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

BackgroundAlzheimer’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.MethodsThis 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.ResultsExtended 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.ConclusionThe 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.