Preparing for Parkinson’s psychosis: Guidance for caregivers of spouses

Last updated Sept. 16, 2024, by Cathy Garrard
Fact-checked by Patrícia Silva, PhD

Parkinson’s psychosis is a nonmotor symptom of Parkinson’s disease that can affect the quality of life for both your spouse and you as their caregiver.

More than half of people diagnosed with Parkinson’s disease will experience psychosis. These unpredictable behavioral issues, which include hallucinations and difficulty with knowing what is and isn’t real, can add to the stress of caring for a loved one who is also experiencing physical limitations.

Managing Parkinson’s psychosis can be challenging. But our caregiver guidance will help you have a better understanding of your spouse’s Parkinson’s psychosis symptoms so you can look after them as well as your own physical and mental health.

Understanding Parkinson’s psychosis

When your spouse is experiencing a psychotic episode, they may say or do hurtful things. Keep in mind these behaviors are generally a result of the disease, not a personal attack.

“One definition of psychosis is the loss of realistic thinking,” says Guy Schwartz, MD, co-director of the Stony Brook Parkinson’s and Movement Disorders Center at Stony Brook Medicine in New York. “It can be a false belief held by an individual who cannot be convinced of otherwise.”

Symptoms can include:

• severe confusion, also known as disordered thinking
• hallucinations, which is when a person sees things that aren’t there
• delusions, which is believing things that aren’t true.

According to Schwartz, Parkinson’s psychosis may involve visual hallucinations, often of people, insects, rodents, or pets.

“Infrequently, the images are accompanied by auditory hallucinations, typically mumbling sounds made by the people seen,” Schwarts says.

It is possible to treat Parkinson’s psychosis, which is why you should tell your spouse’s doctor if you notice possible Parkinson’s psychosis symptoms.

“If a spouse or caregiver observes hallucinations, delusions, or paranoia, it is important to seek medical attention immediately, usually from a neurologist or psychiatrist ideally with some experience in persons with Parkinson’s disease,” says Michael S. Okun, MD. Okun is the national medical adviser for the Parkinson’s Foundation and the director of the Norman Fixel Institute for Neurological Diseases at the University of Florida in Gainesville.

At first, your spouse may be aware their hallucinations are not real, which is called retaining insight. It may make managing their Parkinson’s psychosis easier for a while. But as the disease progresses, they may lose their ability to know what is and isn’t real.

Warning signs of a psychotic episode

Minor hallucinations and illusions usually start before the more typical visual hallucinations.

According to Schwartz, your spouse may experience presence hallucinations, which is the sensation someone is near when no one is really there. Often it happens when they are alone.

Another type is passage hallucinations, which is the brief appearance of a person, shadow, or animal passing through their peripheral vision. You may notice your spouse moving their head to try to look at it.

If you think your spouse is seeing things, try not to convey your concern. Instead, be patient and reassuring. As soon as you can, reach out to their doctor and explain that they may be experiencing Parkinson’s psychosis.

Hallucinations and delusions

Two of the most prominent symptoms of Parkinson’s psychosis are hallucinations and delusions. Hallucinations are when someone sees, hears, experiences, or senses things that aren’t actually there. Delusions are beliefs that are not based in reality.

Schwartz says that caregivers should try to remember these episodes are brief, usually not lasting more than a few minutes.

Do your best to stay calm. He advises against explaining to them that what is happening is just their imagination. If they say they see a frog at the end of their bed, for example, then just go with it.

“Trying to convince them that what they are experiencing is not real does not truly work in most cases,” he says.

Other suggested strategies for caregivers to try include:

• turning on more lights at night to help reduce shadows that may appear as hallucinations
• keeping dangerous objects in secure locations so no one gets hurt
• arranging furniture and creating pathways to avoid trips and falls
• making sure that anyone who spends time with your loved one is aware of what is happening and accepting their help if they offer it.

Managing symptoms

Talk with your spouse’s doctor about what you should do to help keep Parkinson’s psychosis symptoms under control.

There may be an underlying and treatable medical reason not related to Parkinson’s that has triggered the onset of the psychosis symptoms. Or the symptoms may be caused by medications prescribed for the treatment of Parkinson’s disease.

“The checklist of items to ask your healthcare provider about includes checking for a urinary tract infection, improving sleep, and simplifying Parkinson’s disease medication lists,” Okun says. “Decreasing dopamine dosages and taking medications at lower doses, as well as taking them in smaller dosages more frequently, are common strategies used by experts to manage symptoms.”

Medications that boost dopamine signaling are often prescribed to treat Parkinson’s symptoms. However, high levels of dopamine can interfere with brain activity and lead to psychosis.

For this reason, the dosage of this type of treatment needs to be well managed: If too high, it can lead to psychosis. If too low, it may cause motor symptoms to become worse.

Okun says there are other medications that can help with sleep and psychosis that don’t usually make motor symptoms worse. You should discuss other treatment options with your spouse’s doctor.

Antipsychotic medications also are used to treat hallucinations and delusions associated with Parkinson’s psychosis, he says.

If your loved one ever becomes agitated or aggressive, first assure them they are safe and keep your movements to a minimum.

To manage these situations in the future, Schwartz recommends you ask your doctor about prescribing a low-dose, short-acting tranquilizer that you can keep on hand in case it happens again.

But if you ever feel your safety is threatened — or are worried your loved one may harm themselves — call 911 right away.

How to avoid caregiver burnout

Caring for someone with Parkinson’s psychosis can be difficult and distressing. It can cause you to feel extreme fatigue, frustration, anger, and anxiety. That’s why it’s essential to take care of yourself, too.

Suggested self-care strategies include:

• getting enough sleep, eating well, and doing regular exercise, such as yoga, which can help reduce stress, anxiety, and depression
• stimulating your brain by making time for activities you enjoy, such as reading, journaling, listening to music, or doing a favorite hobby
• waking up an hour before your loved one usually does to have time to focus on yourself
• asking family members and friends to help you when you’re feeling overwhelmed
• cutting yourself some slack and treating yourself like you would a friend who is coping with a difficult situation
• doing something outside of your normal routine to help you maintain an identity beyond that of a caregiver.

Support for Parkinson’s caregivers

When you are ready to look into resources and support for Parkinson’s caregivers, start with your spouse’s doctor.

Ask if they know of local support groups where caregivers can learn from one another about what has worked and what didn’t.

Schwartz also refers his patients to the caregiver resources page of the American Parkinson Disease Association, where caregivers can find a wealth of information about Parkinson’s, including psychosis.

The Parkinson’s Foundation has a free helpline at 800-4PD-INFO (800-473-4636). You can also email questions to [email protected].

Parkinson’s News Today is a resource for staying up to date about Parkinson’s, including psychosis. You also can find first-person articles, online forums, and social media platforms, including Facebook and Instagram.

At some point, you may need to accept that it might not be possible to continue to take care of your loved one at home. One way to get recommendations for skilled nursing facilities is from local Parkinson’s support groups and community organizations.

You can also use the Medicare Nursing Home Compare tool to find facilities near you or check out Eldercare Locator, a nationwide service that connects caregivers with local support services.

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.