Parkinson’s Europe Workplace Survey – Findings & What They Mean

We want to extend our sincere thanks to every member of our community who took part in the Parkinson’s Europe “Welcome in the Workplace” Survey. Your participation has helped highlight the very real challenges facing people diagnosed with Parkinson’s—particularly Early Onset Parkinson’s Disease (EOPD)—as they navigate work, career stability, disclosure, and long-term financial security.

EOPD Ireland has a comprehensive information hub providing support on disclosing your diagnosis to your employer, understanding your rights in the workplace, and your employer’s responsibilities, including reasonable adjustments and workplace accommodations. If you have any queries or need guidance you can always reach us at info@eopd.ie. We’re here to help.

What the Survey Reveals

The survey results provide an essential picture of workplace experiences across Europe. Many individuals reported concerns around job stability, stigma, lack of understanding from employers, and uncertainty about their rights after receiving a diagnosis. These insights reinforce what our community tells us every day.

People living with Early Onset Parkinson’s Disease (EOPD) needs better workplaces that are informed, supportive, and equipped to meet their needs. Employers play a vital role in creating an inclusive environment by adapting facilities, offering reasonable accommodations, and fostering understanding. These measures benefit not only employees with EOPD but all colleagues with disabilities, ensuring everyone can thrive and contribute meaningfully at work.

Below are some of the key findings:

1. Many people with Parkinson’s could stay in work longer with proper support

Two in five respondents said they could have remained in employment longer if they had received appropriate workplace accommodations. The most helpful supports identified included:

  • Flexible working hours
  • Remote or hybrid work options
  • Adjusted duties
  • Time off for medical appointments

However, many still face barriers:

  • 26% did not know they were entitled to request accommodations
  • 9% requested accommodations but were refused
  • 15% chose not to ask due to fear of negative consequences

2. A widespread lack of knowledge about workplace rights

A large number of respondents had limited understanding of their legal protections.

Key findings include:

  • 62.8% were unfamiliar with the right to reasonable workplace accommodations
  • 47% were “not familiar at all” with employment regulations related to disability or chronic illness in their country
  • Only 6.5% found it “very easy” to access information about their entitlements

This indicates a significant gap between legal rights and practical understanding.

3. Fear of stigma strongly influences decisions around disclosure

For many people with Parkinson’s, fear—not symptoms—is the biggest barrier to disclosure.

Among those who had not disclosed:

  • 42% cited fear of discrimination, being treated differently, or being sidelined
  • 21% feared losing their job or contract

Disclosure patterns varied widely:

  • 54% disclosed immediately
  • 24% disclosed only when symptoms affected work
  • 21% chose not to disclose at all

4. Employer responses were mixed—but often more positive than expected

Despite widespread fear of stigma, many respondents reported supportive experiences after disclosure.

Reactions included:

  • Almost half experienced a very supportive response from employers
  • Only 7% described a “very negative” reaction
  • Among colleagues and clients, 28% reported very supportive responses, compared to just 3% who felt reactions were very unsupportive

This suggests that anticipated stigma may be higher than the actual discrimination encountered by those who disclose.

5. Parkinson’s has a significant financial impact on working lives

Read the Full Report

The financial effects of a diagnosis can be severe.

Key findings:

  • 58% said their diagnosis affected their financial security
  • 33% estimated annual losses over €20,000
  • 11% reported losses over €50,000

These financial impacts were often linked to reduced hours, early retirement, career changes, or increased costs related to treatment and daily living.

6. Personal stories highlight both resilience and systemic barriers

Respondents shared a wide range of experiences—from highly supportive workplaces to accounts of dismissal, misunderstanding, and discrimination. Many highlighted the impact of symptoms such as fatigue, rigidity, or masked facial expressions, which were often misinterpreted or poorly understood by employers and colleagues.

These personal stories reveal both the resilience of individuals living with Parkinson’s and the urgent need for systemic improvements.

Why This Matters

The findings demonstrate the need to:

  • Increase awareness and understanding of Parkinson’s, especially EOPD
  • Strengthen workplace policies
  • Reduce stigma and misinformation
  • Ensure people can easily access clear information about their rights and supports

This data will shape advocacy efforts across Europe and strengthen the case for better protections, understanding, and workplace inclusion.

The complete survey findings are now available on the Parkinson’s Europe website. We encourage individuals, employers, HR teams, and policymakers to read the report and use it to drive meaningful improvements for people living with Parkinson’s.