Sign up for this email series:
Hallucinations and delusions are symptoms of Parkinson’s disease psychosis. Parkinson’s psychosis impacts between 20 percent and 40 percent of individuals with Parkinson’s disease. Managing hallucinations and delusions can be more challenging than managing motor symptoms of Parkinson’s, like tremors, muscle stiffness, slowed movements, and loss of balance. A combination of interventions, including medication and changes around the home, are often necessary to manage hallucinations and delusions.
Delusions are false beliefs that are often irrational. They are less common than hallucinations — about 1 in 10 people with Parkinson’s disease experience delusions. 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,” a wife caring for her husband with Parkinson’s shared on MyParkinsonsTeam.
Some risk factors for hallucinations and delusions include advancing cognitive impairment, depression, sleep disorders, and medication changes.
Unfortunately, fear, embarrassment, or stigma can cause people not to share symptoms of Parkinson’s psychosis with their health care providers. It’s important to tell your doctor if you experience 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 an 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, your doctor can recommend treatments or strategies to help you and your family better deal with episodes of psychosis. One member shared tips from her husband’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.”
Drugs used to treat Parkinson’s disease are sometimes the cause of Parkinson’s psychosis. Adding a new Parkinson’s medication or changing the dosage of an existing medication 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.
Dopamine therapies and anticholinergics are treatment types that can lead to hallucinations and delusions. If you or a family member are experiencing symptoms of Parkinson’s psychosis, your doctor may recommend adjusting or discontinuing medications in these classes.
Hallucinations and delusions can be a side effect of dopamine therapies. Parkinson’s disease develops when the brain cannot produce sufficient dopamine, a neurotransmitter that controls movement and emotions. Dopamine therapies, also referred to as dopaminergic drugs, work by increasing dopamine levels in the brain. Some dopamine therapies work by converting the brain chemical levodopa to dopamine, and others mimic dopamine’s effects in the brain (dopamine agonists).
Anticholinergics reduce the levels of acetylcholine — a neurotransmitter that helps regulate motor functions. Hallucinations can be a side effect of these medications, especially for people over age 70.
Your neurologist may work in concert with a psychiatrist and your primary care physician to help address symptoms of Parkinson’s psychosis.
Many antipsychotic drugs can worsen Parkinson’s disease motor symptoms because they affect dopamine levels. There are a few medications that can be used to treat Parkinson’s psychosis. Your doctor can help you understand the benefits and drawbacks of the various options.
MyParkinsonsTeam members share their experiences with medication and Parkinson’s psychosis:
Parkinson’s psychosis can be extremely stressful for family members and caregivers to manage, and 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.
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.
If a person is hallucinating but has insight, you can explain that the hallucination isn’t real. “I just talk with him about what he is seeing and then show him that nothing is there. I never try and pretend what he sees is real,” a spouse on MyParksinsonsTeam commented. 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.”
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.”
Challenging a person’s reality during a delusion is not recommended. Do your best to stay calm and offer reassuring words. One spouse on MyParkinsonsTeam commented, “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.
Sometimes a person experiencing hallucinations or delusions will become angry or aggressive. The following tips can help de-escalate the situation:
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.
Making changes around the house can reduce the likelihood of psychotic episodes and help minimize danger when they do occur.
Visual hallucinations frequently occur in low light. Keeping lights on, especially at night, can minimize the chance of visual hallucinations.
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 potentially use in an unsafe way.
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.
Caring for a loved one with Parkinson’s requires a team. If you can, seek help from other family members, friends, or professional aides. 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.
By joining MyParkinsonsTeam, members gain a community of more than 67,000 people living with Parkinson’s disease or caring for someone with Parkinson’s. Members understand the challenges of Parkinson’s, including hallucinations and delusions.
Here are some recent question-and-answer threads on MyParkinsonsTeam about managing 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.
Connect with others who are living with Parkinson's disease. Get members only access to emotional support, advice, treatment insights, and more.sign up