Many people with Parkinson’s experience hallucinations and their loved ones and care partners often ask what they can do to help.
We asked Dr. Pravin Khemani, Movement Disorder Specialist, to tell us a bit about hallucinations in PD. Here is what he had to say:
“Hallucinations in PD are a result of psychosis which is the technical term for ‘break from reality’. Psychosis manifests as visual, auditory, or presence hallucinations, delusions, and illusions. Delusions or fixed irrational beliefs (e.g., partner is replaced by an imposter) are the hardest to treat. However visual hallucinations are very treatable with adequate doses of medicines such as pimavanserin or quetiapine.
Not everyone with Parkinson’s gets psychosis, therefore, it is not a natural progression of the disease in everyone with PD. A movement disorder neurologist or a neuropsychiatrist should be able to effectively treat psychosis in PD. Certain medications should be avoided, therefore, it is best to seek the opinion of a specialist who is very familiar on how to treat psychosis in PD.”
Tips from a care partner (Lianna Marie):
- Encourage your loved one to talk about their hallucinations. This will help you to better support them and understand what they are going through. My mom experienced visual hallucinations in the late stages of her disease. Sometimes her hallucinations were scary (e.g., she thought there was a big black hole in front of her that her grandkids kept falling into), while other times not (e.g., her deceased husband was sitting in her room with her).
- We figured out that these hallucinations and delusions were mostly a side effect of a drug (amantadine) that she took for her dyskinesia through trial and error. At first, we tried reassuring her that what she was seeing wasn’t real. This helped calm her down initially. However, as the hallucinations got worse and she became more frightened by them, we opted for medication changes.
- It was a delicate balance trying to keep her dyskinesia to a minimum while warding off hallucinations. By reducing (not eliminating) the meds she took for dyskinesia, the hallucinations mostly stopped.
- If the hallucinations are not frightening and your loved one is aware that they are not real, they may choose to live with this side effect. If, on the other hand, your loved one is frightened, you will want to talk with their doctor to find possible solutions. The doctor will check for other causes of these symptoms. Things like an imbalance of chemicals in the blood; improper kidney, liver, or lung function; and certain infections can cause these mental disturbances.
- Ensure that you tell the doctor about all medications, including herbal therapies, your loved one is taking. Other medications that your loved one may be taking, including over-the-counter meds, could also be responsible.
For more information on caring for someone with Parkinson’s, including details on how to deal with other cognitive challenges, please check out our e-book, Caregiving for Parkinson’s here:
Caregiving for Parkinson’s: The Top 20 Questions & Answers About Caring for Someone with Parkinson’s
Interested in an in-depth dive on all topics related to caring for someone with Parkinson’s? Check out our hard copy of Everything You Need to Know About Caregiving for Parkinson’s Disease here:
Everything You Need to Know About Caregiving for Parkinson’s Disease
Pravin Khemani, MD
Swedish Neuroscientist Specialists
Movement Disorders
Medical Disclaimer: Dr. Khemani’s comments are not prescriptive advice and do not supplant the directions of your treating physician. His views are his alone, based on years of practice and experience in treating Parkinson’s disease, and do not represent the views of his employer or any other organization. Always make medical decisions only under the guidance of your treating doctor.