Talking to your doctor about Parkinson’s psychosis: What to ask

Parkinson’s psychosis causes hallucinations, delusions, and illusions that can be distressing to witness or experience firsthand. However, know that while it may seem scary, Parkinson’s psychosis is common enough that care teams know how to handle it, and it can be navigated with support.

Talking with your care team is the first step toward managing symptoms. Keep reading for appointment tips and questions to ask your doctor about Parkinson’s psychosis.

Why speaking up matters

Sometimes, early symptoms of Parkinson’s psychosis can seem harmless, and you may not feel it’s necessary to tell your doctor about them. Other times, symptoms may feel unnerving, and you may worry that if you share them, you’ll be stigmatized or lose your independence.

But it’s important to recognize that Parkinson’s psychosis is not a failure on your part, and it isn’t something you can manage on your own. Letting your doctor know what you’re experiencing early on is important for several reasons:

• Early treatment can help prevent symptoms from becoming more severe or difficult to manage. Reporting a minor hallucination or delusion early can allow your doctor to assess its cause and adjust treatment before symptoms become more disruptive.
• Sharing symptoms can provide your doctor with clues to how your care plan is working. Your doctor may need to adjust, add, or remove a medication to balance physical and mental symptoms. Some of these adjustments can also improve psychosis symptoms.
• Your doctor can check for other underlying, treatable causes of your symptoms. People with Parkinson’s are at an increased risk of certain other medical conditions. Some of these, such as urinary tract infections (UTIs), can cause delirium and hallucinations, particularly in older people with Parkinson’s.

Remember, doctors can only treat symptoms they know about, so being open and transparent, as well as alerting your doctor to the first signs of psychotic symptoms, is crucial.

Questions to ask your doctor:

• How common are hallucinations and delusions for people at my stage of Parkinson’s?
• If we address these symptoms now, is it possible to prevent them from becoming more severe or disruptive to my daily life?

Tracking and identifying your symptoms

Psychosis symptoms can be confusing to experience firsthand. Here’s what to look for:

• Hallucinations: hearing, seeing, or feeling things that aren’t there
• Illusions: misinterpreting something real, like a pile of laundry, to be something it’s not, like a person or animal
• Delusions: firm beliefs that aren’t based in reality

Keeping a simple home log

People who are in an advanced stage of Parkinson’s may not be able to track symptoms on their own, because they may not be aware that they’re experiencing hallucinations or delusions. In such cases, it’s helpful for caretakers to track symptoms as best they can. Write down:

• what you observed
• when it happened
• how long it lasted
• how your loved one reacted

Try to track these things for at least a couple of weeks leading up to appointments, so you have something concrete to refer to when discussing delusions with the Parkinson’s specialist. The symptom log may also help you see trends or patterns over time. For example, some people with Parkinson’s psychosis may find that visual hallucinations are more common in the evening.

Questions to ask your doctor:

• Do the experiences I’ve shared sound like they may be Parkinson’s psychosis?
• What do you think may be contributing to these symptoms?
• Are there other details I should track to help monitor symptoms better?
• What next steps would you recommend?

How your medications can affect psychosis

Finding the right mix of medications and dosages to treat Parkinson’s can be a fine balance. Some medications that treat physical symptoms of Parkinson’s, such as tremors and stiffness, can contribute to psychosis.

Make a list of all medications you or your loved one is taking, and note any recent dosage changes. Bring this list to your next appointment.

Questions to ask your doctor:

• Can any of the other medications I’m taking be causing hallucinations or delusions?
• Is it safe to try lowering or stopping any of my medications before adding new ones?
• If we do lower or stop any medications, how might that change my risk for shaking, stiffness, or falls? Should I expect any new symptoms or a worsening of any current ones?

Treatments and lifestyle support

If adjusting or stopping any of your current medications doesn’t help, or if it causes undesirable effects on your physical symptoms, there may be other options to try.

Doctors may suggest adding a medication that treats Parkinson’s psychosis or home and lifestyle modifications that can help with the symptoms. Start the conversation with your doctor so you understand your options.

Questions to ask your doctor:

• Would you recommend trying an antipsychotic medication to treat Parkinson’s psychosis? If yes, what are the possible risks and side effects?
• Should we screen for any other medical issues that may be contributing to my symptoms?
• Are there any home or lifestyle changes you would recommend to help keep me safe?
• If I try an antipsychotic medication and it doesn’t work for me, are there other options we can try?

Tips for your next appointment

It can be challenging to know where to start and how to approach the conversation about Parkinson’s psychosis with your doctor. Coming to the appointment with a symptom log can help you feel prepared. You can also make a list of your Parkinson’s disease psychosis questions ahead of time.

You can open the discussion by saying something like, “Over the last two weeks, I’ve noticed some minor visual hallucinations at home. I wrote down what I experienced, and I’d like to share it with you. Can we talk about what might be causing my symptoms and how to address them? My goal is to stay as independent and comfortable as possible at home.”

Essential next steps for families

Here are some things you can do today:

• Get a notebook or download an app and start recording any hallucinations or delusions you observe over one week. Write down what happened, when, and how your loved one reacted to it.
• Schedule an appointment to go over your concerns. Share your symptom log with the doctor ahead of time if possible.
• Make a list of questions you want to ask the doctor. The sample lists in this article are a great starting point.

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