Case Study
Community-based education initiatives and sustainable partnerships for Parkinson's Disease awareness, care and support in Nigeria
Presented: by John Akinola, Senior Programs Manager, Adewunmi Desalu Parkinson’s Foundation (ADPF), Nigeria
Introduction
It is an honour to be here during Africa Week at the University of Leeds, a celebration that bridges continents and fosters mutual understanding. Today, we embark on a journey fuelled by compassion, knowledge, and unwavering commitment. Our destination is a world where Parkinson’s Disease (PD) no longer casts shadows of fear and uncertainty.
Parkinson's disease in Nigeria
Overview
Parkinson's Disease is a progressive neurological disorder that affects movement, muscle control, and balance. It often manifests with symptoms such as tremors, stiffness, and impaired balance, along with psychological effects like depression and anxiety. In Nigeria, awareness and understanding of Parkinson’s Disease are limited, resulting in late diagnoses, inadequate treatment, and insufficient support systems for patients and their families.
Parkinson's Disease (PD) is emerging as a significant and rapidly growing health concern in Nigeria, particularly among the aging population. Globally, PD affects 1-2% of individuals over 60 years, making it the fastest-growing neurological condition.
The urgency of the issue lies in the fact that Nigeria has the largest population in Africa, with around 5.25 million people above the age of 65. This puts them at an increased risk of developing Parkinson's Disease due to ageing, despite underreporting and underdiagnosis.
Data Source: World Health Organisation (WHO). PD assessment and disease burden
Prevelance and challenges
The prevalence of Parkinson’s Disease in Nigeria is increasing, yet many cases go undiagnosed. The stigma associated with neurological disorders further complicates care and support. Misconceptions and myths surrounding the disease also lead to ineffective or delayed treatment, thus exacerbating the challenges faced by those affected.
Undiagnosed Cases: Many Parkinson’s Disease cases in Nigeria go undiagnosed.
Stigma: The stigma associated with neurological disorders complicates care and support.
Knowledge Gap: There is a significant gap in knowledge among the public and healthcare professionals, leading to ineffective or delayed treatment.
Inadequate Treatment Centres: Currently, only the Adewunmi Desalu Parkinson Foundation provides adequate rehabilitative care and support within Nigeria.
Who we are
We are the Adewunmi Desalu Parkinson’s Foundation (ADPF), named after Dr. Adewunmi Desalu who lived with Parkinson’s Disease (PD) until his passing, and we aim to address these challenges. Our mission is to provide education, support, and specialized care to those affected by PD in Nigeria. Our approach is built on community-based education initiatives and sustainable partnerships, ensuring a holistic and inclusive strategy to combat PD.
What we do at Adewunmi Desalu Parkinson's Foundation
Workshops and Storytelling Sessions: Organize awareness campaigns in local languages to dispel myths about Parkinson’s Disease through symposiums, webinars, community campaigns, rallies, and awareness walks.
Use of Local Media: Utilise radio, TV, print, and social media to spread PD awareness in three major Nigerian languages and the Nigerian Pidgin English.
Referral Pathways: Establish pathways for referring suspected Parkinson’s Disease cases to neurologists for timely diagnosis and treatment.
Physiotherapy and Fitness Programs: Develop individualized physiotherapy plans and offer fitness programs like dance therapy, non-contact boxing, walking football, and table tennis.
Comprehensive Care: Provide speech and occupational therapy, nutrition education, and medication management to ensure holistic care.
Support Groups: Provide hybrid support groups for individuals living with Parkinson’s Disease and their caregivers to improve psychosocial well-being, enhance knowledge about the disease, and develop coping strategies. Topics covered include nutrition education.
Our immediate outcomes
Increased Awareness: Communities are recognizing symptoms and seeking help sooner.
Empowerment: Patients and caregivers feel more empowered and supported.
Quality Care: Stronger rehabilitation care systems and more compassionate providers are part of ADPF’s legacy.
Challenges as catalysts for change
Despite progress, challenges remain, which ADPF views as opportunities for growth:
Infrastructure Gaps: These are seen as bridges waiting to be built, collaborations, opportunities for technical expertise to facilitate sessions, and funding to reach the unreached.
Stigma: By shattering stereotypes one truth at a time, ADPF is defying stigma.
Inequities: Opportunities lie hidden within disparities, and ADPF is committed to uncovering them.
Research: Evidence-based interventions for supporting the Parkinson’s community in Nigeria are critical to ensuring sustainable development.
A call to action for support
Today, I urge you all to consider how you can contribute to this cause, whether through partnership, research, funding, or advocacy, every effort counts. By fostering community-based education initiatives and sustainable partnerships, we can create a world where individuals with Parkinson’s Disease in Nigeria receive the care, support, and understanding they deserve.
“Open Africa, Open World” —the theme— calls for opening the gates of compassion, empathy, and collaboration. Together, let’s create a safety net that cradles dignity, care, and unwavering support for those living with Parkinson’s Disease.
Thank you for the opportunity, Prof. Kimberly Campalleno, Prof. Kendi Guantai, Dr. Brendon Nicholls, Dr. Winnifred Bedigen, the Africa Week Planning team, and the entire administrative team of the University of Leeds.
John Akinola
Senior Programs Manager
Adewunmi Desalu Parkinson’s Foundation (ADPF) Nigeria
www.desaluparkinsonsfoundation.org
+234 1 493 5909, 08162868616
info@desaluparkinsonsfoundation.org
johnka@desaluparkinsonsfoundation.org
3 Owukori Crescent, Alaka Estate,
Surulere, Lagos, Nigeria.