On August 23 PMD Alliance hosted a webinar on Thriving with PD. Of particular interest is the portion of the speaker’s comments beginning at timestamp 23:45 about the difference between depression and demoralization.
I did not take notes on the entire webinar, just the portion where the host, Indu Subramanian, MD, asked the guest speaker, Janis Miyasaki, MD, about the distinction between depression and demoralization.
You can watch the webinar on the PMD Alliance YouTube channel.
Also (not related to PD) here is a 7-minute vlog and accompanying blog post by psychiatrist Suzan Song from Dec. 2020. In it she distinguishes between depression and demoralization and offers tips for coping with demoralization.
The Stanford Parkinson’s Community Outreach Program has more information about Depression in Parkinson’s Disease here.
And now, on with my notes…
Thriving with PD
August 23, 2021
Host: Indu Subramanian, MD
Speaker: Janis Miyasaki, MD
Janis Miyasaki, MD, is a movement disorders and palliative care specialist. She says families often bring up the concern that their family member with Parkinson’s (PD) are suffering from depression, but when screened the person with PD does not meet the criteria for depression.
Instead, they are suffering from demoralization. This is a natural response when one has been doing exactly what they’re told year after year, yet still their capabilities decline due to advancing disease. This feeling of hopelessness is most common when there has been a significant change in their health; like after a hospitalization, diagnosis of a new medical condition, or they are experiencing cognitive or behavioral changes.
Depression is a constellation of symptoms in which you feel hopeless, but you also no longer have the ability to feel joy, you are tearful, unable to engage socially due to lack of motivation and have low mood.
Demoralization is hopelessness or sense that no matter what you do things aren’t going to get better.
Dr. Miyasaki says we must not let patients sit in that space. We must help them to see that doing everything in their power to keep from deteriorating more quickly IS success.
A big part of helping people get to that realization is goal setting because goal setting provides meaning. It gives you an anchor and when you achieve a goal you have a sense of accomplishment.
Another part is to find joy in small things. We’ve all had to do this with COVID, like the accomplishment of making fresh bread and enjoying it right out of the oven. Take a walk in a park or the woods, listen to the birds sing, feel the sun on your face, stop and get a cup of coffee on the way.
Keep a gratitude journal. Strangely, studies have found that writing in a gratitude journal daily is less impactful than writing periodically. So, from time-to-time write what you’re grateful for.
Even when you’re on a treadmill of medical appointments and getting your affairs in order, or getting an advance degree, or whatever your everyday or long-term goals are, try to stay in the present moment with mindfulness. Literally stop and smell the roses.
It helps if you’re born with a ‘glass is half full’ disposition, but instead of saying “poor me,” get up and walk, find something to look forward to.
Social connection is very important but oftentimes those who we thought were our friends disappear. You need to make new friends. Connect with young people, your family, neighbors, or fellow support group members.
People underestimate the importance of having a supportive caregiver. Care partners can be equally helpful or hurtful. To be rejected or criticized by the primary person you depend on because you have a physical illness is devastating.
Likewise, it’s important for the medical team to be a cheerleader for care partners; to educate them so they can be prepared for the most likely future and let them know they are doing a great job. Because care partners often feel they’re not doing as much as they could be, even though they are exhausted.
Dr. Miyasaki tells her patient’s caregivers that nobody’s perfect. This is the first time they’ve walked this road. How could they possibly know everything and do everything and be patient 100% of the time. It’s important for them to hear that.