• Hallucinations and delusions can be a major source of stress for caregivers caring for people living with Parkinson’s disease.
• Finding ways to manage hallucinations and delusions can improve quality of life for you or the person you care for.
• Discuss symptoms of psychosis with your or your loved one’s doctor right away.

Hallucinations and delusions are symptoms of Parkinson’s disease psychosis. Between 20 percent and 40 percent of individuals with Parkinson’s report experiencing psychosis symptoms. Managing hallucinations and delusions can be more challenging than managing motor symptoms of Parkinson’s, such as tremors, muscle stiffness, slowed movements, and loss of balance.

A combination of interventions, including medication and changes around the home, is often necessary to reduce hallucinations and delusions. Learning how to react to hallucinations and delusions can help caregivers better respond when they do occur.

What Are Hallucinations and Delusions?

Hallucinations are not dreams. They occur when a person is awake. Sometimes people are aware of their hallucinations — this is called insight. Hallucinations are categorized by the five senses:

• Visual hallucinations occur when a person sees something that isn’t actually there. These types of hallucinations are the most common among people with Parkinson’s.
• Auditory hallucinations are sounds that are not there.
• Olfactory hallucinations occur when a person smells a smell that isn’t present.
• Tactile hallucinations are experiences of feeling something that isn’t there.
• Gustatory hallucinations occur when a person experiences a taste that has no source.

Delusions are false beliefs that are often irrational. They are less common than hallucinations — about 8 percent of people with Parkinson’s disease experience delusions, according to the Parkinson’s Foundation. Often people who have delusions believe they are being mistreated and can become angry or paranoid as a result.

People frequently experience jealousy delusions — usually a belief that a spouse is being unfaithful. Persecutory delusions, a belief that someone is conspiring against you or trying to hurt you, are also common. These types of delusions usually involve a spouse, family member, or caregiver.

“The delusions make it hard to handle. They are directed at me and are very hurtful,” said a MyParkinsonsTeam member caring for a spouse with Parkinson’s.

Risk factors for hallucinations and delusions include:

• Advancing cognitive impairment
• Depression
• Sleep disorders
• Medication changes

Read more about how to recognize hallucinations and delusions.

Communicating With Your Doctor

Unfortunately, fear, embarrassment, or stigma can cause people to avoid sharing symptoms of Parkinson’s psychosis with their health care providers. It’s important to tell your doctor if you or a loved one experiences hallucinations or delusions, so you can discuss possible solutions.

Your doctor can help determine the cause of hallucinations and delusions. They may be caused by an infection, like a urinary tract infection, or they could be a side effect of a treatment for an unrelated condition. Hallucinations and delusions can also be an indication of another medical condition, such as dementia with Lewy bodies. Dementia with Lewy bodies is a movement disorder that can be difficult to distinguish from Parkinson’s disease.

Whatever the cause of the psychosis, your doctor can recommend treatments or strategies to help you and your family better deal with episodes. One MyParkinsonsTeam member shared tips from their spouse’s doctor: “According to his neurologist, you should always be honest. His neurologist coaches him to listen to me because I am looking out for his best interests, and I will not lie to him about what is real and what is not. He seems content with that.”

Medication Management

Sometimes, drugs used to treat Parkinson’s are the cause of Parkinson’s psychosis. Adding a new Parkinson’s medication or changing the dosage of an existing one can lead to hallucinations or delusions. For this reason, medication management can be one of the most important tools for addressing hallucinations and delusions. Never hesitate to discuss your or your loved one’s psychosis symptoms with your health care team. They may recommend changing a medication, reducing a dosage, or adding a new medication to your treatment plan.

Read more about treatment options for Parkinson’s psychosis.

Practical Tips for Caregivers

Parkinson’s psychosis can be extremely stressful for family members and caregivers to manage, and it can sometimes lead to dangerous situations. “My mother isn’t sleeping well because she’s terrified Dad will get outside and get hurt or lost,” one MyParkinsonsTeam member wrote.

Another member shared, “My husband took off at 2 a.m. to get help because he ‘saw’ people in the house killing me. He totaled his new Jeep and ended up in the hospital for four days.”

Psychosis is one of the top reasons for transitioning from home care to nursing care. Finding ways to manage a loved one’s hallucinations and delusions can help improve quality of life for you and the person you care for.

Reacting in the Moment

It can be hard to know how to respond to a hallucination or delusion while it’s happening. A member described a friend with delusions: “She believed that up to 10 children come and stay in her house, and she is responsible for their care. I didn’t know whether to tell her they are not real or just go along with her.”

The right response will vary, depending on the person and the particular circumstances. In all cases, doing your best to remain calm and patient will go a long way to helping manage the situation. One member explained how their spouse supported them during a disturbing hallucination: “The other day I had one scary one about mosquitos in my room, hundreds of them. My wife came and held my hand and laid down with me.”

Hallucinations With Insight

If a person is hallucinating but has insight, you can explain that the hallucination isn’t real. One member shared this strategy when helping their spouse: “I just talk with him about what he is seeing and then show him that nothing is there. I never try to pretend what he sees is real.”

Another caregiver wrote, “If his hallucinations are during the day, I will tell him he is hallucinating and ask him to show me where or what is the problem. That way he ends up seeing there is nothing there.”

Hallucinations Without Insight

If the person has lost insight, it may be better not to challenge their reality. Instead, you can offer a distraction, move to another room of the house, or start a new activity. One caregiver explained, “If it is the middle of the night and he wants to get dressed and go to work, I generally ask him to come and sit with me first so I can go to sleep.”

Delusions

Challenging a person’s reality during a delusion is not recommended. Do your best to stay calm and offer reassuring words. One member of MyParkinsonsTeam shared advice they’d received for caring for their spouse: “I was told not to argue with him or try to convince him that delusions are not real. Just calmly convince him that he is safe and will not come to harm.” You can also ask questions about what the person is experiencing to help them feel supported.

Responding to Anger

Sometimes a person experiencing hallucinations or delusions will become angry or aggressive. The following tips can help de-escalate the situation:

• Offer reassuring words such as, “You are safe.”
• Speak slowly, with a calm tone.
• Ask questions about the person’s feelings.
• Listen without interrupting.
• Avoid sudden movements, and give the person space so they don’t feel threatened.

Think through an emergency plan in the event that your loved one becomes a danger to themselves or to you and others. Your family member’s neurologist or other health care providers can help you plan ahead.

Household Changes

Making changes around the house can reduce the likelihood of psychotic episodes and help minimize danger when they do occur.

Increase Lighting

Visual hallucinations frequently occur in low light. Keeping lights on, especially at night, can minimize the chance of visual hallucinations.

Secure Objects

Sometimes a person experiencing hallucinations or delusions can behave in ways that cause harm to themselves or others. Consider securing firearms, kitchen knives, tools, car keys, or other objects that a person could use in an unsafe way.

Control Access

Members of MyParkinsonsTeam report situations where a loved one tries to leave the home during a delusion. “My dad has now experienced two episodes (that we know of) where he got up, got dressed, and tried to leave the house. Thank God his difficulty in opening the front door awakened my mother!”

Depending on the circumstances, it may be appropriate to control or monitor a person’s ability to exit the home.

Finding Support

Caring for a loved one with Parkinson’s requires a team. If you can, seek help from other family members, friends, or professional aides so the full responsibility isn’t on one person’s shoulders.

Connecting with other caregivers through support groups and on MyParkinsonsTeam can help you find understanding and answers to questions about your loved one’s behavior. Seeking support is an important part of taking care of yourself as you provide care for your loved one.

Read more about self-care tips for Parkinson’s caregivers.

Find Your Team

By joining MyParkinsonsTeam, members gain a community of more than 90,000 people living with Parkinson’s disease or caring for someone with Parkinson’s. Members understand the challenges of Parkinson’s, including hallucinations and delusions.

Have you or a loved one experienced Parkinson’s hallucinations or delusions? Do you have any tips for managing hallucinations or delusions? Share your thoughts in the comments below or post on MyParkinsonsTeam.