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  • Writer's pictureThe San Juan Daily Star

Alzheimer’s in Puerto Rico: A perfect storm of challenges and neglect

The Comunidad del Retiro in the Hill Brothers neighborhood of San Juan, Nov. 20, 2017. Puerto Rico’s demographic crisis amplifies the impact of Alzheimer’s on the island. (Ilana Panich-Linsman/The New York Times)

By Mariela Torres Cintrón

Special to The Star

My mother’s Alzheimer’s diagnosis drastically transformed not only her life but also the lives of our entire family. That shattering call from my sister eight years ago, relaying the difficult news, signaled the start of a journey fraught with emotional and financial hardships, compounded by the inadequacies of a health system in turmoil that fails to provide the essential support to patients and their loved ones.

As a healthcare researcher, I attended a recent conference of world-renowned professionals to address the mental health crisis in Puerto Rico, which underscored the growing concern over the state of healthcare services on the island. This concern is further amplified by the rising prevalence of Alzheimer’s disease and related dementias, which place an additional strain on an already struggling healthcare system.

But a one-time gathering of professionals is only a start. We need an all-hands-on-deck approach to this crisis, which is impacting a growing number of families just like mine.

Puerto Rico’s demographic crisis amplifies the impact of Alzheimer’s on the island. The large-scale migration of young people and the reduction of healthcare professionals and caregivers coincide with a rapid growth in the population over 65 years old, positioning Puerto Rico as having the 10th-highest proportion of elderly people globally, as deaths surpass births and older individuals live longer without family support systems. Also, 6.2% of people aged 45 and above exhibit subjective cognitive impairment, rendering Alzheimer’s the fourth leading cause of death on the island.

By 2025, a 50% increase is expected in the number of physicians and hospital institutions reporting cases to the Department of Health.

The steep costs associated with Alzheimer’s care place a significant financial strain on affected families in Puerto Rico. An Alzheimer’s diagnosis frequently results in the patient’s early retirement, which can pose a substantial financial burden and immense stress for the patient and family. In Puerto Rico, a cost model estimated that the average annual cost for a mid-stage Parkinson’s patient would be $64,914.53, suggesting comparably high costs for Alzheimer’s patients. Puerto Rico’s health secretary recently labeled the U.S. Department of Health and Human Services decision not to equalize Medicare Advantage payments for beneficiaries in Puerto Rico with those in the U.S. Virgin Islands as “violent discrimination.”

This lack of parity in medicare payments impacts the services patients receive, hinders the retention of medical personnel on the island, and underscores the ongoing challenges faced by Puerto Rico’s health system as it struggles to cope with the rising prevalence of Alzheimer’s and related dementias.

The shortcomings in Puerto Rico’s health system leave Alzheimer’s patients and their families abandoned without sufficient support. And this is aggravated because the primary care physicians in Puerto Rico face challenges in diagnosing Alzheimer’s in its early stages. A recent study found that only 35% of a sample of primary care physicians in Puerto Rico intended to diagnose Alzheimer’s at an early stage, and their confidence in their skills was the strongest predictor of their intention to diagnose early. The study also found that hours of training in Alzheimer’s management and years of medical practice experience correlated with the percentage of patients diagnosed.

Despite the Alzheimer’s action plan for Puerto Rico 2015-2025, which aims to enhance access to services and raise awareness, the current scarcity of qualified professionals, restricted availability of innovative treatments, and lack of comprehensive caregiver support highlight the deficiencies of a health system in disarray. These shortcomings force families to navigate uncertainty and challenges alone, grappling with the anguish of being unable to provide optimal care due to the system’s limitations.

While the Alzheimer’s action plan seeks to address some of these issues, more action is necessary to support those impacted by this devastating disease. Training and years of experience may be key for healthcare providers to have a positive outlook on their skills for early Alzheimer’s diagnosis. Interventions to dispel myths, reduce stigma, and bolster physicians’ confidence could help reduce diagnostic hesitancy. However, systemic changes are needed to truly alleviate the burden on patients and families.

The rising prevalence of Alzheimer’s in Puerto Rico, coupled with the demographic crisis, steep costs of care, diagnostic hesitancy among physicians, and shortcomings in the health system create a perfect storm that leaves patients and their families grappling with the challenges of this debilitating disease. The recent decision not to equalize Medicare payments in Puerto Rico with those in the U.S. Virgin Islands only exacerbates these challenges, highlighting the urgent need for action.

Addressing this growing public health crisis requires the support and resources essential to enhance the lives of those affected by Alzheimer’s in Puerto Rico. Encouraging early screening, improving access to diagnostic tools and comprehensive care, enhancing physician training and confidence, and rectifying the disparities in Medicare payments are crucial steps in this fight.

As I reflect on the challenges faced by Alzheimer’s patients and their families in Puerto Rico, my thoughts return to my own mother. She is currently waiting to turn 65, hoping that reaching this milestone will grant her access to Medicare, enabling her to undergo various medical tests and receive better care.

Her story is a poignant reminder of the urgent need for change — for her, and the thousands of others navigating this difficult journey.

Mariela Torres Cintrón is a Public Voices fellow of The OpEd Project and AcademyHealth and an assistant professor at UPR Medical Sciences Campus, School of Public Health.

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