A recent study of social media conversations about Parkinson’s across Europe has brought to light several significant unmet needs in people with Parkinson’s.
Over 22 months, starting from January 2024 to the end of October 2025, 450,000 social media posts on Facebook, YouTube, Instagram, LinkedIn and TikTok and other websites were analysed for Parkinson’s mentions on behalf of Britannia Pharmaceuticals Ltd.
The social listening study found that a significant part of the Parkinson’s community are frustrated about the amount of access they have to clinicians, and often find the healthcare system hard to navigate. It also underlined what we already know about a chronic lack of support for caregivers, among other findings.
The report’s main conclusions were:
1. Non-motor symptoms overlooked at Parkinson’s appointments
Non-motor symptoms are being overlooked by healthcare professionals at appointments, contributing to a lower quality of life and increased stress for people with Parkinson’s and their families, the report found. Patients are frustrated about their care, citing a “lack of guidance on managing non-motor symptoms such as cognitive changes, mood disturbances, and sleep issues,” the report said. This is despite studies such as the PRISM survey of six European countries showing how common non-motor symptoms including sleep, urinary, cognitive and mood disturbances are among those who live with Parkinson’s, and a Lancet Public Health study finding that symptoms such as depression, anxiety, apathy and psychosis strongly reduce quality of life.
2. Navigating the healthcare system is challenging for people with Parkinson’s and their caregivers
A lack of understanding of Parkinson’s is making it hard for those living with the condition and their caregivers to navigate the healthcare system, the report found. “Patients often lack sufficient health literacy to navigate treatment options, manage symptoms effectively, and plan for long-term care,” the report said. It listed frustration with fragmented care, delayed diagnoses, and a lack of guidance on managing non-motor symptoms among the complaints. Navigating healthcare was one of the study’s negative discussion themes, which in the UK made up 15% of Parkinson’s-related mentions.
3. Limited access to healthcare professionals frustrates people with Parkinson’s
We know from previous Parkinson’s Europe studies that across Europe, Parkinson’s patients rely on a limited pool of neurologists, with an average of 8.45 neurologists per 100,000 people in Europe, and this was reflected by the report. Challenges in accessing healthcare for people with Parkinsons are “commonly discussed,” it said, with negative conversations exposing “systemic frustrations, notably delays or lack of access to therapies, uneven support across regions, and uncertainty about long-term care.”
In 2024, the Irish Times told how two-thirds of people with Parkinson’s in Ireland had to wait more than six months for their first appointment with a clinician after being referred by their doctor. This story was viewed over 6,300 times, suggesting it struck a chord with readers.
4. Poor communication between healthcare professionals and people with Parkinson’s and their caregivers leaves them vulnerable to misinformation
The lack of access to healthcare professionals also contributes to poor communication between them and people with Parkinson’s and their caregivers. The report described communication as being often “inconsistent, leaving critical needs inadequately addressed.” It recorded people with Parkinson’s complaining about difficulties in accessing specialist advice, insufficient information about progression of the condition and that there was limited discussion of treatment options.
We know that when communication with healthcare professionals is good it is of great value – a 2019 Parkinson’s Europe survey of caregivers showed that nearly a third (30.3%) seek information from healthcare professionals during consultations and that nearly three-quarters (73.6%) of those find them “useful” or “very useful” as a source of information about the condition.
One of the consequences of both lack of access to and poor communication with healthcare professionals is that people with Parkinson’s and their caregivers have insufficient knowledge about the condition. In this situation, they turn to online searches to “consistently seek clearer guidance on what life with Parkinson’s truly means,” suggesting “a demand for comprehensive, accessible support and information across Europe,” the report says. Topics searched include daily living, non-motor symptoms, disease progression, prognosis and access to care.
The report highlighted the potentially dangerous consequences of the results of some of the internet searches it recorded about Parkinson’s, such as “Is Parkinson’s curable?” and “I cured my Parkinson’s disease,” showing that online information is not always reliable. “This highlights a significant vulnerability to health misinformation,” the report said.
5. Lack of support for caregivers is widespread
The real-life impact of Parkinson’s on patients and their families is one of the main conversation topics on social media, covering emotional and psychological strain, physical limitations and financial pressures. Caregivers face “significant unmet needs,” the report found. “Many feel under-informed and unsupported, struggling to balance emotional, practical and respite responsibilities. Caregivers often experience burnout due to lack of guidance, limited access to training, and insufficient formal support services, which are essential to sustaining long-term care at home,” the report said. The findings highlight the burden on caregivers, and the need for comprehensive support systems for them.
6. New advances in treatments drive conversations about Parkinson’s
Advances in research and treatment is one of the main conversation drivers among the online Parkinson’s community, generating “significant attention,” says the report. Online news, representing 57% share of voice, generates the most mentions in conversations about Parkinson’s, it found, and is the main subject of online conversations about Parkinson’s in the UK, Spain, France and Germany. Topics such as new drug therapies, early-detection methods, ongoing clinical trials, and technological innovations capture public interest, offering hope for better management of symptoms and improved quality of life.
7. The financial cost of Parkinson’s
In the UK, financial pressures on both people with Parkinson’s and their caregivers was one of negative themes discussed online, the report showed, with the financial burden being one of the factors often mentioned when people with Parkinson’s talk about the challenges and personal impact of the condition on their lives and their family’s.
As many caregivers are the spouse or relative of the person with Parkinson’s, they may suffer financial strain from lost income due to caring. Their financial burden may also increase as Parkinson’s progresses as they face additional costs related to therapies, home adaptations and daily living, the report found.
8. Women bear the impact of Parkinson’s
Women are affected by Parkinson’s in two different ways – the first is that 67% of caregivers are the female spouse of the person living with the condition and therefore experience the negative impact of that change on their daily lives, providing support such as medication management, device handling and symptom monitoring.
The second is that women living with Parkinson’s face additional challenges, including the suspected influence of hormonal changes on symptoms and limited access to tailored treatments as these issues are rarely addressed in research or clinical practice.
A 2024 Parkinson’s Europe story about person with Parkinson’s, dietitian and founder of the My Moves Matter Parkinson’s app Richelle Flanagan launching the first ever study into the impact of hormonal fluctuations on women with Parkinson’s had 1,888 views, suggesting that the idea that women might need a different treatment approach than men is of definite interest among the Parkinson’s community. Richelle is also listed as one of the top Parkinson’s authors on X.
