Profiling the needs of dementia caregivers in a Brazilian cross-sectional study

Abstract

Introduction: Alzheimer's disease is an increasingly critical public health concern in aging populations. Characterized by progressive impairments, it can lead to dementia and significant dependence on family caregivers, who often face cognitive and behavioral challenges and heightened health risks. The study investigates the demands and unmet needs of these family caregivers using an electronic data-capture approach. Methods: This observational, descriptive, cross-sectional study was conducted in Brazil from February 2022 to January 2023. Non-professional dementia caregivers were surveyed through asynchronous digital data collection. A novel, context-specific questionnaire developed by an interdisciplinary expert group was administered, and a subset of randomly selected caregivers participated in focused interviews to enhance data quality. Results: Of 711 potential participants screened, 381 completed the questionnaire (53% response rate). Among them, 311 (82%) identified as non-professional caregivers. The results indicate that these caregivers often feel unprepared (46%), may have a negative self-perception of their role (39%), but also may feel rewarded with being a caregiver (44%). The primary needs expressed included additional assistance from others (87%) and emotional support (62%). Discussion: Findings indicate that care responsibilities were predominantly assumed by middle-aged female relatives, primarily in unpaid roles, with many providing more than 8 hours of direct care daily. A substantial proportion left their jobs to fulfill caregiving duties, underscoring the urgency of implementing policies that address the extensive needs of individuals with dementia and their caregivers. Given the complexity of dementia, public policies should be informed by rigorous situational analysis and delivered through targeted social, health, and educational programs that equip caregivers with effective management strategies and technologies while enhancing personalized emotional support systems.