Your Parkinson’s Patient: Understanding Onset of Psychosis
By Richard B. Dewey, Jr., MD
Tremors, rigidity, and slowness of movement are the tell-tale signs of Parkinson’s disease, a progressive neurodegenerative disorder that affects approximately one million Americans. Most health care professionals charged with caring for Parkinson’s patients either in long-term care settings or in their homes expect and are familiar with these motor symptoms. However, non-motor symptoms (those unrelated to physical movement) are just as common and, in many cases, more disabling.
As patients age, their Parkinson’s progresses and certain non-motor features become common, such as hallucinations and delusions (Parkinson’s disease psychosis), blood pressure regulation problems, sleep problems, and cognitive impairment. Parkinson’s disease psychosis, commonly called PDP, is an under-recognized aspect of Parkinson’s which may impact quality of life for persons experiencing it, and for their caregivers. Studies show that the onset of PDP is a significant risk factor for placement in long-term care facilities. Spouses and adult children, who often provide day-to-day care, find it increasingly stressful to handle the false and irrational beliefs held by their loved ones.
What is Parkinson’s Disease Psychosis?
More than half of all people with Parkinson’s will develop PDP over the course of their disease. A significant subset of them will find the condition disabling as they experience symptoms like illusions (mistaking a real object for something else), hallucinations, and delusions. Not only do the PDP symptoms hurt a patient’s general emotional state and relationships with family and caregivers, they also limit patients’ participation in daily activities, thereby affecting caregivers as well.
Only 10 to 20 percent of patients proactively report their symptoms to their doctor. Therefore, many are not diagnosed in a timely fashion (or remain undiagnosed) due to misdiagnosis or failure to understand that the symptoms are associated with Parkinson’s. Another reason for a delayed diagnosis is that those affected and their families are afraid or embarrassed to share the symptoms with their physician. It can be challenging to get an accurate patient history, so physicians and other health care providers need to be proactive in asking about this common complication of the disease.
What Causes PDP?
PDP is believed to result from a combination of the neuropathology of Parkinson’s itself and the dopaminergic drugs used to treat it. Further, certain drugs such as amantadine, dopamine agonists, and selegiline tend to increase the risk of PDP in elderly patients who have cognitive impairment. It is also not uncommon for the onset of psychosis to be triggered by infections, especially urinary tract infections, and by medications used to treat them.
Hallucinations are false perceptions that manifest differently for each person. For example, many of my patients report seeing something that is not actually there out of the corner of their eye. It is also quite common for patients to report seeing people or animals that are inside the room or right outside of a window. The hallucinations may look very real or appear black and white, fuzzy, or even cartoon-like. The person experiencing PDP may speak to them or even approach them, but find they suddenly disappear. These types of hallucinations tend to occur more at night and can be very disturbing.
It is also possible for patients to hear things that are not there. For instance, patients may hear a radio in another room or voices talking in the hallway. Less common are tactile hallucinations like feeling things on the skin, olfactory or smelling aromas not detectable to others, and taste hallucinations.
When hallucinations first begin in PDP, most patients have good insight into the problem and recognize that they are not real. Some will even “enjoy” them for a time. But without prompt treatment, the hallucinations tend to increase in frequency and at some point patients cross a line where they begin to think the hallucinations are real. When that happens, the hallucinations start to become frightening and threatening. As a result, patients become severely disabled and these more “advanced” patients are the ones typically found in long-term care settings.
Delusions are false, irrational beliefs that are usually paranoid in nature. For example, patients might think that someone (often a spouse) is trying to steal their money. Or they may be irrationally convinced that a partner is committing adultery, even when there is no evidence to support such thinking.
As PDP progresses and psychosis worsens, the delusions tend to become more bothersome. At times, they can be threatening and debilitating for patients and their family members. For example, many delusional patients become convinced that their loved ones are in physical danger or under assault. Patients may even take action by calling the police for help. Given how real the delusions feel to the person who has them, it may be difficult for caregivers — family members or health care professionals — to provide comfort.
Case Study – Diane’s Story
Diane S. married her husband, Jay, over 50 years ago and they raised their family in California. In 2009, Jay was diagnosed with Parkinson’s disease and eventually retired from a long career as a professor of art at several southern California community colleges. Beyond dealing with his movement and mobility symptoms, Jay would have long conversations, as Diane noticed some years ago, with his brother, who wasn’t actually in the room. Other times, he would claim to see black cats all over the house or “weirdos” in the shower. Jay also became hyper vigilant when Diane was at the computer, convinced someone (not her) was accessing their bank account. Though Diane and Jay have sought treatment for his hallucinations and delusions, the available, off-label medications have not provided effective relief. For Diane, caring for Jay is very stressful, and she feels she must watch over him at all times to keep him safe. On occasion she asks her daughter for support or brings in paid caregivers — but at a prohibitive cost. So Diane has cut back on her thriving therapy career to care for Jay and reduced the time she spends practicing yoga or playing the cello. While she attends several local support groups, she finds it tiring to have to explain to people —repeatedly—what PDP is and what it is like for both her and Jay.
Impact of PDP and Caregiver Burden
When the hallucinations and delusions become fully developed, caregivers may find caring for a loved one too overwhelming, leading them to face a difficult choice: bring in outside help to manage their loved one at home or transfer their loved one to a long-term care facility. Placement in long-term care facilities is associated with a higher risk for mortality, despite the fact that PDP does not necessarily indicate the end stage of the disease.
One of the major problems in managing PDP is that patients often try to hide the problem because of embarrassment or fear of being thought “crazy.” In caring for such patients, it is important to understand that these symptoms are commonly associated with Parkinson’s disease and not something to be ashamed of or embarrassed about. When hallucinations or delusions occur, a doctor should be notified so a plan can be put in place to manage the condition. Health care professionals providing home care should encourage their clients to report the symptoms to their physician as well. If the PDP symptoms don’t bother the patient, then they may not warrant immediate attention but should always be monitored. Should treatment be required, the goal is to lessen the impact of the PDP while maintaining optimal management of motor symptoms.
There are two schools of thought on how to treat PDP. First, since Parkinson’s medications can exacerbate PDP symptoms, a physician can adjust Parkinson’s medication dosing to determine if there is a positive effect on the incidence of PDP symptoms without significantly worsening motor control. Next, it is common to try adding medications to a PDP patient’s regimen. A number of drugs are currently used to treat symptoms of PDP, generally in the class known as the atypical antipsychotics. There are several studies of these treatments in PDP that indicate they might be helpful, but there are significant associated risks, black box warnings, and the potential for worsening of motor symptoms. None of these treatments are approved by the Food and Drug Administration for this purpose, which means we don’t fully understand either their safety or effectiveness for PDP.
Fortunately, a better treatment for PDP may be on the horizon. Pimavanserin is a new chemical entity that has completed Phase III clinical development. Unlike the atypical antipsychotics, this drug does not work by blocking dopamine receptors. As a result, it might be associated with a lower risk of worsening motor symptoms, though this will have to be proven in comparative trials. If approved by the FDA, it may provide a much-needed treatment option for people with PDP.
Supporting PDP Patients and Their Families
Whether in the home setting or in a long-term care facility, health care professionals can find it a challenge to care for patients with PDP. However, monitoring for PDP symptoms and earlier recognition of psychotic symptoms will allow for better treatment before the condition worsens and becomes disruptive. Therefore, health care providers and caregivers should be vigilant in looking for symptoms so PDP can be addressed sooner, allowing patients to maintain their daily activities and overall quality of life.
For more information about caring for someone with advanced Parkinson’s disease, visit the CareMAP online resource, created by the National Parkinson Foundation at caremap.parkinson.org.
About the Author: Richard B. Dewey, MD, is a professor of neurology and neurotherapeutics and the director of UT Southwestern Medical Center’s Clinical Center for Movement Disorders. One of his specialties is the medical management of Parkinson’s disease, and he is now leading a major study funded by the NIH to help identify biomarkers for the disease. He can be reached at firstname.lastname@example.org.