Shining a Spotlight on Dementia with Lewy Bodies in Latin America

Abstract

A rapidly aging population presents significant health and social challenges, with one of the most pressing being the growing prevalence of chronic diseases, particularly age-related conditions like dementia. Already highly prevalent, dementia is projected to see a disproportionate global increase of approximately 300% in the coming decades, highlighting the urgency for effective interventions and support systems.¹

Research efforts must prioritize meeting the health demands of this aging population. Dementia is highly disabling and profoundly impacts not only the quality of life of individuals but also the well-being of their families. Furthermore, it places substantial economic strain on health systems.¹ Alzheimer's disease (AD) is the most prevalent neurodegenerative disease.² Significant global efforts have been made to improve its early detection and treatment. Innovations such as education campaigns, the development of blood-based biomarkers, and the recent approval of monoclonal antibodies represent noteworthy advancements.³

Dementia with Lewy Bodies (DLB), clinically characterized by progressive dementia, parkinsonism, visual hallucinations, REM sleep behavioral disorders, and fluctuating cognition, constitutes the second most common neurodegenerative dementia after AD. Differential diagnosis can be supported by imaging techniques such as dopamine transporter single-photon emission computed tomography (SPECT), iodine-123-metaiodobenzylguanidine (MIBG), and metabolic positron emission tomography (PET).⁴

Estimates suggest that DLB accounts for approximately 5% of the general population and up to 30% of all dementia cases.^{5, 6} Studies calculate that approximately 4.2% of dementia cases among older adults living in the community and 7.5% in specialized care settings are DLB.⁶ Individuals living with DLB experience a significantly worse clinical trajectory compared to those with AD or other types of dementia, including a more rapid functional decline, increased dependency, and a higher risk of complications, such as severe neuropsychiatric symptoms and motor impairments.^7-9 These factors contribute to a markedly reduced quality of life for individuals and their families. Mortality rates are also higher in DLB patients due to the complex interplay of cognitive, behavioral, and physical symptoms, as well as the increased susceptibility to comorbidities.¹⁰

The impact of DLB extends beyond the individual diagnosed with the disease, placing a significant burden on caregivers. Family members and healthcare providers often experience considerable emotional and physical stress due to the disease's unpredictable progression, frequent behavioral disturbances, and the intensive care needs of patients. Additionally, the uncertainty surrounding an accurate diagnosis can contribute to heightened anxiety and strain within the family. This strain is compounded by the lack of specialized resources and limited awareness of the condition, further complicating caregiving efforts.¹¹

From a systemic perspective, DLB imposes significant financial and logistical challenges on healthcare systems. Frequent hospitalizations, specialized care requirements, and the need for long-term management contribute to high costs.¹² Despite the growing recognition of DLB's prevalence and impact, the development of effective treatments remains a critical unmet need. Currently, no disease-modifying therapies exist, and treatment is largely symptomatic with limited evidence. The small number of ongoing clinical trials underscores the urgency for increased research investment to identify innovative therapeutic strategies.¹³ However, there is a growing interest in developing targeted treatments for DLB.

Despite research and healthcare efforts for DLB in developed regions like Europe and North America are substantial, they are not as extensive as those for AD. Although both conditions are neurodegenerative dementias, AD has historically received more attention in terms of research funding, public awareness, and healthcare resources.¹⁴

Demographic trends in Latin America demand urgent attention. The region is experiencing a rapidly growing aged population, leading to an increased number of individuals living with neurodegenerative diseases.¹⁵ This shift highlights the critical importance of addressing the unique health and social needs of this region for the future of global public health.

Here particularly, dementias other than AD, especially DLB, are frequently overlooked under the broader dementia umbrella.¹⁶ When reviewing the available evidence on DLB in specific Latin American populations, it becomes evident that DLB is systematically ignored in the dementia landscape. We believe this is due to the non-recognition of DLB, and non-collaborative work among disciplines, which consequently leads to significant underdiagnosis. Besides, the diagnostic criteria for DLB remain largely unknown, even within major neurology and dementia clinics. Consequently, cases are commonly misclassified as AD, or when psychiatric or motor symptoms predominate, then the disease is attributed to other conditions such as vascular dementia or Parkinson's disease dementia (PDD). The recent development of seeding amplification assay to diagnose α-synucleinopathy has led to an increased focus and discussion on the association between DLB and PDD.¹⁷ The lack of accurate diagnosis not only obstructs a proper understanding of the true prevalence of DLB in the population but also impedes the ability of healthcare systems to respond effectively.

We conducted a cross-sectional analysis at one of the largest memory clinics in Bogotá, Colombia, a major urban center in Latin America. By reviewing clinical records of all 5518 patients who attended the clinic from 2018 to 2022, we identified only 77 Lewy body dementia (LBD) diagnosed patients (40 PDD and 37 DLB), representing only 1.34% of the cohort. This notably low percentage underscores the significant diagnostic challenges in the region.¹⁸

Additionally, we carried out a systematic review of DLB research in Latin America, identifying 70 studies involving a total of 763 individuals diagnosed with the condition. Most studies employed a cross-sectional design. Brazil emerged as the leading contributor to research output with 52 studies, whereas other countries made significantly fewer contributions, with Colombia represented by only 2 studies. Despite covering diverse focus areas, the scarcity of studies, the small number of patients included per study, and methodological limitations highlight the underrepresentation of this population in DLB research.¹⁹

Colombia, with 52 million inhabitants, is the third most populated country in Latin America, and Bogotá, the capital, with 13 million inhabitants, is the sixth-largest city.²⁰ However, the healthcare system in Bogotá lacks access to essential confirmatory diagnostic tools for DLB, such as Dopamine Transporter (DAT), MIBG, and Fluorodeoxyglucose (FDG)PET scans. Currently, the tracers required to perform these tests are unavailable in Bogotá, and the situation is even more challenging in other cities. This deficit stems from systemic barriers, including the lack of necessary equipment and resources. Without these diagnostic tools, accurately identifying and managing DLB remains a significant challenge in the region.²¹

An illustrative example of large international efforts to study DLB is the European Dementia with Lewy Bodies Consortium (E-DLB), a network of expert European research centers focused on this disease. Participating centers collect longitudinal clinical and biomarker data to support multicenter research projects, including imaging (MRI, FDG-PET, and DAT-SPECT), EEG, and the collection of blood and cerebrospinal fluid.²²

Inspired by the E-DLB model, the Colombian Consortium for the Study of Lewy Body Dementia (COL-DLB) was established, bringing together efforts from three major university hospitals in three key cities. Despite current barriers related to diagnostic tools and funding, COL-DLB is fully operational and actively recruiting participants. This marks the first initiative in the region aimed at collecting prospective clinical and biomarker data, with the broader goal of expanding these efforts to other Latin American countries.²³

The outcomes of this major initiative to study DLB in Latin America could profoundly reshape how the disease is perceived, diagnosed, and treated, offering valuable insights into its impact across diverse ethnicities and cultures. Most importantly, it has the potential to improve the quality of life and prognosis for millions of people at risk of or living with the disease worldwide.

DLB is among the most underrecognized and understudied neurodegenerative diseases, particularly in Latin America. Despite being the second leading cause of neurodegenerative dementia, it lags far behind AD in research funding and healthcare attention and awareness, leading to critical gaps in understanding, diagnosis, and treatment. Without targeted efforts, millions of people will continue to face underdiagnosis and inadequate care. Limited access to diagnostic tools like DAT scans and FDG-PET in resource-limited regions further exacerbates the challenge.

Initiatives like the COL-DLB as a first attempt to grow structured DLB research in Latin America mark a significant step forward, addressing the unique needs of diverse populations and fostering global collaborations. However, to make a meaningful impact, increased funding and a shift from Alzheimer-focused research to a more inclusive approach are essential.

(1) Research project: A. Conception, B. Organization, C. Execution; (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique; (3) Manuscript Preparation: A. Writing of the First Draft, B. Review and Critique.

M.G.B.: 1A, 1B, 1C, 3A, 3B, 3C

F.B.R.: 1B, 3A, 3B, 3C

J.M.S.: 1B, 3B, 3C

C.C.A.: 3B, 3C

D.A.: 1A, 1B, 3B, 3C

This work was supported by the Norwegian government through Helse Vest (Western Norway Regional Health Authority) and the Norwegian Health Association. Additional support was provided by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust, in partnership with King’s College London.