Caregiving, Complex Family and Kinship Ties, and Alzheimer's Disease and Related Dementias (ADRD)

家庭和无报酬的照顾者为生活有限制的美国老年人提供了大部分援助， 美国阿尔茨海默病和相关痴呆症（ADRD）患者经历渐进式护理 需要和往往依赖多个家庭照顾者谁分担责任。此外，家庭已成为 近年来更加复杂--与法律的或生物的亲属相比， 关系-ADRD发生率较高的人群可能有更复杂的家庭和更高的风险， 亲属关系还有人担心，提供护理的规范可能因此而削弱。 虽然用于跟踪老年人健康和福祉的基于人口的老龄化调查 已经扩大了他们的亲属措施，包括目前的继家庭关系，没有一个提供全面的 从当前和过去的关系或自愿形式的亲属关系中评估家庭和亲属关系。 此外，老年人和他们的家庭成员提供了不同的Vantage位置，研究的影响， 家庭和亲属关系，这些联系可能从根本上不同的老年人生活在一起， ADRD。现有资源不允许充分理解中心问题：在什么情况下 复杂的家庭和亲属关系是否被激活，这一过程对与之生活在一起的人有何不同？ ADRD？要解决这一问题，需要两项创新：1）语言上的转变，以承认家庭， 亲属关系，包括简单的、复杂的、生物的、法律的和自愿的亲属关系（以下简称“家庭和亲属关系”）， 以及2）评估规范和照顾行为，承认照顾者和照顾接受者的观点。 如果不对这些联系和双重视角有更充分的理解， 关于家庭和亲属关系的景观提供给那些生活与ADRD，规范这些关系和 他们提供的实际护理，以及与这一人口中未得到满足的护理需求的联系。 拟议的培训和研究活动将使我能够过渡到一个独立的研究人员， 可以弥补这些差距。从目标1开始，我计划：a）获得有关痴呆症的知识， ADRD评估; B）评估目前对老年人复杂家庭和亲属关系的测量， 按ADRD状况编制国家估计数;以及c）按老年人的ADRD状况、家庭和 从照顾者和被照顾者的角度来看亲属关系和照顾行为。接下来，对于目标2，我将： 通过课程学习获得正式的调查方法知识和技能，B）对 按ADRD状态对老年人进行家庭护理规范的文献，c）进行焦点小组， 照顾者对有或没有ADRD的老年人制定家庭和亲属关系的措施， 规范，和d）进行调查项目的认知测试。最后，对于目标3，我将设计，现场，并分析一个 网络调查，与照顾者嵌入在复杂的家庭，他们的亲属关系，照顾规范和照顾行为。

Families and unpaid caregivers provide the majority of assistance to older Americans living with limitations in the U.S. Those living with Alzheimer’s Disease and Related Dementias (ADRD) experience progressive care needs and often rely on multiple family caregivers who share responsibilities. Moreover, families have become more complex in recent years – with more step ties, cohabitations, and voluntary kin versus legal or biological ties –and populations with higher rates of ADRD may be at higher risk for having more complex family and kinship ties. There are also concerns that norms about providing care may have weakened as a result. Although population-based aging surveys that are used to track the health and well-being of older adults have broadened their measures of kin to include current stepfamily ties, none provide a comprehensive assessment of family and kin ties from both current and past relationships or voluntary forms of kinship. Moreover, older adults and their family members provide different vantage points for studying implications of family and kinship ties for caregiving and these linkages may fundamentally differ for older adults living with ADRD. Available resources do not allow a full understanding of the central question: under what circumstances do complex family and kinship ties become activated and how does this process differ for individuals living with ADRD? To address this question will require two innovations: 1) a shift in language to recognize family and kinship ties including simple, complex, biological, legal, and voluntary kin (hereafter, “family and kinship ties”), and 2) assessment of norms and care behavior that recognize both caregiver and care receiver perspectives. Without a fuller understanding of these ties and dual perspectives, there remains a critical knowledge gap about the landscape of family and kinship ties available to those living with ADRD, norms for those ties and the actual care they provide, and linkages with unmet care needs in this population. The proposed training and research activities will allow me to transition to an independent researcher who can address these gaps. Starting with Aim 1, I plan to: a) Gain knowledge about dementia caregiving and ADRD assessment; b) Evaluate current measurement of complex family and kinship ties to older adults and produce national estimates by ADRD status; and c) Examine, by ADRD status of the older adult, family and kinship ties and care behaviors from caregiver and care recipient perspectives. Next, for Aim 2, I will: a) Acquire formal survey methodology knowledge and skills through coursework, b) Conduct a scoping review of the literature on family caregiving norms to older adults by ADRD status, c) Conduct focus groups with current caregivers to older adults with or without ADRD to develop measures of family and kinship ties and caregiving norms, and d) Conduct cognitive testing of survey items. Finally, for Aim 3, I will design, field, and analyze a web survey with caregivers embedded in complex families about their kin ties, care norms, and care behaviors.