A Caregiver's Intro to Parkinson's Psychosis


Shaky hands, an unsteady walk, limbs that unexpectedly freeze in place; these symptoms are practically synonymous with Parkinson's disease (PD). It is a devastating and complex disease that interferes with movement. As it progresses, it produces a wide range of other problems. The neurological condition also has a lesser known (but no less challenging) symptom called Parkinson's disease Psychosis.

"Parkinson's disease psychosis is a common and very disabling non-motor feature of this disease, and patients have a substantial risk of eventually having this problem," says Richard B. Dewey Jr., MD, professor of Neurology and Neurotherapeutics and Director of the Clinical Center for Movement Disorders at the University of Texas Southwestern Medical Center.

Indeed, 50 percent of people with PD will experience an episode of psychosis, usually in the form of a visual hallucination, at least once during the course of their disease.

What happens in the body and the brain that causes this debilitating condition?

Causes and Symptoms

Researchers do not know precisely what causes the psychosis to occur, but there are certain risk factors that can play a role: the person's age, how long they have had PD, how severe their other symptoms are, and whether they are on medications that increase levels of dopamine in the brain.

Many of the prescriptions used to treat the motor symptoms of PD do so by upping the amount of dopamine in the brain. However, elevated dopamine levels can set off episodes of psychosis.

A psychotic episode typically involves seeing people and objects that are not really there (visual), hearing noises that don't exist (auditory) and delusions (inaccurate beliefs that the affected person nonetheless believes to be true). The delusions typically take the form of paranoid thoughts such as believing a family member or friend has poisoned their food or that their spouse is cheating on them.

During the later stages, these incidents of psychosis may cause the patient to become more confused and have an impaired reality such as an inability to distinguish personal experiences from the reality of the outside world. Typically, it does not develop until several years after diagnosis, but keep in mind that there are other similar conditions that may cause a misdiagnosis. PD psychosis symptoms can be extremely disturbing to the patient, family and their caregiver and they can create a challenging situation for all who are involved in providing care.

Treatment Options

Treating psychosis is truly a challenge. There are currently no FDA-approved therapy options available to manage the condition, and only a fraction ( about 10-20 percent) of people with PD psychosis actually inform their doctor of their symptoms. Dewey speculates that stigma and fear of embarrassment prevent many people from seeking help.

A physician will first try to determine whether there is an underlying illness (i.e. an infection) that could be causing a person with the disease to experience psychotic symptoms. Treating the underlying cause (if there is one) is one of the simplest ways of decreasing psychotic episodes.

When there is no identifiable outside source of psychosis, doctors often turn their attention to the medications that the person is taking. Gradually decreasing the dosage of dopamine-enhancing medication is possible and may reduce psychosis, but the obvious trade-off is that the person's motor symptoms are likely to worsen at a more rapid rate. The ongoing balance of benefits verses risk is a challenge and is not limited to this disease.

Another medicinal option for managing the symptoms of PD psychosis is the use of atypical antipsychotics such as quetiapine (Seroquel) and clozapine (Clozaril). However, these medications may also make motor symptoms worse. A newer drug, pimavanserin, has been developed specifically for psychosis in PD patients and is waiting FDA approval. This medication takes a different approach by targeting serotonin receptors and may alleviate these incidents without affecting the patient's motor performance. Medical research produces discoveries continually, so keeping close consult with the patient’s doctor should continually be a priority. Finding the best balance of treatment is crucial for optimum care.

Potential Triggers

This type and other psychotic phenomena have many possible triggers. A few obvious ones are sleep deprivation, metabolic or electrolyte imbalances, medications, and infections. Overall susceptibility is strongly associated with the patient’s mental status. These episodes are more likely to appear in situations during the evening (dusk) where there is little background stimulation or when the patient is alone in a quiet room.

Medications often are a culprit as well, since many prescribed for PD increase levels of dopamine in the brain. PD involves a malfunction and loss of neurons that produce dopamine, a neurotransmitter which functions in relaying messages to the brain that control movement and coordination. Dopamine also plays a pivotal role. The disease itself progresses and can impair cognition and visual processing, which leads to dementia.

Patients who are not receiving medication to palliate their motor symptoms seldom have psychotic experiences.

What Caregivers Can Do

Caregivers of people with PD and other neurological conditions that cause hallucinations and delusions engage in a variety of behavioral interventions to keep their loved ones calm and in control during a psychotic event.

Unfortunately, "In general, these efforts are unsuccessful," according to Dewey, who says it is vital to notify their loved one's doctor at the first sign of psychostic symptoms to avoid unnecessary disability, stress and nursing home placement.

It is important to maintain an honest relationship with your loved one, asking often about abnormal ideas and experiences. Family members are usually surprised to learn that their loved one experiences these incidences, because many patients with PD are reluctant to divulge this information unless specifically asked. It is also important to stay vigilant in observing signs of impulse control disorders, such as excessive gambling, abnormal sexual interests, excess spending behaviors, etc. These behaviors generally go undetected unless the caregiver knows what to look for, or the physician begins asking specifically. Psychosis and impulse control disorders are common complications of dopaminergic therapies that can have serious consequences if left undiagnosed or untreated.

Remember that not all incidences evolve into severe hallucinations or delusions. If the patient is doing well otherwise, exercise caution is any dosages are increased or new medications added. A basic change in medication or dosage by their physician may eliminate the issue.

There are many daily activities and therapies that should be included in the regular routines of a loved one with PD. Proper diet, exercise as much as possible even with limitations, and keeping an open communication platform with family and physicians are all crucial in maintaining the quality of life for your loved one. Be diligent about the safety of their environment and encourage interactivity and outings, and explore various movement and creative therapies. Keeping your loved one active is a key factor in their overall quality of life.

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This was a great article. My mother in particular had had recent extreme paranoia. It's complicated but she had brain trauma incident in1976. Since then it's been a slow progression. She has had numerous recent falls in ALF. Lives with dad but he is showing signs of Parkinson's. This article was helpful.
Luckily, I read info at the Michael J Fox foundation. They announced a new drug for Parkinson's hallucinations. I had the neurologist prescribe it for my husband.

My husband's attacks were severe and happening every night. He was scared out of his mind of these awful people who came to visit him nightly and during the day too.

The drug worked. It's about 90% effective. He still sees people but they aren't mean or threatening to him any longer. It's called Nuplazid. What a life saver.