined to approve it for patients with Alzheimer’s.

While hallucinations can be challenging for the family members and care providers of patients to spot, they are linked to the presence of dementias like Alzheimer’s and other dementias and to faster cognitive decline for people living with an Alzheimer’s diagnosis. While there are no drugs on the market specifically for Alzheimer’s hallucinations, identifying this symptom in its early stages can mean more time to plan and start other preventative lifestyle interventions.

To learn about clinical trials of new medications that aim to modify the pathology of Alzheimer’s disease, call Charter Research at 407-337-1000 (Orlando) or 352-775-1000 (The Villages).