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When you or a loved one with Parkinson’s disease has hallucinations, it can be confusing and distressing. Hallucinations happen in 30 percent to 50 percent of people with Parkinson’s, and they are the most common form of Parkinson’s disease psychosis (PDP). The percentage of people who have hallucinations is higher in more advanced stages of the disease.
Hallucinations are perceptions of things that aren’t real. They can happen in different forms. Sometimes, minor hallucinations don’t interfere much with daily life, but in some cases, they impact quality of life for both people with the condition and their caregivers.
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“All week, I’ve had a rough time with hallucinations. They are coming more frequently than before, and staying longer,” a MyParkinsonsTeam member shared. “Sometimes, it’s very difficult to get through these hallucinations.”
If you or your loved one have been seeing objects that aren’t really there, find out what might be the cause and what you can do to manage it.
Hallucinations are one type of Parkinson’s disease psychosis, which can also include severe confusion, delusions (believing things that are not true), or delirium (temporary, sudden confusion that is sometimes related to medication).
Visual hallucinations are the most common type of hallucination. In visual hallucinations, people see objects, animals, or people that aren’t there.
Other types of hallucinations include:
Hallucinations are believed to be caused by changes in the brain that happen as Parkinson’s progresses. They can also be side effects of medications. For example, Levodopa/Carbidopa — which regulates dopamine levels in the brain to help control motor symptoms in Parkinson’s — can cause hallucinations as a side effect.
Hallucinations with Parkinson’s can vary from one person to the next. Recognizing hallucinations can help ensure that you or your loved one with Parkinson’s gets appropriate treatment. This may include adjusting or changing Parkinson’s medications.
A common type of visual hallucination that people with Parkinson’s experience are shadows or images that appear in the peripheral vision, or the corner of the eye. Many MyParkinsonsTeam members have shared their experiences.
“I see the silhouette of birds or moths occasionally out of the corner of my eyes. I have had this since prior to diagnosis. I know it isn’t real and have discussed this with my neurologist,” a member wrote.
Another member said, “I see out of the corner of my eye a little boy sitting in the grass and a woman in a blue dress dancing down the hallway. That’s when I started new meds.”
“I have some hallucinations, which are small black shadows that I see in my peripheral vision. They make me jump when they happen,” someone else shared.
MyParkinsonsTeam members often discuss having hallucinations of people and animals, which may be seen more clearly than hallucinations in the corner of the eye.
One member shared some observations about their husband, “He continues to have problems with hallucinations. I frequently find him talking to small children and dogs! He wants me to feed them candy and treats! It’s very frustrating because he thinks I’m pretending not to see his new friends,” they said.
“I see animals. The first time I saw one, it was sitting on my chest sticking his tongue out,” a member said, adding, “I see things crawling on the walls.”
Hallucinations may overlap with delusions — strong and irrational beliefs that aren’t based in reality. Delusions can include feelings such as paranoia, jealousy, or suspicion. While someone with Parkinson’s hallucinations may be able to understand that they are having a hallucination, it’s much harder to convince someone that a delusion isn’t real.
One member said, “My husband with Parkinson’s has been having hallucinations of people and vehicles in our fenced-in yard or even in his bathroom or the living room. Early this morning, I found him on his cell phone with 911, reporting that two men were in the house stealing our money. I can deal with his constipation, drooling, and tremors, but these hallucination episodes are scaring me to death.”
“My husband has hallucinations. He sees people in the corner of our garden. He thinks they are interfering with his plants. And also when he gets into bed at night, he says, ‘Look, I have bugs,’” another member said.
Someone else wrote, “The past three days, my dad has been having episodes of extreme paranoia. He’s convinced people are watching him outside and are pointing a magnetic device at the house and interfering with his DBS [deep brain stimulation] implant. My mother and I haven’t slept very well. It’s been a struggle to calm him down.”
Some MyParkinsonsTeam members have described hallucinations that affect other senses, such as smell. “I see people, animals, and insects. Sometimes, I smell something, like when the person was setting a small fire, and I both smelled and saw smoke 😫. Everything seems totally real until I try to get out of bed to interact in some way, and my husband pulls me back in bed and says, ‘Come back. Nothing is there!’” a member said.
Another member related a similar experience, writing, “I’ve struggled with hallucinations, mostly smelling smoke, like coming from a fire without the fire. I know that what’s happening isn’t real. However, it affects me as if it were real. And I know that no one else can see or smell what I do. This is absolutely crazy!”
Other members have discussed auditory hallucinations that cause them to hear sounds and voices. “I see shadows and silhouettes, but mostly I have hallucinations when I hear things like somebody trying to break in,” one member explained. “I have a dog, and now I just tell myself that if Lucy barks, there’s something to be worried about. But if she doesn’t, then it’s OK.”
Another team member said, “I also have auditory hallucinations, mostly sounds like people whispering near me. But sometimes, I distinctly hear someone call my name.”
With tactile hallucinations, someone with Parkinson’s may feel an uncomfortable sensation. “The thing that bothers my husband the most is that he thinks there are bugs in his shoes that are biting his feet,” a member shared.
Medical professionals and researchers sometimes use the term sundowning, which refers to confusion or agitation that occurs at dusk or in low light. Sundowning can affect people with Parkinson’s and make hallucinations more likely to happen in dim light or at nighttime.
“I now hear voices coming from my refrigerator. It sounds like someone is doing a radio show, and I can hear them constantly talking, but it’s muffled, so I can’t understand what they are saying. There is the sound of distant music, too. It has happened now a few times, and I am noticing it’s after sundown, which makes sense,” a MyParkinsonsTeam member said.
If you or a family member is having hallucinations, it’s important to get professional medical advice. A healthcare provider can help you understand the cause of hallucinations to see if medication changes or other treatments may help. Sometimes, hallucinations can be managed by:
Remember, the experience of hallucinations isn’t uncommon in people with Parkinson’s disease. Help is available, and there are treatment options. Talking with your healthcare provider is an important first step.
On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.
How do Parkinson’s hallucinations affect you? Let others know in the comments below.
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I Have Had A Few Hallucinations Before, But I Knew They Were Not There. That’s Been Several Years Ago Now, But None Since. Is This Possible
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So funny. My Dad said the house was surrounded by a swimming pool. He thought that was so funny. I loved seeing him laugh
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