The ZEST (Zimbabwean Epilepsy Stroke and demenTia) study: disentangling the intersections between epilepsy, stroke and dementia in older Zimbabwean populations

Research question: How can we begin to solve the impending brain health crisis in older Africans? Background: One of the greatest threats to healthcare globally is the burgeoning impact of neurological disorders in older people. Countries where the need is increasing most quickly are also the ones where there is the least infrastructure to cope with that demand. In Zimbabwe, the number of people with dementia is predicted to rise by over 200% in the next 25 years, yet per-capita spending on healthcare is falling. There is, therefore, a clear need to seed projects that can understand brain health in Africa and deliver culturally contextualised, sustainable solutions to mitigate this health emergency. Aims and Objectives: Accelerate knowledge about brain disorders at all levels, from community through to Ministers of Health, Destigmatise brain health disorders Better diagnose brain health disorders Refine technologies to enable longitudinal deep phenotyping of people with later onset epilepsy and stroke Develop tailored guidelines around scalable interventions that align with the World Health Organization Intersectoral Global Action Plan (WHO IGAP) Create a Zimbabwean Centre of brain health Methods: This study will be embedded in communities and iteratively built with local support and bidirectional learning to deliver sustainable change. I will hold eight large workshops, 16 smaller focus groups and acquire oral histories from 150 individuals. I will study the lived experience of epilepsy, stroke and dementia to gain broad insights into the neurological health of older Zimbabweans and the stigmatisation those with brain disorders may face. We will deep phenotype and prospectively track 180 people with stroke to evaluate cognitive, vascular and seizure outcomes. A control cohort of 180 aligned individuals will be similarly monitored. In parallel, we will screen 6000 older people for epilepsy, derive the true prevalence of epilepsy in this population and longitudinally deep phenotype individuals with seizures. I will run a pragmatic trial that evaluates whether locally appropriate interventions (pharmacological and non-pharmacological) improve cognitive and vascular outcomes in people with late onset epilepsy. Taken together, this work will provide robust data to garner further funding, develop guidelines and durably improve brain health. Timelines for delivery and anticipated impact: Within 2.5 years, we will complete all oral history acquisition, create a digital repository, develop community-based brain health champions, provide techniques to destigmatise epilepsy, dementia and stroke at scale By year 4, incident and prevalent cohort studies will be completed. Clinical trial recruitment will have been conducted, with last patient last visit in 4.5 years By the end of the project, we will have seeded brain health research through Zimbabwe, have worked with Ministers of Health to embed guidelines aligned with WHO IGAP and established systems to metric guideline adherence, have created substantial new research capacity, have founded the Zimbabwean Centre for brain health, have provided open access to high impact publications and provided blueprints of how to deliver similar work in other countries, established far-reaching collaborations and secured future funding to embed positive change sustainably.