Caring for a Loved One With Parkinson's Disease Psychosis
Parkinson’s disease psychosis (PDP) affects nearly half of those living with Parkinson’s disease, a condition of the nervous system that causes tremors, muscle stiffness, and movement problems. During an episode of Parkinson’s disease psychosis, your loved one may have delusions and unfounded suspicions or speak to “visitors” or “forms” that aren’t there. As surreal (and scary) as an episode of Parkinson’s disease psychosis feels, it can help to remember the “imaginings” of Parkinson’s disease psychosis are a common complication and it’s crucial to seek help. Here’s what you need to know.
People living with Parkinson’s disease are more likely to develop Parkinson’s disease psychosis if they have lived with Parkinson’s disease for 10 years or more or take medications that improve their motor symptoms but adversely affect their mood. They’re also more likely to develop psychosis if they have had sleep problems such as sleep apnea, vision problems such as double vision or trouble with depth perception, as well as hearing problems or depression.
Since Parkinson’s disease psychosis has been linked to specific Parkinson’s medications, it’s especially important to know your loved one’s medications and side effects they experience. On top of that, make sure you can recognize the signs of psychosis so you can take action as soon as possible. Psychosis can take on one of three forms:
Hallucinations: Perceiving something that isn’t there through sight, hearing, taste, smell, or touch
Illusions: Confusing two things that are real—furniture and people, for example
Delusions: Extreme suspiciousness or paranoia
If you think your loved one may be at risk of Parkinson’s disease psychosis, prepare for a potential episode:
Arrange furniture to make clear, safe paths
Store dangerous items like kitchen knives securely
Hide keys that aren’t needed—car keys, for instance, if your loved one shouldn’t be driving
It’s not pleasant or easy, but know that you can handle an episode of Parkinson’s disease psychosis by taking the following steps:
Call your loved one’s doctor
Try to remain calm
Avoid sudden movements
Don’t get too close
Listen to your loved one patiently
Don’t argue or try to reason—psychosis isn’t reasonable
Appease your loved one when you can by acknowledging—and not judging—what they are experiencing. If “the dog” needs to be fed, for example, “feed the dog”
Reassure your loved one as best you can
- Don’t hesitate to
call 911 immediately if you feel you or your loved one is in danger
Many effective treatments for Parkinson’s disease psychosis are available. The goal is to make mental symptoms better without making physical symptoms worse. All treatments have benefits and risks, and each person reacts to treatment differently. Your healthcare team should help you weigh the options from both a neurological and psychiatric perspective.
Remember, as frightening as Parkinson’s disease psychosis can be, you and your loved one aren’t expected to figure it out on your own. Your healthcare team experts know how to help. And as a caregiver, don’t forget to take care of yourself, too; practice self-care strategies to minimize stress and lean on family and friends for support so it doesn’t get too overwhelming. Watching someone you love lose their handle on reality can be devastating, and it’s key not to keep those feelings bottled up. The people around you want to help, so turn to them. Their support (and perhaps a few massages or therapy sessions) will help you be an even better caregiver for your loved one.