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Parkinson's Disease Psychosis: Symptoms, Management, and Economic Burden
Neal Hermanowicz, MD, and Kari Edwards, PhD

Parkinson's Disease Psychosis: Symptoms, Management, and Economic Burden

Neal Hermanowicz, MD, and Kari Edwards, PhD
Parkinson’s disease psychosis (PDP) is a costly, debilitating condition that generally develops several years after diagnosis of Parkinson’s disease (PD). PD is the second-most common neurodegenerative disease, and it imposes a significant burden on the healthcare system. Non-motor symptoms commonly manifest in PD, contributing to the severity of a patient’s disability. The neuropsychiatric symptoms that are common in PD can be a significant source of distress to patients and caregivers. Recent studies have shown that more than 50% of patients with PD will develop psychosis at some time over the course of the disease. The responsibility for caring for a person with PDP frequently falls on family members. Caregiver distress is frequently predicted when patients with PD have symptoms of psychosis. Hallucinations and delusions are independent predictors of nursing home placement for patients with PDP. The authors sought to examine total healthcare expenditures among patients with PDP compared with patients with PD without psychosis. All costs were higher for patients with PDP than for those with PD without psychosis and all-Medicare cohorts, with the highest cost differentials found in long-term care costs ($31,178 for PDP vs $14,461 for PD without psychosis), skilled nursing facility costs ($6601 for PDP vs $2067 for PD without psychosis), and inpatient costs ($10,125 for PDP vs $6024 for PD without psychosis). Patients with PDP spent an average of 179 days in long-term care, compared with 83 days for patients with PD without psychosis. As expected, long-term care utilization and expenditures were significantly higher for patients with PDP than for patients with PD without psychosis. Reducing long-term care utilization by patients with PDP may significantly lower the overall economic burden associated with PDP.

Am J Manag Care. 2015;21:S199-S206
Parkinson’s disease psychosis (PDP) is a devastating neuropsychiatric condition that afflicts many patients with Parkinson’s disease (PD) over the course of their lives. Although the spotlight traditionally has been on the motor symptoms associated with PD, in the last decade there has been increasing recognition that this focus is overly narrow. Non-motor symptoms, such as psychosis, can be just as debilitating to patients and distressing to caregivers as the motor symptoms, and sometimes more so. Notably, because of the dearth of effective and safe treatment options, patients with PDP are subject to considerable emotional distress and increased risk for admission to nursing homes. With the changing demographics in the United States anticipated over the next few decades, direct and indirect costs associated with PDP will escalate. This paper seeks to highlight the need for increased awareness of PDP; its relationship to health outcomes, disability, and healthcare expenditures; and the need for new treatments in this underserved population. The larger context in which these issues are discussed has bearing on efforts to improve the care of patients with PD and manage associated healthcare resources prudently.

PD Imposes a Significant Burden on the Healthcare System
PD is the second-most common neurodegenerative disease; the first is Alzheimer’s disease.1 Although PD is often regarded as a disease of the elderly, the mean age of diagnosis of PD is 60 years, with approximately 5% to 10% of cases identified in patients aged 20 to 50 years.1,2 The risk for being diagnosed with PD increases with advancing age.1 In the United States alone, PD affects 1 million patients who, by virtue of their diagnosis, are at an almost 4 times greater 6-year risk of death than counterparts matched by age, sex, and race.1,3 As the mature population in the United States continues to increase, it is anticipated that the number of individuals with PD will almost double by 2030.4

The economic burden associated with PD was estimated at $14.4 billion in 2010—$8 billion higher than would be expected for a similar patient population without PD.4 Patients with PD experience increasing symptom severity as their disease progresses, which leads to an escalation in direct costs for pharmaceuticals, hospitalizations, and nursing home care over the life of a patient.4,5 Approximately 15% of patients with PD are in nursing homes, amounting to almost 60% of the direct costs associated with the management of PD (Figure 1).4 Indirect costs, with lost productivity as a major contributor, are also extremely high, at $6.3 billion.4

The economic burden associated with PD is expected to increase markedly over the next several decades as baby boomers age.4 Forecasts of increasing numbers of patients and the associated economic impact underscore the need for medical innovations that will help prevent, delay, or alleviate the symptoms associated with PD.

The financial burden of Parkinson’s disease, along with several other chronic conditions, is projected to increase dramatically over the next several decades as the size of the elderly population grows. Such forecasts underscore the need for medical innovations that will help prevent, delay onset of, or alleviate symptoms of this devastating disease.

PD Is More Than a Movement Disorder
Motor symptoms—namely tremor, rigidity, bradykinesia, postural instability, and gait impairment—are the cardinal features of PD and historically have been the primary focus of pharmacologic interventions.1 Nonmotor symptoms, while long recognized as prominent in PD, have received increased attention in recent years.6

Non-motor symptoms commonly manifest in PD and contribute to the severity of a patient’s disability.7 A survey of 99 patients with PD, using validated questionnaires to assess the presence of non-motor symptoms such as anxiety, depression, sensory disturbance, fatigue, and sleep problems, revealed that 88% of patients had at least 1 such symptom.8 In a study of patients with PD in neurology clinics that utilized a range of validated clinometric scales to assess both motor and non-motor symptoms, a mean of 11 of 30 nonmotor symptoms were reported per patient with PD. In this study, psychosis was one of the non-motor symptoms that correlated with health-related quality-of-life worsening (r = 0.55, P <.0001).9 The prevalence of non-motor symptoms in this study was similar to that reported in other studies with heterogeneous patient samples.10,11

Neuropsychiatric Symptoms in PD
In his original characterization of the disease, James Parkinson noted that the senses and intellect were undamaged in patients with what we now refer to as the disease that bears his name.12 However, it has become increasingly clear that this observation was incorrect. Neuropsychiatric symptoms are common in Parkinson’s disease and can be a significant source of distress to patients and caregivers. In fact, several reports indicate that neuropsychiatric symptoms can often be even more distressing and disruptive than the primary motor symptoms.13-15 Dementia, depression, and psychosis, in particular, impact the quality of life of patients and caregivers, and substantially add to the risk of needing long-term care.9,15


At the age of 78 years, Mrs D had been living with Parkinson’s disease for more than 15 years. Although she required assistance for all basic daily activities—dressing, cutting her food, bathing, and using the toilet—she remained at home, with her husband of 56 years as her sole caregiver.

Mrs D had long experienced hallucinations, both visual and auditory, with the latter initially consisting of hearing music from a radio. The music was distracting but not upsetting; however, more recently, her auditory hallucinations had changed. Instead of hearing music, she now heard the voice of their son calling for her, asking for her help. Her son had died from cancer 2 years earlier, and hearing his voice and his call for help reignited her grief over his loss.

Mrs D now also had the delusional idea that her husband had a girlfriend who was living hidden in their home. She had never seen the girlfriend but nonetheless believed she was present, and thought she heard the girlfriend complaining to Mr D that he spent too much time caring for his wife and not enough time with her—a belief Mrs D communicated to her husband.

Mr D, a man dedicated for years to the care and comfort of his wife, was understandably devastated by the accusation. “All I do all day and every day is care for my wife,” he said with sad exasperation. “When would I even have time for a girlfriend?”

—Neal Hermanowicz, MD, UC Irvine Medical Center

Characterization and Clinical Features of PDP

PDP involves an array of neuropsychiatric symptoms that are well characterized clinically and temporally, particularly with respect to hallucinations and delusions.16,17 The clinical profile of PDP is distinct from that associated with substance-induced psychosis and other psychotic disorders.16,18 Current literature suggests that symptoms of psychosis generally arise later in the course of disease, about 10 years or more after initial diagnosis of PD17; however, a recent survey of physicians found that the length of time between PD diagnosis and PDP presentation was less than 4 years in almost 60% of patients.19 Typically, as symptoms of psychosis begin to emerge, a patient maintains clear sensorium and retained insight.17 Over time, symptoms become more severe and insight may become degraded or lost altogether.20

Visual hallucinations and false, idiosyncratic beliefs maintained despite evidence to the contrary occur with variable frequency and duration from one patient to another, as well as within a particular patient. Although these symptoms may occur at any time of day, they are more likely to occur in the evening and under conditions of dim lighting.21 Auditory, olfactory, gustatory, and tactile hallucinations also may occur in patients, although they are less common than visual hallucinations.17,22

Visual hallucinations may be simple and involve a mundane experience such as seeing ants on the floor. More common early in the disease, such simple hallucinations may not be especially disturbing and may, in some instances, be reported as interesting or even entertaining by patients. Because these types of hallucinations are not disruptive, patients may not be as likely to spontaneously report their occurrence to caregivers or physicians. Over time, and with the progression of disease, the benign quality tends to diminish and the hallucinations can become alarming and disruptive. Patients may call 911 to report intruders in their home, or even flee their home to escape perceived danger.

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