Stopping the Spiral Toward Demoralization in Parkinson’s Disease

People with chronic diseases such as Parkinson’s disease (PD) are at risk of spiraling into a demoralized state. Common symptoms include feeling helpless, hopeless, a sense of failure and incapacitated to respond to stressful situations. Doctors frequently fail to identify or address this issue. There is sparse research and a rare interest in screening for demoralization. In this month’s What’s Hot in PD? column we will address demoralization in Parkinson’s disease and suggest strategies to identify and address this problem.

Brian Koo, MD, and colleagues in the April edition of Neurology set out to determine the prevalence and associated features of demoralization. The researchers studied 96 people with Parkinson’s disease and compared them to 86 people without Parkinson’s.

Demoralization was measured by the Diagnostic Criteria for Psychosomatic Research, the Demoralization Questionnaire or the Kissane Demoralization Scale score. Study participants were counted as demoralized if any of the three scores were positive. Eighteen percent of people with Parkinson’s were demoralized as compared to eight percent of those without PD.

Depression was associated with demoralization, although interestingly there were participants who were demoralized but not depressed and those who were depressed but not demoralized. Younger unmarried participants with worse motor scores on the Unified Parkinson’s Disease Rating Scale (UPDRS) examination were at particular risk for demoralization (Koo, 2018).

The bottom line for people living with PD and care-partners is that demoralization is present in about one in five people with Parkinson’s. This symptom should not be confused with depression although it may co-occur with depression.

Tips for Addressing Demoralization

1. Know that younger unmarried people with PD who experience burdensome motor symptoms have a higher risk of demoralization.
2. Get a referral for a licensed clinical social worker or counseling psychologist.
3. Try cognitive behavioral therapy. More research is needed on this technique in its effectiveness with demoralization.
4. Do not assume that depression is the cause of demoralization.
5. If depression and/or apathy is present, treatment can help.
6. Getting a referral to a psychiatrist may be useful in select cases.
7. Talk to doctors and members of the care team who are positive.

Selected References

Koo BB, Chow CA, Shah DR, Khan FH, Steinberg B, Derlein D, Nalamada K, Para KS, Kakade VM, Patel AS, de Figueiredo JM, Louis ED. Demoralization in Parkinson disease. Neurology. 2018 Apr 4. pii: 10.1212/WNL.0000000000005425. doi:10.1212/WNL.0000000000005425. [Epub ahead of print] PubMed PMID: 29618626.

You can find out more about our National Medical Director Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.