Physician Panel: Ask the Experts
8 Questions to Ask a Doctor About Parkinson’s-Related Psychosis
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Most people are aware of the physical symptoms of Parkinson's. What’s less commonly known, however, is that approximately 40 percent of people with the disease also experience cognitive side effects, like delusions and hallucinations, according to a paper published in 2014 in the journal Practical Neurology.
Referred to as Parkinson's psychosis, such symptoms are usually mild — for example, a person might see a cat that isn’t there. But they can also worsen over time or be compounded by dementia, leading to fear or paranoia. In fact, psychosis is one of the chief reasons that people with the disease enter a nursing facility, and it’s also responsible for nearly a quarter of all Parkinson's-related hospitalizations.
Even if your loved one feels embarrassed by them, it's important to discuss the signs of psychosis with your medical team so you can develop a plan of action. Start here, with these eight questions for the neurologist.
Question 1: What’s causing these hallucinations or delusions?
Although psychosis can be a symptom of Parkinson’s, it may be brought on by the medications used to treat the disease. With Parkinson’s, a person’s body gradually stops producing the brain chemical dopamine — a reaction that many medications try to counteract as a way to control motor symptoms. Unfortunately, this increase in dopamine supplied by the medication can also stimulate parts of the brain involved in psychosis.
There are other potential causes too. One theory, says Veronica Santini, MD, a neurologist and movement disorders specialist at Stanford University, in Palo Alto, California, is that the hallucinations are caused by vision problems, like double vision, another symptom of Parkinson's. The ability to think clearly could be a factor as well, says Dr. Santini, though she notes that “we see [psychosis] in people who don’t have any cognitive problems.”
Question 2: What can we do about psychosis?
If your loved one isn’t bothered by the symptoms (and isn’t doing anything dangerous because of them), you may not have to do much. Many patients say that while they have hallucinations, they know they're not real, says Santini. “In a scenario like that,” she says, “it's not necessarily something that you have to chase after and treat.”
In other cases, however, the hallucinations may be upsetting — even if the person with Parkinson’s knows they're not real. Says Santini, “I had a patient who saw people in her bathroom, and every night when she got up to go to the bathroom, the people were there. She knew they weren't real, but it really bothered her having people looking at her in the bathroom."
In such a case, whether the person knows the hallucination is real or not, you may want to consider whether the symptom should be treated.
Question 3: What are the treatment options?The first step is to look for other medical problems that might possibly be triggering the symptoms, like an infection, says Santini. While people with Parkinson's don’t have a heightened risk for urinary tract infections, say, such an infection could cause cognitive side effects.
The next question to ask is whether it’s possible to change or adjust the drug that’s being used to treat the Parkinson's. The goal is to minimize hallucinations and delusions without worsening motor symptoms.
Question 4: Is there a medication that could help?
Classic antipsychotic medications can treat mood conditions by blocking dopamine — and while that can help with psychosis, says Santini, it could also worsen motor symptoms.
A new antipsychotic drug, pimavanserin, was approved by the Food and Drug Administration in 2019; it involves serotonin receptors rather than dopamine levels, making it a good option for some people. “But,” says Santini, “this medicine takes about six weeks to start working.”
Santini also prescribes medications that are used to treat Alzheimer’s disease, including donepezil and memantine. These can “get rid of some hallucinations,” she says, “particularly if the patient has some cognitive impairment."
Question 5: Is there anything I can do to minimize the triggers?
Too little sleep, dehydration, and even certain times of the day — our sight can become confused in the early evening, for example, when the sun is going down — can be triggers, says Santini. Try listing possible triggers in a diary and, if possible, make a plan to help your loved one avoid them as much as possible.
Question 6: What should I do to help my loved one during hallucinations or delusions?
Staying calm and providing reassurance can help — and so can reaching out and “touching” the hallucination, says Santini. Try saying something like, “I know it might scare you, but I'm here, and I won't let anything happen. Let's go see what's there.”
It's also important to make the home as safe as possible. For example, Santini advises people not to keep firearms, weapons, or even car keys lying around, and to use the wheelchair’s safety belt if there’s a chance that your loved one could try to jump out and run away.
Question 7: What can I do to take care of myself given the psychosis?
Remember that you’re not alone, says Santini. You, your loved one, and the neurologist are all on the same side. It’s also important to remember that you don’t have to shoulder the responsibility alone: While some measures are within your control — like maintaining a safe home — psychosis may need to be treated by the neurologist with medication.
Question 8: How long will the psychosis continue?
Hallucinations and delusions tend to come and go, but they probably won’t stop altogether. Says Santini, “You might always have [to live with] them.”
The good news, though, is that psychosis doesn’t necessarily worsen along with the Parkinson’s, says Santini. As long as the symptoms are mild, and your loved one isn't acting on them, you may be able to live with them. “The problem is when they become unmanageable,” she says. That's why it's important to talk with the neurologist about any changes you notice, and to have a conversation about treatment if it becomes necessary.
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