Large-scale longitudinal biomedical research studies are difficult to conduct under the best of conditions, in the most developed countries of the world. Such studies are critical to our understanding of the age-related processes which affect the development and progression of human disease over the lifespan. It is critical to perform community-based longitudinal studies in the developing world as well, where the environment, lifestyle, and access to healthcare differ in profound ways from wealthy western countries, especially so for elderly individuals. However, social and economic upheaval and humanitarian crises are not uncommon in the developing world, and it can be difficult to maintain an active longitudinal research project during times of economic and political instability. While every instance of social upheaval and economic chaos will be different, there are lessons that can be learned from the experience of researchers who have successfully managed to keep their research going throughout ongoing humanitarian crises.
The aim of this case analysis is to discuss the strategies implemented by researchers of the Maracaibo Aging Study (MAS) to sustain research efforts during the humanitarian crisis in Venezuela. This report is not focused on research findings from the MAS, but on how different procedures for conducting scientific research with older adults were affected by the challenging and changing conditions in Venezuela, and about the different strategies implemented to mitigate the effects of the crisis on the research program.
Humanitarian context
Venezuela sits on top of 20% of the world’s oil reserves and has long been one of the world’s leading oil exporters. By the turn of the century, when oil prices were skyrocketing, the government had a huge surplus of cash, which they invested in providing social services to its largely impoverished population. The government made food, housing, and healthcare widely accessible to the people. While oil prices were still high, they began revising the constitutional framework to advance what was referred to as twenty-first century socialism, hoping to share the wealth of the nation with the nation’s impoverished masses. Manufacturing, agriculture, mining and the like were taken over by the state, while economic dependency on profits from selling their oil abroad increased dramatically.
This was all fine as long as oil exports remained profitable, but in 2014, global oil prices began to plummet for a variety of external geopolitical reasons. Lacking this all-important source of income, manufacturing and service industries ground to a halt, and the currency collapsed. The resulting hyperinflation led to shortages of electricity, food, and medicine, and the government could no longer afford to pay for the social services it had been providing to the people. This led to social chaos, riots and widespread urban violence, such that today Venezuela has one of the highest rates of violent crime and murder in the world, leading to a mass exodus of more than four million people and creating a refugee crisis in neighboring states. By all rights, Venezuela should be one of the wealthiest countries in the hemisphere, given its natural beauty, resources, and geographical location, but dependency on a single economic sector in its planned economy has made it one of the poorest countries in the Americas.
This economic crisis has been described as among the worst to impact any nation during peacetime in decades [
1]. By 2018, more than 90% of the country’s population were living below the poverty line [
2]. Families could no longer meet basic needs, and by 2019, an average family could only afford about four-day supply of food per month [
3]. Over five million people (17% of the population) left the country between 2018 and October 2020 [
4] in the largest mass exodus in modern Latin American history [
5]. General public health has been negatively impacted by the lack of medical supplies and pharmaceuticals, the excessive cost of available medicines, and the mass exodus of healthcare personnel, as those with the means fled the crisis [
3,
6]. The healthcare system has also been severely imperiled by frequent electrical blackouts: For example, between November 2018 and February 2019, 79 inpatient deaths were directly attributed to a paucity of electricity in operating rooms or intensive care units [
7]. There was a dramatic increase in infectious diseases, including tuberculosis and malaria [
8], as well as chronic disorders, such as diabetes and cardiovascular disease [
9]. The crisis also affected mental health at all levels: The suicide rate increased 2.5 fold between 2015 and 2018 [
10]. The burden of these diseases on the population is compounded by the scarcity of food. When resources are thin, older adults have a high risk of being excluded from food distribution in favor of children and working members of the family. The paucity of food and supplies is even more extreme in the State of Zulia where Maracaibo is located, than in central Venezuela, even though Zulia was the most prosperous state in the country prior to 2014.
Research approach and study design of the Maracaibo aging study
The MAS, initiated in 1997, is a population-based longitudinal study of age-related disease, particularly memory disorders, which has been expanded to include cardiovascular, neurological, and other age-related outcomes. The general aim of the MAS is to describe and analyze the primary cognitive, cardiovascular, nutritional, and social determinants of aging in the local population. The baseline cohort included 2453 subjects residing in downtown Maracaibo, who were then over the age of 55 years. In 2011, an extended family of over 500 individuals from the nearby village of Santa Rosa de Agua was added to the MAS to assess white matter hyperintensities, a surrogate marker for small vessel disease that can be measured by neuroimaging.
The details of the study protocols have been described elsewhere [
11]. Briefly, a door-to-door survey was conducted to build a registry of all subjects 55 years or older, living in the target area. The initial sampling frame of the study was the Santa Lucia neighborhood, one of the 18 well-defined areas into which Maracaibo is divided for administrative purposes. This setting provided several advantages for an epidemiological study, such as a high density of houses per block. As it is one of the oldest areas of Maracaibo, a significant number of households with at least one older adult was expected. All subjects were included in a registry after giving informed consent. Every subject was invited to participate in the clinical, neuropsychological, and cardiovascular assessments.
A trained social worker visited the home of each subject and conducted a family interview. An informant (usually a spouse or adult child residing in the same home) knowledgeable about the participant’s daily activities and health issues, was identified and invited to confirm health details and medical history. Neuropsychiatric evaluations were performed by trained neurologists, psychiatrists, or internists, and neuropsychological testing was administered by psychologists. Routine laboratory tests were conducted, and blood was drawn and stored for future genetic analysis. Finally, participants received the results of the evaluations after a clinical consensus conference by the multidisciplinary team of the MAS. To assess age-related changes, the family interview and clinical assessment were repeated every three years in most cases. A community health worker was assigned to the hospital catchment areas to document fatal and non-fatal events among participants. Brain magnetic resonance imaging (MRI) and comprehensive ophthalmological assessment were performed in approximately 500 MAS participants during 2013 to 2016. In 2015, the study added an in-depth ophthalmological examination, including automated visual field testing and optical coherence tomography (OCT) to assess posterior segment pathologies.
Contributions of the Maracaibo aging study to science
The MAS demonstrated a high prevalence and incidence of Alzheimer’s disease and age-associated dementias in the Santa Lucía cohort [
12‐
14]. The study also measured non-traditional cardiovascular risk factors that were potentially relevant to dementia, such as plasma homocysteine levels [
15,
16]. Because high blood pressure is a known risk factor for dementia, including Alzheimer’s disease, the MAS reported the prevalence, treatment, and control rates of hypertension, as well as circadian dysregulations in blood pressure, and ultimately developed a novel index of blood pressure variability [
17]. Data from ten populations across the world provided evidence that social, economic, and education factors influence rates of preventable diseases [
18]. Of those populations, the MAS reported the second lowest human development index and the highest prevalence of hypertension. The MAS demonstrated the urgent need for capacity building in low resource settings to diagnose dementia and address the problems of affected individuals and their caregivers [
19,
20]. Due to the social accountability, community engagement, and capacity-building approaches of the MAS, many community resources have been established over the years, including a School for Non-Professional Caregivers of Older Adults [
21], and Workshops for Social, Physical and Cognitive Stimulation for people living with dementia, with a publicly available manual in Spanish [
22].
Methods to understand the impact and response to the humanitarian crisis
For this report, a qualitative approach was used for data collection and analysis to address two specific questions:
Collection of information from researchers, staff, and community members was facilitated by listening sessions, group or one-on-one discussions that took place in person, via teleconference, or through emails. In addition to the notes of these sessions, records and laboratory notebooks were reviewed for relevant information.