Network Analysis of Family Caregiving for People Living with Dementia: A Survey of Caregiver Networks in Clinical and Community Settings

痴呆症患者家庭护理的网络分析：临床和社区环境中护理人员网络的调查

• 批准号: 10729771
• 负责人: William Ryne McConnell
• 金额: $ 29.02万
• 依托单位: FLORIDA ATLANTIC UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10729771
• 关键词: Adult; Aging; Alzheimer' s Disease; Alzheimer' s disease care; Alzheimer' s disease related dementia; American; Caregiver Burden; Caregiver research; Caregivers; Caring; Censuses; Characteristics; Child; Clinic; Clinical; Cognitive; Collaborations; Communication; Communities; Community Networks; Complex; Cost Analysis; County; Dementia; Elderly; Extended Family; Family; Family Caregiver; Family member; Florida; Friends; Health; Health Personnel; Health Policy; Health Professional; Household; Individual; Intervention; Interviewer; Light; Measurement; Measures; Medical; Memory Disorders; Mental Health; Methods; Modeling; Network-based; Outcome; Participant; Pathway Analysis; Patients; Persons; Policy Maker; Portraits; Prevalence; Primary Care; Professional Role; Proxy; Quality of Care; Reporting; Research; Research Personnel; Risk; Role; Sampling; Science; Services; Social Environment; Social Network; Social support; Spouses; Surveys; System; Variant; absorption; care burden; care coordination; care costs; care recipients; care systems; caregiving; caregiving outcomes; community organizations; community setting; coping; dementia caregiving; ethnic health disparity; family caregiving; family structure; health care disparity; health disparity; improved; indexing; informal caregiver; insight; member; novel; people of color; prevent; primary caregiver; racial health disparity; social; social relationships; theories; trend

Project Summary Older adults with Alzheimer’s disease rely on family caregivers for the majority of their care. These caregivers are a crucial first line of defense for management of cognitive health problems, but caregivers often report being overwhelmed and underprepared for their role. Research and interventions targeting caregivers often limit their focus to one primary caregiver, typically a spouse or child, but most caregivers enlist secondary caregivers for additional support including family, friends, and health professionals. Ongoing changes in family structure, including an increase in adults aging without spouses or children, raise questions about who will step into a caregiving role for many aging Americans. Considering these trends, little is known about the prevalence, roles, or health-related consequences of secondary caregivers. In this R21 proposal we describe an exploratory study of the caregiver networks of a sample of older adults living with Alzheimer’s disease and related dementias (ADRD), including informal and professional caregivers outside of the primary caregiving dyad. Our objective is to apply insights from social network analysis (SNA) to improve understanding of the real-world caregiver networks that older adults coping with memory disorders rely on day-to-day. Aim 1. Identify consequences of family structure for caregiver network participation and composition. We will examine how dementia caregiving tasks are shared among kin, non-kin, and professionals, and how caregiver networks vary across diverse social and medical contexts. Aim 2. Analyze associations between caregiver network characteristics and caregiving outcomes. Outcomes include the quality and costs of care, use of formal services, and primary caregiver burden and mental health. Developing our understanding of the family caregiver networks providing support to people living with ADRD has advantages for healthcare providers, policymakers, and researchers. First, improved characterization of caregiver networks will support identification of at-risk individuals who lack needed support. Our approach may also help to identify novel intervention targets outside of the primary caregiving dyad. Second, overlooking the labor of secondary caregivers may have led policymakers to overestimate the ability of family members to absorb the growing national burden of care for Alzheimer’s disease. Precise estimates of the dementia workforce are essential for evaluating the costs of healthcare policy options in an aging nation. Third, we hope to develop a network science model for caregiving that can be adapted to other illness and treatment contexts.

项目概要 患有阿尔茨海默病的老年人的大部分护理依赖于家庭护理人员。这些护理人员 是管理认知健康问题的重要第一道防线，但护理人员经常报告 对自己的角色不知所措且准备不足。经常针对护理人员的研究和干预措施 将他们的注意力限制在一名主要照顾者身上，通常是配偶或孩子，但大多数照顾者都会寻求第二照顾者 寻求额外支持的护理人员，包括家人、朋友和卫生专业人员。家庭的不断变化 结构，包括没有配偶或孩子的老年人的增加，引发了关于谁将继任的问题 成为许多美国人的护理角色。考虑到这些趋势，人们对 二级照顾者的患病率、角色或与健康相关的后果。在这个 R21 提案中，我们描述了 对患有阿尔茨海默病的老年人样本的照顾者网络进行的探索性研究 相关痴呆症 (ADRD)，包括初级护理之外的非正式和专业护理人员 二人组。我们的目标是应用社交网络分析 (SNA) 的见解来加深对社会网络分析的理解 老年人应对记忆障碍的日常护理所依赖的现实世界护理人员网络。 目标 1. 确定家庭结构对照顾者网络参与和组成的影响。 我们将研究如何在亲属、非亲属和专业人员之间分担痴呆症护理任务，以及如何 护理人员网络因不同的社会和医疗环境而异。目标 2. 分析之间的关联 护理人员网络特征和护理结果。结果包括质量和成本 护理、使用正规服务以及主要护理人员的负担和心理健康。 加深我们对为 ADRD 患者提供支持的家庭护理人员网络的了解 对于医疗保健提供者、政策制定者和研究人员来说具有优势。首先，改进了特征 护理人员网络将支持识别缺乏所需支持的高危个体。我们的方法可能 还有助于确定初级护理二元之外的新干预目标。二、俯瞰 二级照顾者的劳动可能导致政策制定者高估家庭成员的能力 承担国家日益增长的阿尔茨海默病护理负担。痴呆症的精确估计 劳动力对于评估老龄化国家医疗保健政策选择的成本至关重要。第三，我们希望 开发可适应其他疾病和治疗环境的护理网络科学模型。