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Posted: June 30, 2009

When Parkinson's is Mistaken for Dementia

Caregiving and Parkinson's Psychosis

It affects more than one of every three Parkinson’s disease patients and is a devastating, life altering condition that is equally tragic to patient and caregiver. But, sadly, too few people even know that Parkinson’s Psychosis exists.

The condition is hauntingly characterized by visual hallucinations, delusions, and feelings of paranoia – and it is often misdiagnosed as Alzheimer’s disease or dementia. Of the 1.5 million Americans living with Parkinson’s today, only about 40% of their caregivers say they are aware of this condition.

According to The National Parkinson’s Foundation, 60,000 new cases of Parkinson’s disease are diagnosed every year. An average of 40% of these patients – about 24,000 – are suffering from Parkinson’s Psychosis and don’t know it. Though it can occur at any stage of the disease, it is especially prevalent, as high as 60%, for those in the later stages who have been chronically treated with anti-Parkinson’s medications.

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Because it is commonly confused with and misdiagnosed as Alzheimer’s or dementia, most caregivers interpret the behavioral changes in their loved one as a sign of aging and disease. They don’t try to fix what they assume is an inevitable progression. In many cases, caregivers may not even address the condition with the patient’s physician. And so, without knowing the true cause, family take on an increasingly overwhelming caregiving burden as their loved ones lose their ability to complete normal daily tasks, becoming less self-sufficient.

Carol McClain, of Cincinnati, knows well the challenges of each stage of Parkinson’s disease, but especially those final years of her husband’s life when he developed Parkinson’s Psychosis. At first diagnosis, Carol, a registered nurse with a master’s degree in counseling and rehabilitation, and her husband, a prestigious physician, read all of the literature available to prepare for what was coming. However, they were not prepared for the severe psychological problems that her husband developed later on with the psychosis. The physicians did not discuss this possibility, despite the high incidence, she says.

While discussing concern over her husband’s symptoms with the physician, Carol now says, “I became extremely angry, and he would look at me like I was the only person he’d ever heard this from.” That was 12 years ago, but it is still happening today.

“People are so afraid of physicians,” Carol says. “You need to say, ‘Listen to me -- this is what’s going on.’” She believes medical professionals don’t want to upset people, especially in a condition they can’t do anything about.

Knowledge is the most critical part of any caregiver’s job, and it’s especially true for those who care for Parkinson’s Psychosis patients. Because there isn’t a lot of information available and many doctors are not talking about it, it’s the most proactive thing a Parkinson’s caregiver can do. But if you suspect something abnormal is happening, don’t ignore it. The internet is a great place to begin. Search Parkinson’s disease sites specifically for Parkinson’s Psychosis and go to chat rooms and online support groups for help and with questions. Some sites even have an Ask the Doctor section. Use it.

But don’t stop there; visit the physician. “Screening for and treating psychosis in PD is important, as psychotic symptoms are associated with worse outcomes for patients and significant distress for caregivers,” according to Dr. Daniel Weintraub and Dr. Howard I. Hurtig, reporting in the October 2007 American Journal of Psychiatry. Screening can be done quickly in a routine clinic visit by asking about the patient’s behavioral changes, especially the types of hallucinations that may occur.

The physician needs to rule out any other medical conditions, as well as evaluate how Parkinson’s medications may contribute to the symptoms. It may also be necessary to simplify the treatment regimen, eliminating or prescribing lower doses of those medicines that could worsen thinking difficulties. Says Dr. Hubert Fernandez of the National Parkinson Foundation, “While minimizing medications can make hallucinations better, it often worsens the Parkinsonian symptoms. So simplification is the key.” Patients already suffering from dementia may be especially prone to confusion and hallucinations as side effects of some of the medications used to treat PD.

This worked for Jeannine Madden in Kentucky whose husband “accused me of having an affair with someone who was frequently in our house, of belonging to an organization that was spying on us, and much more. It got to the point where I was afraid to take him anywhere, as I never knew what might set him off.” When his medications were cut back, and some were eliminated altogether, the hallucinations mostly went away, though they still occasionally show up.

Yet, Jeannine reflects, “Unfortunately, having reduced his Parkinson's meds has had a severe impact on his mobility, but I guess I had to choose mind over body.”

The treatment of Parkinson’s Psychosis is challenging because medications that manage motor symptoms typically worsen psychosis, and treating psychosis with antipsychotic medications can worsen Parkinsonism. Though adjusting medications can and often does improve psychosis, the cause of the condition is not yet fully understood. Research shows a connection between exposure to medications, but a more complex interaction of causes that involves more brain involvement is likely. Because the progression of the disease is not well understood, there is little evidence to guide doctors in treatment.

“I wish I had been told that this was happening,” Carol says of her dizzying journey through the psychosis with her husband. Parkinson’s Psychosis caregivers need affirmation that they are not crazy. Carol suggests caregivers keep a log with signs of their loved one’s behaviors, which will be subtle at first. Take the list to the doctor and tell him, “This is what I’m seeing, what do you think?”

To spare the patient the embarrassment of this discussion, caregivers can write observations in the form of a short and direct cover letter given to the nurse prior to the exam. Keeping an open dialogue with the doctor is helpful to your loved one because optimal care depends on it. This link is helpful to caregivers because it helps them accept the condition. Carol says acceptance is “one of the most important things a caregiver can do.”

Taking care of oneself without guilt is another critical caregiver role. “Unless you have been a caregiver, you can never know just how hard it is. I was a nurse and I didn't realize what these caregivers were experiencing. Family doesn't understand, nor do the physicians. There is no way to describe the utter fatigue you experience.” Make the effort to be social whether it’s lunch with friends or joining a support group. Even when you get to the point where the computer is your only form of contact, it’s vital to reach out, vent, and know that you are not alone.

There is no cure for Parkinson’s Psychosis, but there is hope. As caregivers, keeping up on new information, studies, and trials gives hope. Know that medical experts are striving for better treatment and care for those suffering from Parkinson’s and its devastating psychosis, and that research is ongoing.


Lori Zanteson is a California-based freelance writer. She specializes in topics related to families and can be reached at


National Parkinson Foundation, at

Parkinson’s Disease Foundation, at

Parkinson’s Disease Caregiver Information, at

Caregivers of People with Parkinson’s, at

Parkinson’s Psychosis Clinical Drug Trial, at

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