A World Federation of Neurology and International Parkinson and Movement Disorders Society Collaboration

By Tissa Wijeratne, MD, Wolfgang Grisold,MD, Claudia Trenkwalder, MD, William Carroll, MD

World Brain Day was launched in 2014. Since then, the WFN, jointly with other international societies such as International League Against Epilepsy, World Stroke Organization, and the International Headache Society, chooses a topic with a view to drive home the importance of brain health and promote better neurological care globally.

Based on this background, the WFN chose the topic of Parkinson’s disease jointly with the International Parkinson and Movement Disorders Society (IPMDS) as the topic for World Brain Day 2020. As in preceding World Brain Day events, the aim of World Brain Day 2020 is to alert not only its member societies, but also the public on critical neurological issues. The member societies of the WFN will receive a “toolkit” of templates for press releases and also educational PowerPoint presentation sets to assist in their local activity to promote World Brain Day and advocate for patients with Parkinson’s disease and their caregivers.

Local press conferences and press coverage, including print, electronic, radio, TV, and YouTube are strongly encouraged to reach the public.

Let us spread the key messages from World Brain Day 2020 “Move Together to End Parkinson’s Disease” through mainstream media, social media platforms, and local, regional, national, and international meetings throughout the year. Please see and share our new logo, the web banners, social media images, and other educational material in your country. We invite our readers to rally around World Brain Day 2020 “Move Together to End Parkinson’s Disease.”

Please make the World Brain Day 2020 campaign an important priority. The educational and promotional material from the WFN and IPMDS collaboration will help you to be the best advocates for your patients with Parkinson’s disease and their caregivers. •

Prof. Tissa Wijeratne is chair of World Brain Day and chair of neurology at Western Health in Melbourne, Australia.

Prof. Claudia Trenkwalder is president of the IPMDS and professor for Movement Disorders at University Medical Center in Goettingen, Germany and medical director of Paracelsus-Elena Klinik, the largest hospital for Parkinson and Movement Disorders in Kassel, Germany.

About Parkinson’s Disease

Prevalence: Parkinson’s disease is a chronic neurodegenerative brain disease that affects more than 7 million people of all ages worldwide, and its prevalence continues to increase.

Disability: Parkinson’s disease is a whole-body disease that affects the mind, movement, and almost all aspects of brain function, with symptoms worsening over time.

Standard of Care: Access to quality neurological care, life-changing treatments, and essential medication is unavailable in many parts of the world.

Research: Additional resources are needed to help unlock the cause, onset, progression, and treatment of this disease across all ages.

Advocacy: It’s important to work together to diagnose earlier, treat more effectively, and improve the lives of those living with Parkinson’s disease and their caregivers.

The 2016 Global Burden of Disease of Parkinson’s disease studied its global burden between 1996 and 2016 to identify trends and to enable necessary public health, scientific, and medical responses in 20181. Over the past generation, the global burden of Parkinson’s disease has more than doubled with potential longer disease duration and environmental factors¹. We can expect that the trend will continue in the next few decades with the possibility of 12 million patients with Parkinson’s disease worldwide by about 2050².

The comorbid diagnosis itself has not emerged as a specific risk factor for poor outcomes of COVID-19³. The hidden sorrows (potential medication supply issues, disruption to research, and clinical trials), and emerging opportunities (telemedicine, how the pandemic influences the course of Parkinson’s disease, and taking advantages of technology, such as wearable technology) have been visible during the COVID-19 pandemic^3,4.

Parkinson’s disease is a complex disease process of the human brain that results in a broad spectrum of clinical features encompassing all aspects of human function. These primarily motor dysfunctions as well as non-motor symptoms can significantly limit the patient’s ability to take part in typical day-to-day activities with poor quality of life

It is indeed essential to understand the caregiving aspects and burden in Parkinson’s disease. Findings from a published meta-analysis indicate that motor symptoms and dependence in activities of daily living have a moderate relationship with caregiver distress⁵. Non-motor symptoms such as impaired cognitive function, including hallucinations, confusion, and affective disorders such as depression and anxiety, have a significant effect on caregiver strain. It is the hours spent on caregiving activities and sleepless nights that are strongly associated with caregiver burden⁶.

References:

1. Collaborators, G.B.D.P.s.D., Global, regional, and national burden of Parkinson’s disease, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol, 2018. 17(11): p. 939-953.
2. Rocca, W.A., The burden of Parkinson’s disease: a worldwide perspective. Lancet Neurol, 2018. 17(11): p. 928-929.
3. Papa, SM, et al., Impact of the COVID-19 Pandemic on Parkinson’s Disease and Movement Disorders. Mov Disord, 2020.
4. Helmich, R.C. and B.R. Bloem, The Impact of the COVID-19 Pandemic on Parkinson’s Disease: Hidden Sorrows and Emerging Opportunities. J Parkinsons Dis, 2020. 10(2): p. 351-354.
5. Lau, K.-M. and A. Au, Correlates of Informal Caregiver Distress in Parkinson’s Disease: A Meta-Analysis. Clinical Gerontologist, 2011. 34(2): p. 117-131.
6. Bhimani, R., Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature. Rehabil Res Pract, 2014. 2014: p. 718527.