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

项目摘要 患有阿尔茨海默病的老年人依靠家庭照顾者进行大部分护理。这些照顾者 是管理认知健康问题的关键第一道防线，但护理人员经常报告说， 被他们的角色所淹没和准备不足。针对照顾者的研究和干预措施往往 将他们的注意力集中在一个主要的照顾者身上，通常是配偶或孩子，但大多数照顾者都有次要的照顾者。 护理人员，包括家人，朋友和卫生专业人员的额外支持。家庭的持续变化 结构，包括没有配偶或子女的成年人老龄化的增加，提出了谁将接替的问题。 为许多上了年纪的美国人提供了一个退休的角色。考虑到这些趋势，人们对 二级照顾者的患病率、角色或健康相关后果。在此R21提案中，我们描述了 一项对老年痴呆症患者的护理者网络的探索性研究， 相关性痴呆（ADRD），包括初级保健以外的非正式和专业护理人员 二分体我们的目标是应用社会网络分析（SNA）的见解，以提高对 老年人应对记忆障碍的日常依赖的现实世界护理网络。 目标1.确定家庭结构对照顾者网络参与和组成的影响。 我们将研究痴呆症诊断任务是如何在亲属、非亲属和专业人员之间分担的，以及 照顾者网络在不同的社会和医疗环境中各不相同。目标二。分析关联 照顾者网络特征和照顾结果。结果包括质量和成本 护理、正规服务的使用以及主要照顾者的负担和心理健康。 发展我们对家庭照顾者网络的理解，为ADRD患者提供支持 对医疗保健提供者、政策制定者和研究人员都有好处。第一，改进表征 护理人员网络将支持查明缺乏所需支助的高危个人。我们的方法可以 还有助于确定主要干预二元体之外的新干预目标。第二，俯瞰 二级照顾者的劳动可能导致决策者高估了家庭成员的能力， 承担国家日益增长的阿尔茨海默病护理负担。对痴呆症的精确估计 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。三是希望 开发一个网络科学模型，以适应其他疾病和治疗环境。

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.