FOR THE PARKINSON’S PATIENT

Emotional guidance for living with Parkinson’s psychosis

Last updated Oct. 1, 2024, by Mary Chapman
Fact-checked by Patrícia Silva, PhD

Having hallucinations or delusions can be alarming. You may see, feel, or hear things that don’t exist. Or you may believe something that doesn’t make sense but still seems true to you. More than half of people living with Parkinson’s disease will ultimately have these experiences, known as Parkinson’s psychosis.

Symptoms can range from mild to severe and can significantly affect your life. You may become confused or smell nonexistent odors, for example, or believe people are plotting to harm you. You may become agitated or mistreat loved ones.

You also may become isolated and withdraw from others if friends and family don’t understand what you’re experiencing and why.

Parkinson’s disease mental health conditions, such as psychosis, depression, and anxiety, aren’t as well known as motor symptoms are. They also can worsen over time and make disease management even harder and more complicated.

While it’s understandable to feel overwhelmed by the situation, take heart in knowing there are steps you can take to support your mental well-being and help improve your quality of life.

Mental health and Parkinson’s psychosis

Parkinson’s psychosis can be from changes in the brain, medication side effects, or delirium, a state of sudden confusion that affects focus and awareness.

Whatever is causing your condition, seeing or hearing things that aren’t there or harboring irrational beliefs can make you feel apprehensive and agitated.

“I have patients who have called the police and the police comes thinking that somebody died and nobody died, and they tell things to the police that aren’t true because they are hallucinating,” says Irene Litvan, MD, director of the Parkinson and Other Movement Disorders Center at the University of California San Diego.

If your psychosis isn’t treated, you may have problems sleeping, become stressed, or be at risk for safety issues such as falling.

Talking to your doctor

If you are having mental health issues such as hallucinations and delusions, it’s important that you discuss these experiences with someone on your care team as soon as possible. You also should tell anyone who is living with you or helping care for you.

Doing so can take courage. You may feel embarrassed, self-conscious, or even frightened. But don’t ignore your symptoms, even if they are not really bothering you.

Eventually, your condition may affect your daily life and your relationships, including with family and other loved ones. Explaining to your doctor what you’re going through is key to getting a diagnosis, figuring out the cause, and developing a treatment plan.

When talking to your doctor, be as specific as possible. Include specific details of your psychotic episodes as best as you can, such as where and when they happened, and how you were feeling at the time, for instance, were you tired, hungry, or stressed.

Treating Parkinson’s psychosis

Your doctor will evaluate your mental health symptoms, based on what you tell them, your Parkinson’s stage, and your medical history.

If you’re experiencing hallucinations or delusions, your doctor will determine whether they’re due to an infection — typically a bladder infection or pneumonia — or other condition not related to the neurodegenerative disease.

If you are diagnosed with psychosis, your doctor will create a Parkinson’s psychosis treatment plan. It may include adjusting your Parkinson’s medication, which is a common cause of the condition.

They also may refer you to a counselor who can discuss coping strategies with you and your family and any caregivers. Further intervention may include Parkinson’s psychosis medication or more specialized care such as a psychiatrist.

Other mental health issues, such as anxiety and depression, also may be addressed with medication, suggested lifestyle changes, or help from a support group.

Support groups and resources

Whether you’re experiencing Parkinson’s psychosis or another mental health issue from it, resources are available for support, guidance, and information.

If your psychosis is not severe, joining a support group may improve your mental health. Such groups offer opportunities to share coping strategies, experiences, and information with people who can relate to your situation.

Always keep in mind that as upsetting as it may be to have psychotic episodes and wonder what’s going on, your experiences are symptomatic of a treatable condition.

“What’s important to understand is that it’s the disease that’s causing [psychosis],” Litvan says. “You’re not going crazy.”

Here is a list of some Parkinson’s support services and online resources. You also should ask your care team about recommendations for mental health support.

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Lifestyle changes

Healthy behaviors can improve your mental health and overall emotional well-being.

Avoid settings where your symptoms usually occur, along with becoming aware of other symptom triggers, such as your mood, diet, and not enough sleep.
Stick to the same sleep routine daily and avoid long naps to potentially help reduce the frequency of hallucinations and delusions.
Follow a meal plan to ensure healthy eating, as what you eat and when can affect how you feel.
Join an exercise class for stimulation and social interaction, being mindful of any physical limitations, to help reduce stress and loneliness.
Simplify your daily schedule to keep from becoming overwhelmed and ask for help with challenging tasks.

Some additional advice that may help you better manage your Parkinson’s psychosis symptoms includes the following:

Bring a friend or relative to doctor visits to help you recall and explain symptoms. They also can take notes at the appointment.
Discuss ahead of time with family or someone you trust how you would want a severe psychotic episode to be handled.
If family and friends can tell when you’re about to have a psychotic event, ask them to alert you to ensure you’re in a safe environment when it occurs.
If you wear eyeglasses or hearing aids, have them checked in case what you are seeing or hearing is being caused or worsened by an issue with them.
Keep some lights on at night to reduce shadows that you might mistake for hallucinations.
If you know you are going to be in an unfamiliar place such as a hotel, especially at night, try to prepare yourself in advance and bring along familiar items like your pillow and a few photos.
Practice mindfulness to help reduce anxiety and depression.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.