Mike Belleville always considered himself a laid-back guy, but when he reached his late forties, he and his wife began noticing a change. "Suddenly I had a shorter fuse," says Belleville, now 59, who lives in Cumberland, RI. "I'd go from zero to 60 before I knew it." Initially, his doctors attributed the anger to depression. Then one night Belleville and his wife had a disagreement that inadvertently led to an aha moment. "The next morning, she told me the horrible things I'd said—things I'd never dream of saying and didn't remember saying," he recalls. "That's when we knew something more serious was going on."

After several tests—MRIs, PET scans, and a spinal tap, among others—Belleville was diagnosed with early-onset Alzheimer's disease.

Neither Belleville nor his wife could have imagined that within two years he would begin seeing things that weren't there. Sometimes he'd see a dog or a cat walking around the room. "It would startle me," he says. "We didn't have pets, so I wondered what was going on." Even more distressing were the fears that began to haunt him—that someone was hiding behind the shower curtain or under the bed. "Going to bed at night got very difficult, but I was embarrassed, at first, to tell anyone."

Belleville was experiencing dementia-related psychosis, a common symptom in people with dementia, whether due to Alzheimer's disease, Lewy body dementia, vascular dementia, or dementia related to Parkinson's disease. (Based on his psychosis symptoms, Belleville was later diagnosed with Lewy body dementia.) Dementia-related psychosis refers to behaviors that can include hallucinations, delusional thinking, agitation, or aggressive behavior, says David S. Knopman, MD, FAAN, professor of neurology at Mayo Clinic in Rochester, MN, who specializes in dementia. People may have visual, auditory, and even olfactory hallucinations—seeing, hearing, and smelling things that aren't there—or paranoid delusions, such as suspecting a caregiver of wanting to harm them.

While psychosis can be more common as dementia advances, visual hallucinations can be an earlier symptom of Lewy body dementia and Parkinson's-related dementia, says Jennifer G. Goldman, MD, FAAN, section chief for Parkinson's disease and movement disorders rehabilitation at the Shirley Ryan AbilityLab in Chicago. "Studies show that as people with Lewy body dementia and Parkinson's disease become more cognitively impaired, they may experience more psychosis."

A July 2020 survey involving 212 patients found that 61 percent experienced visual hallucinations weekly. Most participants in the study—which was sponsored by UsAgainstAlzheimer's, the Lewy Body Dementia Association, and Acadia Pharmaceuticals—were caregivers responding on behalf of patients. Of the 186 caregivers surveyed, 76 percent reported that their loved ones regularly experienced paranoid delusions, and 52 percent of the caregivers said their loved ones didn't trust them.

Patients and their families often feel alarmed or even blindsided by psychosis. The hallucinations or delusions make it difficult for patients to know what is real, which can increase their anxiety and affect their personal relationships. The survey also found that people with dementia are generally uncomfortable discussing the episodes, even as they affect their sleep, social life, independence, and safety.

Such episodes can also be a huge worry for family members. "Too often, family members get a diagnosis but no education about how to live with it," says Jason Karlawish, MD, co-director of the Penn Memory Center at the University of Pennsylvania School of Medicine and author of The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It, which will be published in February.

Jo Anne Jordan, 70, a retired medical assistant in Brunswick, MD, says that her husband, Ed, a former pastor with Lewy body dementia, began having psychosis symptoms three years ago. "One day he told me he saw a little boy hiding under the table; sometimes he'll hear people knocking at the bedroom door, or he'll smell something burning," she says. "He also has delusions that there are two of me, the mean Mrs. Jordan and the nice Mrs. Jordan. I tell him, 'I wish there were two of me—that would be helpful.'"

Hallucinations or delusions can be frightening to witness, but as long as they do not upset the patient, family members may not have to take action, says Dr. Karlawish. "It's crucial to interact with a loved one in a way that helps everyone stay calm. Otherwise, families get upset, patients get upset, and that just leads to a cycle of communal despair."

It's also important to report unusual symptoms or behavior to the patient's neurologist, who might start by suggesting the following simple actions and lifestyle changes.

Determine the Cause

Psychosis can be triggered by medication, an undiagnosed infection, a change in routine, or a new environment, says Lon S. Schneider, MD, MS, chair of psychiatry and neuroscience at the University of Southern California's Keck School of Medicine. "An undiagnosed urinary tract infection might make someone agitated or keep them up all night," he says. "Or the person may be in pain but unable to express it."

Assess Each Episode

"When someone tells me that hallucinations are happening, the first thing I ask is 'How disruptive are they to the caregiver or the patient?'" says Dr. Knopman. "If a person sees a puppy in the living room and it doesn't bother him or her, that hallucination may not need to be treated."

When Jo Anne Jordan hears her husband talking to someone in an empty room, for instance, she'll ask him whom he is talking to. "When he points to a pillow or a chair, I'll say, 'Oh, did it talk back?' and he'll laugh," she says.

Stay Calm

Maintaining a serene demeanor is always helpful when someone is experiencing dementia-related psychosis. "If I look out the window and the sky is purple, well, that's what I see," says Belleville. "If my wife argues or tries to prove she's right, I just get agitated." A better strategy: "She'll try to distract or redirect me by saying, 'What are the ingredients for dinner tonight?'" Belleville explains. "She's so good at it now, I don't always realize that she's doing it, but it helps calm me down."

Seek Stimulation

"When people tell me their loved ones are seeing or hearing things, I'll ask, 'What's their typical day like—is it safe, social, and engaged?' Usually people can say yes to the first one, but not to the others," says Dr. Karlawish. Before the pandemic, he often recommended enrolling the person in an adult activity program. "It's easy to just park someone in front of the TV," he says. But implementing a creative routine can help, whether it's taking walks together or doing something artistic.

Look for Openings

Sometimes a hallucination can be an opportunity for connection, says Dr. Karlawish. "If your spouse asks about his mother who has been dead for 20 years, instead of telling him that and possibly triggering grief, you might ask, 'If she were here, what would you talk about?'" he suggests.

Tweak the Environment

Make adjustments to avoid triggering hallucinations, says Dr. Knopman. If, for instance, your wife gets upset every time she looks in the mirror because she doesn't recognize herself, get rid of the mirrors. If your husband is agitated because he thinks someone has stolen his wallet, leave it where he can always see it. Improving the lighting is also worth a try: Put night lights in the halls and clean up cluttered spaces, says Dr. Goldman. "Patients are less likely to see shadows they can misinterpret."

Ask for Help

"It's important for caregivers to get support of their own through groups, counseling, or the patient's health care team," says Dr. Goldman. Jo Anne Jordan drops her husband off with their grown son or daughter when she needs time to herself; recently, she enrolled in an online caregivers' class at her local senior center. "I know I need to find resources to help me so I can stay healthy and sharp, because I'm the main caregiver," she says.

Be Wary About Medications

In people with Lewy body dementia or Parkinson's-related dementia, psychosis is often caused by dopamine-based medications used to treat motor symptoms like stiffness and gait problems. "Excess dopamine is associated with hallucinations and delusions; with Parkinson's, visual hallucinations are especially common," says Dr. Schneider.

The causes of psychosis in people with Alzheimer's disease aren't clear, which may be why it's been so difficult to find the right medications to treat it. Some are ineffective, while others come with warnings about an increased risk of death, says Dr. Knopman. And many antipsychotic drugs have side effects such as low blood pressure, sleepiness, impaired motor skills, and tremor.

Some so-called atypical, or second-generation, antipsychotics can be prescribed to ease symptoms that are scary or potentially dangerous to the patient or caregiver—like if someone is physically aggressive or hiding in a closet and shaking in fear because of delusions. "Antipsychotics like quetiapine (Seroquel) and olanzapine (Zyprexa) can be considered when you've run out of nondrug solutions," says Dr. Knopman. Medication should not be the first step, though, says Dr. Karlawish. "It's crucial to find out what else might be going on to cause the psychosis and to make sure that patients are engaged."

Belleville stays engaged with volunteer work. "I'm retired, but I've done advocacy work for the Alzheimer's Association for the past five years, testifying for legislation and helping to strengthen laws against elder abuse," he says. He also edits a podcast that addresses the stigma surrounding dementia. "And I've been cooking the main entree for dinner every night, with my wife's help," he says. "Just because you have dementia doesn't mean you can't learn new things."

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