‘Demoralization syndrome’ often follows Parkinson’s diagnosis

Dear Doctor: My husband was diagnosed with Parkinson’s disease last year. One of the biggest challenges for our family has been how depressed he became. The antidepressants he takes don’t seem to help at all, and my daughter says that’s because he’s actually demoralized, not depressed. What does this mean?

Dear Reader: We’re very sorry to learn of the challenges your husband and your family are facing. As any of us who have had an illness knows, even when it’s something as minor as a bad cold, the entire family is affected. And with a diagnosis like your husband’s, the effect is greatly magnified.

The tendency in the past regarding Parkinson’s disease had been a focus on the physical manifestations of the condition, such as tremors and stiffness, which are plainly visible. More recently, there has emerged a growing awareness that anxiety and depression are as much a part of the primary disease process as the motor disorders themselves. And now, according to research recently published in the journal Neurology, the diagnosis of depression in some Parkinson’s patients may be incomplete or even incorrect. Instead, they may be dealing with something known as demoralization syndrome. That is, they are overwhelmed by and unable to cope with the physical changes and challenges presented by the disease.

Although individuals who are depressed and demoralized may exhibit similar symptoms, the avenues of treatment for the two conditions are different. Whereas treatment for depression often includes drug therapy, when it comes to demoralization syndrome, behavioral and cognitive interventions are often effective. It’s also important to note that when it comes to being demoralized or depressed, it’s not always an either/or situation. A patient can certainly experience both. But according to the study, demoralization is not a symptom of depression. It’s a category of its own that is best addressed separately.

Someone with demoralization syndrome feels hopeless. The world that they knew and the things that they loved suddenly seem far away. There are activities they may no longer be able to take part in, interests that shrink in importance in light of the diagnosis, and interactions with family members where the balance of power has shifted dramatically. They are suddenly not the people they once were, and they are devastated and grieving.

For Parkinson’s patients, this erosion of self is often associated with the effects of motor dysfunction. Experts recommend that patients who appear to suffer from depression undergo a comprehensive psychiatric workup to identify whether demoralization may be part of the problem. Antidepressants may indeed be included in the regimen. But for those who are demoralized, treatment focuses on ways to help the patient feel less isolated. This includes verbally validating a person’s experience of the ongoing losses the illness is causing, identifying solutions to challenges in the physical world, and setting and marking an ongoing series of concrete goals that can show proof of achievement.

The depressed/demoralized discussion may sound like nothing more than semantics. At its core, though, it’s about helping someone with a grave illness to regain a modicum of control.

Eve Glazier, M.D., MBA, is an internist and assistant professor of medicine at UCLA Health. Elizabeth Ko, M.D., is an internist and primary care physician at UCLA Health.

Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o Media Relations, UCLA Health, 924 Westwood Blvd., Suite 350, Los Angeles, CA, 90095. Owing to the volume of mail, personal replies cannot be provided.