Tackling Stigma in Parkinson’s Disease

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Stigma significantly affects individuals with Parkinson’s disease and their caregivers, diminishing quality of life and causing social and psychological challenges.

“By understanding the stigma associated with Parkinson’s disease, we can determine the extent of the problem and provide recommendations to address it,” wrote a team of investigators led by Sophie Crooks, a Ph.D. researcher at Queen’s University Belfast, Northern Ireland, United Kingdom. “This will help raise public awareness and promote Parkinson’s disease stigma as an important public health issue, ultimately improving the lives of those affected and fostering a more inclusive and supportive society.”

The neurological condition has doubled in prevalence over the past 25 years, affecting over 8.5 million people globally. Stigma surrounding Parkinson’s disease deeply affects individuals and caregivers by worsening social isolation, psychological distress and quality of life. Despite extensive research on the condition’s clinical aspects, the social and emotional challenges remain underexplored.

Investigators identified studies exploring the stigma experienced by people affected by Parkinson’s disease by searching six databases, websites and reference lists. A total of 22 studies published between 2002 and 2024 were reviewed, revealing five themes:

Stereotypes in Parkinson’s Disease: Misconceptions about symptoms, age stereotypes and cultural beliefs exacerbate stigma.

Patients cited misinformation that Parkinson’s disease is defined only by visible motor symptoms, such as tremor, and expressed their annoyance at the lack of awareness and oversimplification of the condition. Additionally, those with motor symptoms and difficulty performing activities of daily living were more likely to have higher stigma levels. Another myth patients pointed to was the idea that the disease develops exclusively in older people. For the patient, this can lead to delays in diagnosis and skepticism from others when revealing their diagnosis.

Some individuals reported stigmatization due to the belief that witchcraft, curses and other supernatural forces were responsible for the development of symptoms. This can lead to social isolation and discrimination within their communities.

Drivers and Facilitators of Stigma: Factors include disease duration, severity, public ignorance and negative media portrayals.

One study revealed that patients in the later stages of the disease reported feeling more stigma, and another found that disease severity was linked to both exacerbated stigma and poorer quality of life. Mental health conditions and other comorbidities increased these feelings of stigma.

Studies also mentioned the influence of media representation as a reason there are so many skewed perceptions of the condition.

Impact on Mental Health and Well-Being: Stigma heightens shame, embarrassment and social isolation.

People with Parkinson’s disease reported feeling ashamed or embarrassed because of stigma. Many worry about being seen as incapable or “different,” which leads them to hide their condition. These feelings of shame often cause people to avoid social situations, stay home and lose self-confidence, which can harm their mental health.

Individuals said they were uncomfortable around others because of their symptoms, leading to self-consciousness and social withdrawal. Some avoid going out altogether, feeling embarrassed and isolated. At work, stigma can make things even harder.

Responses to Stigma: Individuals use coping strategies like seeking social support and building resilience.

Coping strategies included trying to conceal symptoms — such as holding onto purse straps or keeping their hands in their pockets — and avoiding social situations altogether to mitigate feelings that they were being judged or watched.

This stigma led them to feel embarrassed and ashamed, and some exhibited internalized stigma based on societal beliefs about their capabilities. Depression, anxiety and loneliness were also intensified because of public stigma. However, self-compassion was shown to play a critical role in reducing the negative impact of stigma on their mental health.

Beyond Stigma: Positive experiences, advocacy and resilience highlight the strength of the community.

While stigma exists, many individuals affected by Parkinson’s disease have also encountered kindness and support from others. Support groups have been particularly valuable, providing safe spaces where people can share their experiences without fear of judgment. These groups foster a sense of understanding and community, helping people feel less alone in their journey.

For some, stigma became a motivator to advocate for change by using their experiences to educate others and raise awareness about the condition. Some even embraced their identity as individuals living with the condition, choosing to find strength in self-acceptance despite societal challenges.

“These insights highlight the need for targeted education, awareness campaigns and advocacy initiatives,” investigators concluded.