Shame in Parkinson's disease: An unseen burden

We are going to be talking today about shame, not stigma or embarrassment, but shame as a lived emotional experience. To discuss this unseen burden. I'm joined today by Dr. Vanessa Fleury from the University of Geneva, Switzerland, whose article has been recently published in the Movement Disorders Clinical Practice Journal.

Welcome Dr. Fleury, and thank you for being here.

Dr. Vanessa Fleury: Thank you very much for the invitation.

Dr. Divyani Garg: Let's start with the big picture. So shame is often mentioned alongside stigma or embarrassment, but it is only rarely studied on its own. Why was it important for you to focus specifically [00:01:00] on shame in Parkinson's disease?

Dr. Vanessa Fleury: Again and again in the context of my clinical practice and as well with interaction with psychologist Dr. Angelo, who is also a person living with Parkinson's Disease and through many informal conversation with him and with patients shame emerge as a important symptom which impact quality of life and was linked to isolation 

Dr. Divyani Garg: All right. And so from what I understand in terms of differentiating shame from stigma or embarrassment. So stigma is largely about social attitude, whereas shame is has to do with the inner self, how the patient or the person feels that somehow the disease identifies who they are.

Is that correct?

Dr. Vanessa Fleury: Yes, absolutely. We focused on, Parkinson's disease related shame because it's a painful emotion tied to identity. it's [00:02:00] related to stigma, but it is different. It's more internal and it makes as well potentially a treatable.

Dr. Divyani Garg: I also noticed that you used a specific tool in the study to measure shame that is the Spark tool. Can you briefly explain what Spark measures and why was it important to have a Parkinson's specific tool for shame?

Dr. Vanessa Fleury: Yes. When we realized shame was important, we looked for scales to being able to quantify this feeling and we couldn't find anything. So we decided to create a scale which was coconstructed with patients clinician and researchers. It's allowed to identify what are the sources of shame in Parkinson's disease patients.

And we found three main things. First, the symptoms, motor and non-motor, but as well the increase in dependency in induced by Parkinson's disease as [00:03:00] well loss of identity secondary to Parkinson's disease because, yeah. What I wanted to say as well is that shame in Parkinson is like something is wrong.

People think something is wrong with them because of the disease and it's, they define themselves as being the disease. 

Dr. Divyani Garg: Yes. That is very important aspect. I also wanted to talk to you about what you found and when you looked at the different potential contributors to shame, what were the factors that stood out most strongly?

Dr. Vanessa Fleury: Yeah, so we looked at different factors. Our aim was to identify what participated to shame, and we looked at personal factors such as, age, gender, educational level, severity of the disease and psychological traits as well as disease related factors. And what we found and what we were surprised of is that shame is not related to [00:04:00] disease motor severity.

Or disease duration. It's mainly associated with psychological factors such as certain personality traits, such as propensity to feel ashamed, to feel guilty, to feel anxious. The only motor symptoms which related with shame was the dyskinesia when the people were agnostic, when they were aware of their dyskinesia and non-motor symptoms were the most as well associated with the shame.

It was anxiety, depression, apathy, and we confirmed that quality of life was strongly related with with shame.

Dr. Divyani Garg: Yes. I also thought that these findings are really important because a lot of these contributors that you've mentioned are actually potentially modifiable, including depression, apathy, and dyskinesias, which I suppose is because they are quite [00:05:00] visible. So they are potential contributors, but can also be modified.

So it's really heartening to note that these factors that are there are the modifiable factors. So the other fascinating aspect of this study was the cluster analysis. You identified three distinct shame profiles among persons with Parkinson's disease. Can you walk us through those clusters?

Dr. Vanessa Fleury: Yes. So we identified three different shame profiles. Some patients feel ashamed because mainly because of motor symptoms, also, mainly because of non-motor symptoms. And the third group felt high shame from both. And the most effective group wasn't the one with the most severe motor symptoms, but the one with the highest emotional burden.

Dr. Divyani Garg: All right, so let's bring this into the clinic. So based on your findings, what more should clinicians be doing? How can they help address this particular unseen burden for their patients? What can we do to [00:06:00] really help out?

Dr. Vanessa Fleury: First we need to identify shame, that the first step, and then we can talk about it and we can intervene. So first of all, we need to understand where it comes from. If it's dyskinesia it's pretty easy. We can reduce the treatment or propose alternative therapy. But if it's linked with apathy or depression or anxiety, we can as well treat if necessary with medication. But the psychological management is central. We could suggest cognitive behavioral therapy or psychoeducation for these patients. 

Dr. Divyani Garg: And when you say that we should learn to identify this in our patients, what do you think is the best strategy to do that? Do you think we can directly ask them? Or is it better to screen them using particular tools? What would be a practically [00:07:00] useful.

Dr. Vanessa Fleury: I think it's important to, first, to be really aware of this component because patients, they don't come with this complaint first. In fact, they will not tell you I feel ashamed. In fact, they come and they say, yeah, it's not good, but you see the motor state is not that bad.

But in fact, you need to deepen your interview and to look for what is actually the problem. And often it's the psychologist who will see their anxiety, depression, and there is shame almost always associated. So for clinician, I think first to be aware, then to talk with the patients and then to try to see which factors are associated and how we could manage this symptom.

Dr. Divyani Garg: So before we wrap up, I just wanted to ask you if there was one message from the study that you would like to share with our listeners, what would that message be?

Dr. Vanessa Fleury: That Parkinson's disease [00:08:00] related shame is fragment. It's invisible, but highly disabling non-motor symptoms in Parkinson's disease. And it's not about overall motor severity, but it's strongly linked with personality traits, anxiety, depression, and quality of life. Two patients with very similar motor symptom can experience completely different level of shame.

And it's not untreatable. It can really we can address it through tailored and multidisciplinary interventions.

Dr. Divyani Garg: Thank you so much for joining me today, Dr. Fleury, and for talking about this, and most importantly, working on this really important topic. Thank you.

Dr. Vanessa Fleury: Thank you very much. [00:09:00]