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

IF 6.8 Q1 CLINICAL NEUROLOGY

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Pub Date : 2025-06-05 DOI:10.1002/trc2.70067

Alan Cronemberger Andrade, Mariel Carolina Montiel-Aponte, Ronaldo Cristiano Prati, Sheilla de Medeiros Correia Marin, Emanuela Bezerra Torres Mattos, Flavio Shigeo Yamamoto, Marcia Maria Pires Camargo Novelli, Walter Teixeira Lima Junior

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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.

Highlights

Lack of preparedness: Brazilian family caregivers often feel unprepared for their responsibilities (33%), which may lead to negative self-satisfaction with their role as caregivers (38%).
Employment impact: Nearly half of the respondents (43%) had to quit their jobs to take on caregiving responsibilities, and the vast majority (95%) did so without receiving any monetary compensation.
Need for support: Major complaints from family caregivers include an often unmet need for help from others (57%) and the emotionally tiring routine of caregiving (85%).
Duration of caregiving: The length of caregiving varied among participants, with 25% providing care for over 6 years. This highlights the long-term commitment often required in dementia cases.

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在巴西横断面研究中分析痴呆症护理人员的需求

阿尔茨海默病是老龄化人群日益严重的公共卫生问题。它以进行性损伤为特征，可导致痴呆和对家庭照顾者的严重依赖，而家庭照顾者往往面临认知和行为方面的挑战，并面临更高的健康风险。该研究使用电子数据捕获方法调查了这些家庭照顾者的需求和未满足的需求。方法：这项观察性、描述性、横断面研究于2022年2月至2023年1月在巴西进行。通过异步数字数据收集对非专业痴呆症护理人员进行调查。一个跨学科专家组开发了一份新颖的、具体情况的问卷，并随机选择了一组护理人员参加了重点访谈，以提高数据质量。结果在筛选的711名潜在参与者中，381人完成了问卷调查，应答率为53%。其中，311人（82%）被认定为非专业护理人员。结果表明，这些照顾者经常感到措手不及（46%），可能对自己的角色有消极的自我认知（39%），但也可能因照顾者而感到奖励（44%）。表达的主要需求包括来自他人的额外帮助（87%）和情感支持（62%）。讨论结果表明，照顾责任主要由中年女性亲属承担，主要是无偿的角色，许多人每天提供超过8小时的直接照顾。很大一部分人离开工作岗位履行护理职责，这凸显了实施政策以满足痴呆症患者及其照顾者的广泛需求的紧迫性。鉴于痴呆症的复杂性，公共政策应通过严格的情境分析来制定，并通过有针对性的社会、健康和教育项目来实施，这些项目为护理人员提供有效的管理策略和技术，同时加强个性化的情感支持系统。准备不足：巴西家庭照顾者经常对自己的责任感到措手不及（33%），这可能导致他们对照顾者角色的负面自我满意度（38%）。对就业的影响：近一半的受访者（43%）不得不辞去工作来承担照顾孩子的责任，而绝大多数（95%）的人在没有任何金钱补偿的情况下辞职。需要支持：家庭照护者的主要抱怨包括经常无法满足他人的帮助需求（57%）和照护的日常工作让人感到疲惫（85%）。照顾的持续时间：照顾的时间因参与者而异，25%的参与者提供超过6年的照顾。这突出了痴呆症病例通常需要的长期承诺。

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来源期刊

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Medicine-Psychiatry and Mental Health

CiteScore

10.10

自引率

2.10%

发文量

134

审稿时长

10 weeks

期刊介绍： Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.