Ep 31 - The Unseen Burden: Uncovering Shame and Its Determinants in Parkinson's Disease

🎙️ We’re back with episode 31 of Parkinson Weekly, hosted by Prof. Bas Bloem.

In Episode 31 of Parkinson Weekly, Prof. Bas Bloem explores an often overlooked but deeply important aspect of Parkinson’s disease: shame. Discussing a thought-provoking new paper published in Movement Disorders Clinical Practice, Bas examines how feelings of shame can significantly affect the lives of people living with Parkinson’s.

The episode highlights findings from a Swiss study investigating the relationship between shame, anxiety, guilt, dyskinesias, depression, apathy, and overall quality of life in Parkinson’s disease. Bas reflects on why this under-recognised issue deserves far greater attention in clinical practice and everyday conversations.

Importantly, the discussion goes beyond medication, emphasising the value of open communication, awareness, and non-pharmacological support in helping reduce the burden of shame for people with Parkinson’s and their families.

A thoughtful and compassionate episode shedding light on the emotional realities of living with Parkinson’s disease — and why acknowledging these experiences is an essential step toward better care.

You can read the full article here: https://pubmed.ncbi.nlm.nih.gov/40384367/

 Have a question you’d like Bas to answer in a future episode? Email us at parkinsonweekly@gmail.com – we’d love to hear from you.

Transcript

SPEAKER_01 0:01

Hello everyone, this is Bas Bloom. This is episode 31 of Parkinson Weekly, discussing yet another new, hitherto poorly described phenomenon in Parkinson's disease, namely the issue of shame. I'm going to talk about a provocative paper that looked into this vexing issue, which I think is important and it needs to be discussed. So, welcome back everybody here on Parkinson Weekly. I'm going to discuss a new paper that came out in Movement Disorders Clinical Practice. And it was entitled The Unseen Burden: Uncovering Shame and Its Determinants in Parkinson's Disease. Now I must admit, I read about just about everything about Parkinson's disease, but I had not seen much about the concept of shame. Yet when I saw the title, it immediately resonated with me. The authors came from Switzerland. It was a group led, among others, by my close friend and wonderful colleague Paul Crac, who's a French neurologist originally trained in Grenoble, but now living and working in Switzerland, and who, with his team, has taken on a very holistic approach to Parkinson's disease. And what Paul and his team have done is look at the issue of shame using a specific scale called the shame and embarrassment in PD scale, abbreviated as SPARK. And they did this in 47 persons with Parkinson's disease who did not have any cognitive impairment. And what they did is they took the scale and tried to correlate it both to personal determinants, who you are as an individual, your gender, your age, but also psychological traits, such as, for example, whether you were more likely to feel guilty or whether you are more likely to be anxious. And they linked it to Parkinson's-specific determinants, such as the motor disability, but also the cognitive issues, neuropsychiatric symptoms, they linked it to medication and importantly, and I'll come to that in a minute, they linked it to quality of life. Now, what they found is that yes, many people scored abnormal on this spark, on this rating scale for shame. And they found that shame correlated with certain psychological traits, such as anxiety, but also guilt propensity. It also correlated to certain clinical symptoms such as dyskinesias, which is typically a feature seen in more advanced people with Parkinson's disease. Again, anxiety and depression, now measured on scales used for Parkinson's, and also to apathy. And importantly, shame correlated negatively to quality of life. In other words, people who felt more ashamed of their disease, who experienced a greater degree of shame, had a worse quality of life. And indeed, quality of life and also anxiety together explained most of the variation in the extent to which people experienced shame. And I think the strength of this study is that it touches upon an issue that has not received a lot of attention in the literature. Yet I think this is, and I'm speaking out of my own personal experience, a very common phenomenon. People often feel ashamed about their tremor, they may feel ashamed about their walking difficulties, about being slower in public. There are many reasons why people with Parkinson's feel ashamed, even though obviously there's nothing they can do to explain their symptoms other than Mr. P, which is the common enemy in the room. Is it the perfect penultimate study? No. The sample size was relatively small. It probably was a sampled by uh a biased sample. Um they only included people without cognitive impairment. It wouldn't surprise me in if those with cognitive decline would perhaps even have greater uh difficulties. But that's not the point. I think the key reason why I picked this paper is that it points to yet another key element of Parkinson's disease, namely shame. And I couldn't agree more with Paul Krock and his team by saying that this deserves our attention in clinical practice. I think every clinician should be aware of this. Every person with Parkinson's, every family member should be aware of it. We should all realize that it is a complex multifactorial beast, determined in part by your personal traits, but also by disease-specific characteristics. So it's very complex. Anxiety is part, your propensity to feel guilty plays a role. It has a big impact on quality of life. So we should take this paper as a starting point for thinking carefully about how to treat this. Now, certain disease-specific parts of Parkinson's can be treated. For example, anxiety. For example, the dyskinesias, which were also linked in a way to shame. It wouldn't surprise me if treating tremor or gait would help in reducing shame. But very importantly, I think we should also start to think about non-pharmacological interventions, which starts by just bringing up the issue in clinical practice. Just talk about the elephant in the room, bring it to the fore, discuss it with your doctor, discuss it with maybe a nurse or a nurse specialist, talk about shame, and I think that just acknowledging that it could be there, and at least talking about it is part of the treatment. So many, many thanks to Paul Krack and his team for publishing this highly important paper about shame in Parkinson's. Again, it's not ready. We need larger studies, we need intervention studies, but pending such further evidence, be aware that this is an issue, it's a real thing, bring it to the table, discuss it with the team as a first start in bringing, well, reducing the impact of shame on quality of life in people with Parkinson's.

SPEAKER_00 7:29

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