World Dementia Council Update

1. INTRODUCTION

The Caribbean is a diverse region made up of many different countries, cultures, and languages. And, dementia presents a serious public health challenge across the region as a whole, with projections estimating a 155% increase in cases by 2050. Addressing this rapidly growing issue will require increased attention and coordinated efforts to improve diagnosis, advocacy, and more.

As a part of its commitment to advancing global efforts on dementia, the World Dementia Council (WDC) recently convened dementia experts to participate in virtual dialogues centered around dementia and the Caribbean. The first dialogue focused on strategies to increase dementia diagnosis and health system preparedness, while the second explored how partners across the region can build policy momentum, raise public awareness, and drive system‐level change in response to the Caribbean's rising dementia burden.

2. DIAGNOSIS AND HEALTH SYSTEM PREPAREDNESS DIALOGUE

The WDC dialogue on diagnosis and health system preparedness in the Caribbean occurred on April 8, 2025.

2.1. Introduction

Following opening remarks from Mr. Lenny Shallcross, Executive Director of the WDC, the dialogue was introduced by session co‐chairs, Dr. Ishtar Govia, CEO of Amagi Health Limited, and Dr. Roger Roberts, a neuropsychiatrist. They outlined the growing health challenges facing the Caribbean, particularly the escalating burden of dementia. As the burden of dementia grows, efforts around diagnosis and health system preparedness are becoming more important than ever, but these efforts also highlight difficult questions for dementia professionals: What does early or timely diagnosis mean when access to basic diagnostics is limited? How do we ensure equitable access to innovations in contexts where health systems are fragile and health data infrastructure is weak? Dr. Roberts also pointed to broader pressures facing the Caribbean health systems, including the aging population and competing chronic disease priorities that put a strain on already limited resources. Addressing dementia in this context will require regional collaboration, innovation, and a shared commitment to long‐term change.

2.2. Modeling costs and outcomes

Dr. Derek King, researcher at the London School of Economics, described his team's work on projecting costs and health care outcomes for people with dementia and their families. The model includes data on dementia prevalence, regional differences (urban vs. rural), informal caregivers, diagnostic rate, access to dementia services, and out‐of‐pocket costs. These elements inform projections on cost and health care outcomes. The implications of these projections are far‐reaching. This modeling helps to plan for future programs, aids in understanding the impact of current programs, and provides evidence and information on potential dementia interventions, including cost‐effectiveness, in the Caribbean and across the rest of the globe. The utility of this model highlights the importance of quality data and the need to make these data more accessible.

2.3. Improving the regulatory system

Ms. Rachelle Harris, a regulatory consultant, then described the importance of strengthening regulatory systems in the Caribbean, especially as it relates to improving access to quality medication across the region. She highlighted how a fragmented regulatory environment including under‐resourced authorities, variability in import protocol and adherence to international standards, and differing legal provisions on marketing authorization for medicines, not only discourage pharmaceutical investment in the region but also increase the likelihood of substandard or even dangerous medications entering the market. As new treatments for dementia become available, it is increasingly important that the region improve and streamline their regulatory processes. One option is through regulatory reliance, a best practice whereby smaller national authorities rely on decisions made by trusted regulators or platforms. To advance progress in the regulatory space in the Caribbean, Ms. Harris recommends political commitment to strengthening regulatory systems, improved stakeholder education, stronger industry engagement, and greater capacity building.

2.4. Strengthening supply chain and patient advocacy

Mr. James Walker, CEO of Aventa, the Caribbean's largest pharmaceutical distributor, discussed pharmaceutical regulation, supply chain, and advocacy in the Caribbean. Mr. Walker underscored the barriers distributors may face when working in the region including fragmented regulatory frameworks, underfunded authorities, and the widespread circulation of substandard and parallel‐traded medicines. To address these barriers, he advocated for cross‐country collaboration, streamlining regulatory processes, and called on countries to consider slightly increasing regulatory fees, which could help to bolster the capacity and training of local regulatory authorities.

Mr. Walker's team is also committed to improving the supply chain across the region. Smaller countries in the Caribbean often struggle with meeting the minimum order quantities required by major manufacturers, leading to inefficiencies and stock/expiration issues. To address this, Aventa's innovation lab has built the Dolphin Data Suite, a data aggregation platform aimed at improving medication forecasting and understanding retail trends to ensure appropriate quantities of medications are procured for each market.

Finally, Mr. Walker described Aventa's IMPACT program. IMPACT is a patient advocacy organization that has trained over 80 non‐profit leaders from the region on public relations, governance, finance, social media, and volunteer management with the goal to build capacity for patient advocacy across the region.

2.5. Genetic testing

Ms. Sylvia Keigwin, a clinical scientist specializing in genetics, highlighted the barriers and opportunities to expanding genetic testing in the Caribbean. Genetic diagnoses for many conditions across the region remain inaccessible due to a lack of public funding and infrastructure, limited local expertise, and unaccredited labs. Patients who are interested in genetic testing are instead advised to seek private testing, which is often too expensive.

Ms. Keigwin emphasized the key to increasing accessibility to genetic testing is investment in local workforce development and upskilling providers. Health care providers in the region require specialized training and education in genetics. Many providers are currently enthusiastic about genetics, but opportunities for training are lacking. Expanding genetic testing, both for dementia and other conditions more broadly, requires a trained workforce.

2.6. Health informatics

Mr. Douglas Halsall, chairman of Advanced Integrated Systems (AIS), described the capabilities of AIS across the Caribbean. AIS is a health informatics company that provides health care management tools including claims processing and EHR integration. Recently, AIS has developed a tool to address drug coding, a barrier in health informatics across the Caribbean.

The company developed the Caribbean Drug Code to standardize medication tracking across distributors, insurance, pharmacies, and more. This program allows for enhanced monitoring of medication quantities and orders, improves inventory management, and allows for electronic prescription approval, an important function for telemedicine users.

AIS also offers hospital solutions and operates three data centers. The company processes over 130,000 claims per day in Jamaica and enables health analytics, disease surveillance, and cost efficiency across the region. The infrastructure and abilities of AIS can serve as an example for other countries looking to implement integrated health informatics solutions.

2.7. Discussion

During the closing discussion, participants reflected on the gaps and opportunities related to brain health and dementia across the Caribbean. One participant noted frustration that many are not interested in addressing the disease because they believe it only affects the elderly. Others opined on the opportunity surrounding artificial intelligence (AI), especially within tracking medication and supply chain; however, it was noted that data digitalization must come first. Participants also noted the importance of advocating for increasing accessibility of genetic testing and biomarker availability. The dialogue closed with a call to continue building upon the Caribbean's existing infrastructure and local expertise to continue advancing regionally grounded brain health efforts.

3. POLICY, ADVOCACY, AND AWARENESS DIALOGUE

The WDC dialogue on policy, advocacy, and awareness in the Caribbean occurred on April 25, 2025.

3.1. Introduction

The second Caribbean dialogue focused on advancing regional strategies to address dementia policy, advocacy, and public awareness. The dialogue began with welcoming remarks from Mr. Shallcross followed by an introduction to the session by co‐chairs Dr. Govia and Dr. Horace Cox, Acting Director of Surveillance, Disease Prevention and Control at the Caribbean Public Health Agency (CARPHA). They highlighted the key topics to be discussed during the dialogue, including mobilizing political action around brain health, driving public health through public and private partnerships, and developing inclusive, culturally resonant advocacy to break down stigma. Unique perspectives from experts in academia, health care, innovation, and lived experience underscored the importance of coordinated action to address and improve brain health.

3.2. Perception, representation, and health equity

Mr. John Barnes, a former professional footballer and sporting icon, spoke candidly about systemic disparities in dementia care and diagnosis, particularly for Afro‐Caribbean populations. Pulling from personal and community‐level experiences, Mr. Barnes described how racialized perceptions contribute to misdiagnosis, mistreatment, and lack of access to quality care and support for those living with or showing signs of dementia. He also shared that, while high‐profile public figures can be helpful in raising awareness about these issues, he emphasized that real, sustainable change must come from the community. Engaging local authorities, institutions, and grassroots organizations is essential to addressing these inequities and improving treatment and care of people living with dementia.

3.3. Demographic shifts and data in the Caribbean

Dr. Ian Hambleton, professor of biostatistics at the University of West Indies, presented a demographic analysis of aging, dementia, and chronic disease trends across the Caribbean. Dr. Hambleton shared that, although life expectancy has seen a consistent rise in the Americas over the past few decades, Caribbean nations are lagging behind. To understand why, Dr. Hambleton shared data to illustrate that in some countries, such as Barbados, aging populations have driven a 32% rise in illness over 20 years, due to increases in dementia and age‐related conditions despite declines in cardiovascular diseases.

Dr. Hambleton stressed that, although public health initiatives are incredibly important to helping serve the aging population, these efforts alone cannot counterbalance the growing burden of dementia and other age‐related diseases. The region needs more data on this problem and more data on the different actions communities and governments are taking to tackle the problem. However, this presents a barrier as the Caribbean has the lowest level of health data availability and accessibility in the world. To address this problem, Dr. Hambleton is helping develop CaribData, a program to build regional capacity around data sharing and reuse. The program will feature infrastructure building, training, and advocacy all aimed at improving public health planning and response in the region.

3.4. Policy strategies for risk reduction

Dr. Seb Walsh, a researcher at the University of Cambridge, described strategies for reducing dementia risk at the population level. Dr. Walsh co‐leads Population‐Level Approaches to Dementia Risk Reduction (PLADRR), a research group committed to identifying the policy actions that can help reduce dementia risk. PLADRR is guided by key principles that include advocating for risk reduction and elevating it as a policy priority, taking a lifecourse approach to dementia, targeting risk across the full population, not just high‐risk groups, addressing structural and environmental barriers, and promoting equity.

PLADRR is currently exploring a number of population‐level interventions, including tobacco, alcohol, and sugar taxes; air pollution reduction measures; and workplace protections against excessive noise exposure. Applying these strategies along with increasing access and use of population‐level data and modeling provide a practical and sustainable path to reducing dementia risk across the region.

3.5. Health data ecosystems

Mr. Avinash Saxena, Vice President of Venture and Innovation at Novamed, explained the importance of quality health data and the need to develop data ecosystems where health data can be easily exchanged. He highlighted that, although data exist, it is often siloed and inaccessible, leaving it stranded and unable to be used to make impact. To address this challenge, Saxena and colleagues developed DAISY Health System.

DAISY is a digital health ecosystem that enables realtime, secure health data sharing between providers across clinics. DAISY is a cloud‐based, secure system centered around the patient, ensuring nothing is shared without their consent. Mr. Saxena emphasized that, while digital solutions like DAISY exist and show a lot of promise for the future of health data sharing, implementation of these programs are stalled by policy gaps, slow regulatory processes, and weak public‐private collaboration.

Mr. Saxena called for increased policy alignment and increased public–private partnerships to keep momentum going. Strengthening the infrastructure around health data exchange will empower patients and providers, leading to better care, accountability, and a more efficient health system.

3.6. Home health care innovation

Dr. Chelsea Garcia, CEO of LivHealth, described her innovative approach to home health care in the Caribbean. Dr. Garcia trained in Europe, the United States, and the Caribbean, and has gleaned learnings from her experiences in each of these areas to develop a highly effective home health care approach. Dr. Garcia and her multi‐disciplinary team create hyper‐personalized, detailed, and comprehensive care plans for each of their patients. These efforts have led to remarkable outcomes, including over 1400 hospital avoidances in 2024.

In addition to Dr. Garcia's innovative approach to home care, her team is leading initiatives aimed at maximizing the resources available to them in the Caribbean and supporting the broader community. These include the Living Waters Hospice Remed Program, which redistributes and donates unused medications, the LivHealth Charitable Foundation, which provides financial support to individuals on home hospice, and the Becoming Me workbook, which is designed to fight stigma against seeking counseling and support services. Dr. Garcia also created an in‐home palliative care training program for caregivers.

Dr. Garcia's work has not only reduced health care costs but, more importantly, has improved patient care, strengthened community ties, and offers a replicable framework for other communities facing limited resources and an aging population.

3.7. Discussion

During the discussion, participants stressed the importance of elevating the issue of dementia to younger generations, making sure they know it's important, relevant, and urgent to address. They also emphasized the need to engage policymakers and the public through media coverage and by framing dementia alongside other chronic diseases like cancer and diabetes. One participant questioned whether raising the retirement age could reduce dementia risk, as working may keep people more socially engaged; however, others noted the difficulty in showing causality. Concerns were also raised about potential resistance from industries, including food and beverage companies, regarding public health policies that target risk factors for dementia. Finally, participants underscored the importance of sustained support for caregivers and identified opportunities to better train both formal and informal caregivers. The dialogue concluded with remarks from the co‐chairs, sharing the need for ongoing, purposeful dialogue in which experts from across the Caribbean can exchange ideas, collaborate, and build momentum toward meaningful action on dementia.

To learn more about the WDC, please visit worlddementiacouncil.org or email Lenny Shallcross, Executive Director, at lenny.shallcross@worlddementiacouncil.com.