If you are the caregiver of someone with Parkinson’s disease (PD), a progressive neurodegenerative movement disorder that affects approximately one million Americans, then by now you are very familiar with the tell-tale motor signs of the disease, which include tremors, rigidity and slowness of movement. However, you may be surprised to learn that people living with Parkinson’s can also develop non-motor symptoms (those unrelated to physical movement) as they age and as the disease progresses. These symptoms should not be overlooked because they can, and must, be treated.
Parkinson’s disease psychosis (PDP) is a particularly under-recognized non-motor disorder of perception and thought, which emerge as Parkinson’s Disease advances. It is a serious clinical complication which affects more than half of patients over the course of their illness.
What is Parkinson’s disease Psychosis?
PDP is characterized primarily by hallucinations (seeing, hearing or smelling things that aren’t really there), as well as delusions (false, irrational beliefs). Understandably, these symptoms impair the quality of life for the person experiencing them, and for the family and/or care-giver.
Unfortunately, many patients will go undiagnosed if their physician doesn’t ask specifically about whether the psychotic symptoms are occurring especially if the patients and their families don’t volunteer such information to the treating physician. In fact, only a small portion (10-20 %) of Parkinson’s patients actually report PDP symptoms to their doctor. This may be due to fear or embarrassment. In other cases, PDP goes undiagnosed because patients and their caregivers may not realize that psychotic symptoms are actually associated with Parkinson’s disease.
These unreported symptoms lead to a clinician having an incomplete understanding of how the disease is affecting his or her patient and may lead to lack of treatment. In older persons, several factors can trigger psychotic symptoms such as infections, typically urinary tract or upper respiratory infection or pneumonia, and certain medications. When infections have been ruled out and no newly added medication has been identified as causing the psychosis, then the most likely culprits are the Parkinson’s medications used to treat the motor symptoms. However, there is also some evidence that psychosis might be a spontaneously occurring complication as the brain disease progresses.
Understanding Hallucinations and Delusions
Hallucinations are false perceptions, or the inability to separate reality from imagination. The type and severity of hallucinations can vary patient to patient, but most commonly are visual. For example, many patients reporting seeing a fleeting image out of the corner of the eye that is not there, or they may see groups of people or animals. 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 then find they suddenly disappear.
While hallucinations start as mild and may even be “entertaining” to the patient, as they become more frequent and intense, they can also become quite disturbing and bothersome, and the patients’ behavior will change. For example, a person with PDP may refuse to sit in his or her favorite chair because a “creature” or another person is seemingly there already. While this may sound like a mild inconvenience, patients who goes to greater and greater lengths to avoid what they see will suffer a tangible decline in their quality of life.
Auditory hallucinations (hearing things that are not there), tactile hallucinations (e.g., feeling abnormal sensations on the skin), olfactory hallucinations (e.g., smelling things that others don’t) and gustatory hallucinations (tastes without a stimulus) also occur but at a lower frequency.
Delusions are usually paranoid in nature. For example, a patient might think that someone (often a spouse) is stealing their belongings or trying to access their bank account illegally. Or, a husband may be irrationally convinced that his wife is cheating on him after 45 years of marriage.
Taking Care of the Patient While Taking Care of Yourself
PDP is difficult for both patients and their caregivers, particularly because it is often impossible to convince people experiencing delusions that their beliefs are false or irrational. Caregivers may find they are giving up time with friends and family, their hobbies, and even their jobs because keeping their loved one content and safe becomes an overriding priority and time-consuming. To help manage the stress of caring for the PDP patient, it is important for caregivers to seek out support from their personal network and to find Parkinson’s support groups in their area. The unfortunate reality is that the oftentimes the burden of managing someone with PDP becomes too great, and caregivers often make the difficult decision to transfer their loved one to a long term care situation, unless their symptoms are controlled by treatment.
Hallucinations usually require treatment but sometimes may not require treatment if the symptoms are very mild and not bothersome to the patient. However, they should be monitored and taken into account when treating Parkinson’s, generally. When the psychotic symptoms require treatment, the doctor’s first option is to reduce the Parkinson’s medications, and when these cannot be further reduced, the physician may prescribe an atypical antipsychotic such as quetiapine or clozapine, but these drugs have side effects that be intolerable or unsafe for some patients. Further, these antipsychotic drugs are not approved by the Food and Drug Administration (FDA) for PDP, which means neither their safety or efficacy have been scientifically established for the psychotic symptoms of Parkinson’s Disease.
There is good news for patients and their families. A new treatment for PDP may soon be available. Pimavanserin is an investigational chemical entity that has completed Phase III clinical studies. Published data report that this new medication helps to diminish the impact of PDP symptoms and may have a lower risk of worsening motor symptoms, though this will have to be demonstrated in further clinical trials.
You Are Not Alone
If you are caring for someone with PDP, please know that you and your loved one are not alone. Open dialogue with a physician can help in developing an effective management plan. 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. (photo credit CareMap)
Dr. Henry Nasrallah