Over 1 million Americans are living with Parkinson’s disease (PD). Although typically thought of as a neurological disorder affecting movement with characteristic tremor, slowness, stiffness, and walking difficulty, many patients are also troubled by other, nonmotor symptoms. These commonly include memory impairment, psychosis, depression, vivid dreams, constipation, and orthostatic hypotension.

 

Parkinson’s Disease Psychosis (PDP) is particularly troubling, as it is a major risk factor for increased mortality and for long term care placement. In fact, the single most important precipitant for placement of PD patients in a long term care facility is psychiatric dysfunction, particularly psychosis, and once placed in a nursing home for PDP, patients are likely to remain there permanently.

Over the past several years there has been a shift in thinking about the underlying cause of PDP. Rather than merely recognizing PDP as a side effect of medications used to treat PD, more recently it has become apparent that PDP is really part of the underlying disease process of PD. Approximately 50 percent of patients with PD will develop PDP during the decades-long course of their disease, yet many caregivers and providers are surprised by the onset of psychotic symptoms.

These symptoms may initially be mild, but tend to gradually increase in frequency and severity.

Typical symptoms may include visual hallucinations (for example, seeing children or visitors at dinner), delusions (spousal infidelity, stealing money), and paranoia (being watched).

Few patients will spontaneously report their psychosis symptoms. It is therefore sometimes difficult to get an accurate patient history. Specific questioning about psychosis symptoms of hallucinations, paranoia, and delusions is often needed to identify PDP. Often, patients and caregivers will not associate pyschosis symptoms with PD.

Many patients are much more troubled by PDP than physicians may recognize in the clinical setting. The hallucinations, delusions, and paranoia associated with PDP impact a patient’s general emotional state and relationships with family and caregivers and also limit their participation in daily activities.

The stigma that many patients and families attach to the presence of these delusions, paranoia, and hallucinations makes them less likely to talk about PDP or to make use of supportive services. They may not view PDP as part of the progression of PD itself, but rather (incorrectly) as the emergence of an end stage of the disease.

Also, as patients and their families research PDP, they may learn that untreated PDP often leads to placement in a long term care facility. This can also make it difficult to try to get an accurate history because the patient or caregiver will not want to highlight symptoms that may hasten facility placement.

Given this, there is a need for health care professionals across the long term care facility to understand how these types of symptoms, particularly hallucinations and delusions, present in PD patients. Of note, these patients are different than those who may have other psychiatric or neurologic disorders, such as dementia or schizophrenia.

Patients may be embarrassed or reluctant to admit that they are experiencing hallucinations or delusions, or may attribute them to poor vision.

Caregivers may not be aware that psychosis has emerged until it becomes disruptive to daily life.

Visual hallucinations are the most common psychotic symptoms of PDP and often consist of nonthreatening figures of familiar people and/or animals. For example, often patients report that they see a group of people in a room talking, but when the patient tries to engage them, they are ignored. The patient may try several times to engage, but eventually gives up. The hallucination isn’t usually harmful or scary, but it is disturbing, nonetheless. The same visual hallucination tends to reappear at regular times during the day.

Although visual hallucinations are most common, other hallucinations can occur, including auditory hallucinations (such as hearing voices in the hallway); tactile hallucinations (like a sensation on the skin); or, more rarely, taste hallucinations.

PDP patients may also experience delusions. A common delusion is when a patient inexplicably believes that his or her spouse is committing adultery, even when there is no evidence to support this thinking. Unfortunately, as PD progresses and the psychosis worsens, the delusions tend to become more bothersome, at times threatening and debilitating, for patients and their families. For example, many delusional patients become convinced that their loved ones are in physical danger or under assault and may even take action, such as calling police for help.

When caring for patients with PD, especially as the disease advances, it is important to keep in mind that PDP is common yet under-recognized. Often patients or their caregivers may not bring these symptoms up, especially when they are not bothersome. While patients may not initially be troubled by PDP symptoms, it is not normal to see things that are not there or believe things that are not real. Since undetected PDP will usually progress, it is important to ask specific questions about psychosis symptoms so PDP can be diagnosed and treated before symptoms worsen.

While all patients with PD can develop PDP as their disease progresses, patients are at an increased risk for PDP as they age, develop memory impairment or depression, or if they act out vivid dreams. Psychotic symptoms may also be brought out by infections, especially urinary tract infections, and by medications used to treat PD or other disorders (such as narcotics or bladder medications).

Earlier recognition of the emergence of PDP in patients with PD is needed. Patients and caregivers should not let the stigma of psychosis, fear of long term care placement, or tolerance of mild symptoms delay recognition. Practitioners should be vigilant about the rather common emergence of PDP symptoms, querying patients and their caregivers regularly. Providers and administrators in the long term care setting should be aware that PDP patients and their caregivers have usually reached their breaking point in terms of their ability to cope at home with the persistent hallucinations and delusions of PDP. As family and caregivers begin to feel overwhelmed, the decision to seek long term care placement is often made.

The long term care facility can be challenged to care for a patient with PDP. However, monitoring for PDP symptoms and earlier recognition of PDP symptoms will allow PDP to be treated before it worsens and becomes disruptive.

Treatment includes evaluation of medical causes (including medications and underlying infections), reduction of PD medications (unless motor function and balance worsen), and consideration of an antipsychotic medication that does not worsen PD motor symptoms.

Although initially psychotic symptoms in PD may be considered mild, it is typically progressive over time.

As PDP progresses, hallucinatory activity tends to increase, delusions become more prominent, and symptoms generally become more troubling and disabling. Health care providers and caregivers should thus continue to be vigilant in their detection of symptoms so PDP can be addressed earlier to maintain daily activities and overall quality of life.