When you or a loved one with Parkinson’s disease has hallucinations, it can be confusing and distressing. Hallucinations occur in 20 percent to 40 percent of people with Parkinson’s, and they are the most common form of Parkinson’s disease psychosis (PDP). Hallucinations are perceptions of things that aren’t real. They can occur in different forms. Sometimes, minor hallucinations don’t interfere much with daily life, but in some cases, they impact quality of life for people with the condition as well as their caregivers.

“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.”

What Are Hallucinations With Parkinson’s?

Hallucinations are a type of nonmotor symptom that affects the mind and may coincide with other forms of cognitive impairment that affect memory or thinking. Hallucinations are one type of Parkinson’s 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 or people that aren’t there. These hallucinations often involve seeing people, animals, or deceased family members. Other less common types of hallucinations include:

• Auditory hallucinations of sounds and voices
• Olfactory hallucinations of smells
• Gustatory hallucinations of tastes
• Tactile hallucinations of touch and physical sensations

Hallucinations are believed to be caused by changes in the brain as Parkinson’s progresses, along with side effects of medications, such as levodopa, that regulate dopamine levels in the brain. These types of medications are used to control Parkinson’s and other neurodegenerative conditions such as Lewy body dementia. However, they could be a risk factor for hallucinations.

“I see the silhouette of birds or moths occasionally out of the corner of my eyes. I know it isn’t real and have discussed this with my neurologist.”
— A MyParkinsonsTeam member

Hallucinations with Parkinson’s can vary from one person to the next, but recognizing hallucinations can help ensure that you or your loved one with Parkinson’s gets appropriate treatment. Depending on the severity of the hallucinations, your doctor may recommend making adjustments to your current treatment or prescribing antipsychotic medication.

Here’s how some MyParkinsonsTeam members have experienced hallucinations.

Hallucinations in the Corner of the Eye

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.

Hallucinations With People and Animals

MyParkinsonsTeam members frequently discuss hallucinations of people and animals, which may be more clearly visible than hallucinations in the corner of the eye.

One member shared 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 wrote.

“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.”

A presence hallucination is when someone has a sense of a person being in the room without necessarily seeing them.

Someone else shared, “[My husband] thinks his sister, brother, and deceased mother are in our condo sometimes. We have so far been able to joke about it. He says he sees other people as well, but he tells himself they aren’t real and doesn’t feel threatened by them.”

Hallucinations With Delusions

Hallucinations may overlap with delusions, which are strong and irrational beliefs that aren’t based in reality and 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.

“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.”

— A MyParkinsonsTeam member

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, 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.”

Hallucinations With Sound, Smell, and Touch

Some MyParkinsonsTeam members have described hallucinations that affect other senses, such as smell. “I see people, animals, 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 wrote.

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 he thinks there are bugs in his shoes that are biting his feet,” a member shared.

Hallucinations Often Happen Around Sundown and in Low Light

Medical professionals and researchers sometimes use a term called sundowning, which refers to confusion or agitation that occurs at dusk or in low light in general. Sundowning can affect people with Parkinson’s and make hallucinations more likely to occur 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.

Discuss Hallucinations With Your Doctor

If you or a loved one is having hallucinations, it’s important to get medical advice from your healthcare providers, especially if hallucinations are worsening and becoming unmanageable. You can be evaluated to better understand the cause of your hallucinations to see if adjusting your Parkinson’s medication may be warranted, or if other treatment is recommended. Sometimes, hallucinations can be managed by taking steps such as:

• Engaging in stimulating activities in the evening
• Maintaining a regular sleep schedule
• Keeping some lights on at night

It’s important to talk to your doctor about any signs of mental health problems you or a loved one with Parkinson’s may experience.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. More than 107,000 members come together to ask questions, give advice, and share their experiences with others who understand life with Parkinson’s.

Have you or a loved one with Parkinson’s experienced hallucinations? What steps have you taken to manage hallucinations? Let others know in the comments below or by posting on MyParkinsonsTeam.