Barriers to health care access in a federally under-resourced system: experiences of Alzheimer’s disease and related dementias patients and caregivers in Puerto Rico
- 1University of Puerto Rico, Medical Sciences Campus
- 2RAND
Abstract
Background: Alzheimer’s disease and related dementias have reached crisis proportions in Puerto Rico, where the proportion of residents aged 65 and older has nearly doubled in the past decade, from 11 to 21%, making it one of the oldest populations in the Americas. Despite near-universal insurance coverage, families frequently struggle to translate potential access into actual care utilization, yet the systemic barriers driving this gap remain poorly documented.
Methods: This qualitative study examined barriers to dementia care access among individuals with Alzheimer’s disease and related dementias and their caregivers across Puerto Rico. Semi-structured interviews were conducted with 51 patient–caregiver dyads representing 19 municipalities between December 2023 and November 2024. Data was analyzed using a directed content analysis approach guided by Andersen’s Behavioral Model of Health Services Use, with barriers categorized across structural, process-level, and enabling resource domains.
Results: Extended waiting times, limited specialist access, and inadequate care coordination affected nearly all families. Structural underinvestment, particularly the absence of Medicaid long-term services and supports and restrictive Medicare Advantage networks, further constrained potential access. Despite 94% of participants being enrolled in Medicare Advantage, insurance coverage did not translate into realized access to needed services.
Conclusion: The universality of access barriers reflects systemic rather than individual-level failures in dementia care in Puerto Rico. Health systems serving older adults with dementia should prioritize open-access scheduling, integrated care coordination, and routine screening for social needs. Federal policy reforms, including Medicaid long-term services and supports parity for United States territories and expansion of dementia-specific care models, are essential to achieving equitable access for this population.
Related
- Online Peer Support Use Among Informal Caregivers of People Living With Alzheimer Disease or Related Dementias: National Cross-Sectional Web-Based Survey
- Potential links between PCOS/PMOS and Alzheimer disease and related dementias
- Patient-Reported Shared Decision-Making and Documented Advance Care Planning Among Adults With Alzheimer Disease and Related Dementias
- The effects of improved access to diabetes medications on risk of Alzheimer's disease and related dementias
- Performance of Claims-based Alzheimer’s Disease and Related Dementias Algorithms in Medicare Advantage and Fee-for-Service Populations
BibTeX
@article{torrescintron2026barriers,
title = {{Barriers to health care access in a federally under-resourced system: experiences of Alzheimer’s disease and related dementias patients and caregivers in Puerto Rico}},
author = {Mariela Torres-Cintrón and Alexandra Mendoza-Graf and Gabriela Castro and Gilberto Ramos-Valencia and Marielena Lara and Ivonne Z. Jiménez-Velázquez and Ilka Rios and Johan Hernandez-Santiago and Beverly Weidmer and Justin W. Timbie},
journal = {Frontiers in Public Health},
year = {2026},
month = oct,
doi = {10.3389/fpubh.2026.1923342},
url = {https://www.frontiersin.org/articles/10.3389/fpubh.2026.1923342/full},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Barriers to health care access in a federally under-resourced system: experiences of Alzheimer’s disease and related dementias patients and caregivers in Puerto Rico
AU - Mariela Torres-Cintrón
AU - Alexandra Mendoza-Graf
AU - Gabriela Castro
AU - Gilberto Ramos-Valencia
AU - Marielena Lara
AU - Ivonne Z. Jiménez-Velázquez
AU - Ilka Rios
AU - Johan Hernandez-Santiago
AU - Beverly Weidmer
AU - Justin W. Timbie
PY - 2026
DA - 2026/10/08
JO - Frontiers in Public Health
DO - 10.3389/fpubh.2026.1923342
UR - https://www.frontiersin.org/articles/10.3389/fpubh.2026.1923342/full
AB - Background: Alzheimer’s disease and related dementias have reached crisis proportions in Puerto Rico, where the proportion of residents aged 65 and older has nearly doubled in the past decade, from 11 to 21%, making it one of the oldest populations in the Americas. Despite near-universal insurance coverage, families frequently struggle to translate potential access into actual care utilization, yet the systemic barriers driving this gap remain poorly documented. Methods: This qualitative study examined barriers to dementia care access among individuals with Alzheimer’s disease and related dementias and their caregivers across Puerto Rico. Semi-structured interviews were conducted with 51 patient–caregiver dyads representing 19 municipalities between December 2023 and November 2024. Data was analyzed using a directed content analysis approach guided by Andersen’s Behavioral Model of Health Services Use, with barriers categorized across structural, process-level, and enabling resource domains. Results: Extended waiting times, limited specialist access, and inadequate care coordination affected nearly all families. Structural underinvestment, particularly the absence of Medicaid long-term services and supports and restrictive Medicare Advantage networks, further constrained potential access. Despite 94% of participants being enrolled in Medicare Advantage, insurance coverage did not translate into realized access to needed services. Conclusion: The universality of access barriers reflects systemic rather than individual-level failures in dementia care in Puerto Rico. Health systems serving older adults with dementia should prioritize open-access scheduling, integrated care coordination, and routine screening for social needs. Federal policy reforms, including Medicaid long-term services and supports parity for United States territories and expansion of dementia-specific care models, are essential to achieving equitable access for this population.
SN - 2296-2565
ER -