Understanding Public Awareness and the Lived Experience of Parkinson’s Disease in Ireland

By Sophie Crooks

Parkinson’s Disease (PD) is the fastest growing neurological condition worldwide, yet public understanding of the condition remains limited. My doctoral research, carried out in Queen’s University Belfast in partnership with Parkinson’s Ireland, is the first study to explore both public awareness of PD and the lived experiences of people affected by the condition across the island of Ireland. Using a mixed-methods approach, including a large public survey and in-depth interviews with people with PD, carers, and specialist nurses, the research highlights important gaps in awareness and the consequences these gaps have for everyday life.

Parkinson’s Disease: More than a Tremor

In our all-Ireland survey of almost 800 people, we found that while the public is generally familiar with the well-known motor symptoms of PD such as tremor and mobility difficulties, awareness of the condition’s broader symptom profile is much more limited. Motor symptoms were what most respondents most strongly associated with PD, yet understanding of non-motor symptoms, including sleep disturbance, anxiety, depression, fatigue, pain, hallucinations, and cognitive changes, was significantly lower. Only 42% of participants reported feeling informed about available treatments, and over one-third (33.7%) said they had witnessed or encountered some form of stigma related to Parkinson’s.

A number of misconceptions also emerged. Some respondents believed PD was simply a natural part of ageing, while others were unsure whether it could be treated, prevented, or cured. These findings are consistent with international research showing that public understanding often centres on the most visible symptoms. However, this is important because non-motor symptoms can have a profound impact on quality of life. When the public focuses solely on tremor or movement difficulties, other symptoms may be overlooked or misinterpreted, which can influence how people with PD are perceived and supported. Encouragingly, almost half of those surveyed (46.2%) identified social media as the most effective platform for raising awareness, highlighting a clear opportunity to improve understanding and promote more supportive attitudes across Ireland.

Breaking the Stigma

The interviews with people living with PD and their carers brought to life the real-world consequences of public misunderstanding. Many participants described feeling noticeably self-conscious in public, particularly when symptoms such as tremor, freezing of gait, or involuntary movements drew unwanted attention. Several recounted situations where others assumed they were intoxicated, or confused —assumptions that often led to feelings of embarrassment, frustration, or shame. These moments, while sometimes brief, accumulated over time and shaped how individuals navigated their daily lives.

Because of these experiences, many people reported withdrawing from social activities they once enjoyed, choosing instead to stay home or restrict outings to familiar environments. Some planned trips outside the house with great care, timing them around symptoms or choosing only places where they felt they would not be judged. This gradual pull away from everyday life often contributed to a loss of confidence, reduced independence, and increasing reliance on close family members.

Yet the research also highlighted an encouraging side. Alongside the challenging experiences were stories of compassion. Strangers offering assistance, communities showing patience, and moments where a simple explanation transformed an interaction. Parkinson’s Disease Nurse Specialists echoed this balance, noting that while misinformation and stigma persist, the public is generally receptive and willing to understand when given clear, accessible information. Their insight underscores a hopeful message: targeted education and greater visibility can have a powerful impact, helping to foster more understanding, supportive environments for those living with PD.

Education: The Path to Better Support

A key finding across all groups, the public, people with PD, carers, and nurses, is that awareness campaigns and community engagement could make a significant difference. People expressed a strong desire for more visible, accessible information about PD, particularly about non-motor symptoms and the day-to-day realities of living with the condition.

Participants suggested practical opportunities such as:

· Public awareness campaigns that highlight a broader understanding of PD.

· Education in schools, universities, and workplaces, so PD is recognised beyond stereotypes.

· More visibility of people with PD in media and public life, showing both challenges and strengths.

· Community-based activities (e.g., exercise groups, choirs, dance classes) that are more readily available, promote inclusion and reduce social isolation.

The findings reflect both the challenges and the optimism within the PD community. While stigma and misunderstanding persist, there is enormous potential to improve public knowledge and create more inclusive, supportive communities across the island of Ireland.