Caregiving Tips for Parkinson’s disease Psychosis Patient

Parkinson’s disease psychosis can develop in over 50 percent of patients over the lifetime course of living with Parkinson’s disease and is characterized by hallucinations and delusions. The diagnosis is challenging for both patients and their caregivers, particularly if they don’t know that these non-motor symptoms can be associated with Parkinson’s disease. Caregiving Tips for Parkinson’s disease Psychosis Patient
Understanding Hallucinations and Delusions
Hallucinations are false perceptions. A patient will see or hear or even feel something that really isn’t there. Delusions are irrational beliefs and patients cannot be convinced that their understanding is flawed.
Common characteristics of Parkinson’s disease psychosis include, typically, visual hallucinations, usually little children or little animals in the bedroom at night or even just outside the home, which bother the patients because they don’t belong there. They also have paranoia. Often times it’s paranoia of spousal infidelity where they believe the spouse is cheating on them or stealing from them.
At first, most patients may understand that what there are seeing or feeling isn’t real, but if the hallucinations and delusions are not treated promptly, they tend to increase in frequency and become much more bothersome, believable, and even frightening. When people living with Parkinson’s disease psychosis become more insistent and bothered about the hallucinations and delusions, this is the point where caregivers find themselves struggling to help their loved one and feeling overwhelmed themselves.
Caring for the Patient and Caring for the Caregiver
Caregivers often 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.
With Parkinson’s disease psychosis, we clearly recognize that patients have a burden when they are experiencing Parkinson’s disease psychosis, but the other side of that are the family members and caregivers. There is a large caregiver burden placed on people that are taking care of these patients. Because of disabilities associated with Parkinson’s disease, caregivers are often taking care of meals, bathing, and dressing these patients. When there’s the extra component of a psychosis and patients are accusing them of stealing from them or cheating on them, it becomes emotionally burdensome and very overwhelming.
To help manage the stress of caring for someone who is experiencing hallucinations and delusions, it is important for caregivers to seek out support from their personal network of family and friends, and consider finding Parkinson’s support groups in their area. The unfortunate reality is that the oftentimes the burden of managing someone with hallucinations and delusions becomes too great, and caregivers often make the difficult decision to transfer their loved one to a long term care facility, unless their symptoms are controlled by treatment.
Can Parkinson’s disease psychosis be treated?
If the hallucinations and delusions are infrequent, they may not require treatment beyond monitoring.
However, if they trouble the patient (and caregivers), the doctor may first try to reduce the Parkinson’s medications that address motor control to see if this alleviates symptoms. Although, a physician could prescribe an atypical antipsychotic these drugs are not approved by the Food and Drug Administration (FDA) for Parkinson’s disease psychosis, which means neither the safety or efficacy have been scientifically established for the psychotic symptoms of Parkinson’s Disease.
There is good news for patients and their families. The only treatment for Parkinson’s disease psychosis was just approved in late April 2016 by the U.S. Food and Drug Administration. Pimavanserin, to be called NUPLAZID, is approved for the treatment of hallucinations and delusions associated with Parkinson’s disease psychosis. Published data shows that the medicine reduces hallucinations and delusions, without worsening motor symptoms, which is important when managing Parkinson’s patients.
By: Dr. David Kreitzman, M.D., Director, Parkinson’s Disease & Movement Disorders Center of Long Island Director, Parkinson’s Disease Specialty Care Center, St. Charles Hospital