The Emotional Impact of Parkinson’s Psychosis
People often have tremors, stammering speech, compromised mobility, and even depression with this neurological disorder. But many experience hallucinations and delusions, too.
When Valentina’s father was first diagnosed with Parkinson’s disease (PD) seven years ago, she and her mother were prepared for some possible physical changes: tremors, rigidity, maybe a shuffled gait. What they weren’t prepared for were psychological changes that would profoundly affect her father several years into his diagnosis, nor the emotional toll it would take on her family.
There were noticeable personality shifts. Valentina’s dad, once the life of the party, is now quiet and anxious in social settings, and will often retire during a gathering and go to sleep. He’s seems to have lost interest in many of the things that used to bring him joy. “I think what makes us all sad is that we could deal with the physical piece of it. But we feel like we’ve lost the man he once was,” she adds.
Valentina’s experience echoes that of so many caregivers and loved ones of people with this condition, a progressive disease that affects the nervous system, causing muscle tremors, slower movements, stiffness, loss of balance, and even speech changes. But what’s fairly common—and less frequently discussed—are the psychological effects PD patients can experience and their loved ones then witness.
“At least 50% of people with Parkinson’s will suffer from either depression, anxiety, and often both at some point,” says Gregory Pontone, M.D., MHS, director of Johns Hopkins Parkinson’s Disease neuropsychiatry clinical program in Baltimore. Other common symptoms are hallucinations and/or delusions, a.k.a., psychosis. According to the Parkinson’s Foundation, between 20% and 40% of PD patients experience hallucinations (seeing or sometimes hearing things that are not truly there) or delusions (having erroneous beliefs without cause).
If you have Parkinson’s disease—or you’re a caregiver to someone who does—such debilitating changes to both body and mind can take an enormous emotional toll on you. Here, top PD experts explain why these symptoms occur, and offer advice to patients and caregivers on better managing—and coping—with PD’s possible neurological fallout.
Handling Hallucinations and Delusional Thinking
Maybe your loved one is suddenly speaking to people who aren’t present. This disturbing development, known as psychosis, can happen for a few reasons: “It may be part of the neurodegenerative process,” explains Dr. Pontone. Or it can be a side effect of PD drugs, most commonly those that work by increasing dopamine. That’s because too much dopamine in the brain helps with motor symptoms but can trigger psychosis. “It’s also possible that a person who has Parkinson’s disease could have another primary reason for psychosis,” he says, such as severe depression, lack of sleep, and even (though rarely) schizophrenia.
In some cases, certain PD drugs actually play a role in the development of psychosis, specifically those that boost dopamine (dopamine agonists) or deplete acetylcholine (anticholinergic). That said, “dopamine medications are not the stand-alone cause, because most patients on medication do not have psychosis,” says Pontone.
When hallucinations are drug-induced, sometimes the medication can be switched to something less likely to cause this troubling side effect. But, more often than not, the original drug is paired with an antipsychotic medication such as Clozapine (clozaril) or Nuplazid (pimavanserin). “In most cases, you don’t want to remove the dopamine drug unless you have no other choice,” explains Dr. Pantone. “Because you’re almost certainly going to compromise their movement.” Modifying the dosage, or the timing, often helps reduce psychosis while still aiding motor symptoms, says Dr. Pontone.
Dealing With Depression and Anxiety
Continual low mood and loss of interest can be a red flag, and not merely for the depression itself. Depression from PD can increase your risk for psychosis. Age, sleep disorders, and cognitive impairment are also considered risk factors.
Still, according to Valentina, if you were to ask her father if he’s depressed, he would give you a resounding no. His family sees signs that suggest otherwise. “He doesn’t want to hear the word depression,” she says. This is why Dr. Pontone requests that caregivers sit in on every single exam.
“What people don’t realize is that depression often lacks a feeling of sadness,” he explains. “A patient will say ‘I’m not sad,” but what they do have is a loss of interest in their usual activity, and the inability to fully enjoy things.” The patient may deny it, but the caregiver can provide the doctor with insights about day-to-day life. “The caregiver may tell me, ‘He just sits on the couch all day and is largely inactive.’ Or, ‘He used to have several hobbies, and now he has none,’” Dr. Pontone explains. When patients are actively having paranoid delusions, however, a private conversation may be the best course to avoid upsetting the patient.
While depression is common in many chronic diseases, research has shown that it’s more common in PD patients, says Guy Schwartz, M.D., co-director of the Stony Brook Parkinson’s & Movement Disorders Center at Stony Brook Medicine in New York. In fact, research shows that rates of depression and anxiety are higher in those with PD than they are with other disabling conditions, including rheumatoid arthritis, diabetes, and multiple sclerosis.
Why? The mechanism isn’t well-understood. One study suggests that those with an onset of PD before the age 50 are at higher risk of depression and anxiety. And research has also shown that increased severity of depression and anxiety correlated with severity of hallucinations. Anecdotally, experts believe those with a history of depression prior to their diagnosis may be more prone to it, as well as those with more severe (physical) disease progression. “In my own experience, the patients [who] we’re successful with treating their physical symptoms have a more positive outlook,” says Dr. Schwartz.
If your physician determines depression and/or anxiety is at play, antidepressants may help. Research has shown that some antidepressants prescribed to the general population also work well for PD, too. For example, Paxil (paroxetine) and Effexor (venlafaxine XR) were shown to be safe for PD patients—and didn’t worsen motor function. “Most antidepressants will help with anxiety, too, but about a third of patients with anxiety may need another medication, either dopamine-based or a neurochemical substrate,” says Dr. Pontone.
Bottom line: You have to speak up. Medication can improve quality of life, but Dr. Pontone stresses that doctors can’t treat a problem if they don’t know it exists. Research has shown that only 20% of PD patients with depression receive treatment for it.
Caring for the Caregiver
While these symptoms can be confusing and upsetting when you’re the patient, they can be traumatic and overwhelming for caregivers to witness and manage. “We see accelerated caregiver burnout when the patient has psychosis,” says Dr. Schwartz. One study published in Translational Neurodegenerational found that caregivers’ feeling of burden increased as the patients cognitive status declined.
“It’s very difficult when you see your spouse’s personality changing and feel like you’re slowly losing the person you’ve known for decades,” he says. If you’re starting to notice symptoms in your loved one, the first step is a neurological consultation to see if there are medication strategies that may help with symptoms.
During an episode of psychosis, it’s best to reassure you’re loved one—but not try to convince them that what they’re seeing isn’t true. “Their hallucinations and false beliefs—their psychosis—appears very real to them, and you can’t talk them out it,” says Dr. Schwartz. That’s often when tension or anger occur. Instead, be reassuring and comforting. Then redirect his or her attention to something else. For example, Dr. Pontone has a patient who continually sees teenagers in the house and tells his wife to ask them to leave. In this and similar nonthreatening cases, the doctor’s advice is not to argue whether or not false visions are real. Instead, turn to a distracting activity or task.
Providing structure may help, too. “We’ve actually found that hallucinations are much more likely in individuals who are unstimulated,” says Dr. Pontone. In other words: The more bored they are, the more likely they are to have them. Structure, routine, and keeping the house well-lit, especially in the evening hours, helps keep your loved one active.
To manage the emotional impact of PD, caregivers should consider joining a group. “We as physicians can help, but we’re not living with it, and we’re often not caregivers of someone who is living with it. My patients and their caregivers find it very helpful to speak with other families that have the same problems,” says Dr. Schwartz. Check with your local hospital, large medical centers, or organizations such as the Parkinson’s Foundation, which supports education and research, but also provides a community for patients and their family members.
What’s been helpful for Valentina and her family is to not only meet each other and their father with compassion, but to practice acceptance. “We have to accept that he’s different. We love him the same, but he’s different,” she says. “I feel like that helps, because then you don’t expect as much.”
Last names omitted to protect patient privacy.
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