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主要依靠家庭照顾者来照顾他们。这些照顾者 是管理认知健康问题的关键第一道防线，但照顾者经常报告 对自己的角色不知所措，准备不足。针对照顾者的研究和干预通常 将他们的注意力集中在一个主要的照顾者上，通常是配偶或孩子，但大多数照顾者都是次要的 需要额外支持的照顾者，包括家人、朋友和健康专业人员。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，引发了谁将接替的问题 变成了许多年迈的美国人的看护角色。考虑到这些趋势，人们对 二级照顾者的流行率、角色或与健康相关的后果。在这份R21提案中，我们描述了 一项对阿尔茨海默病患者和老年患者照顾者网络的探索性研究 相关痴呆症(ADRD)，包括初级照料以外的非正式和专业照顾者 二元组。我们的目标是应用社交网络分析(SNA)中的见解来提高对 现实世界的照顾者网络，老年人应对记忆障碍依赖于日常生活。 目的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 照顾者网络在不同的社会和医疗背景下各不相同。目标2.分析两者之间的关联 照顾者网络特征和照顾者结果。结果包括质量和成本 护理、正规服务的使用、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了解，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具有优势。第一，改进了对 护理者网络将支持识别缺乏必要支持的高危个人。我们的方法可能 也有助于识别主要照护二联体之外的新干预目标。第二，忽视了 二次照顾者的劳动可能导致政策制定者高估了家庭成员的能力 承担日益沉重的国家照顾阿尔茨海默氏症的负担。对痴呆症的准确估计 劳动力对于评估老龄化国家医疗政策选择的成本至关重要。第三，我们希望 开发一种可适应其他疾病和治疗环境的护理网络科学模型。

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.