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

家庭和无偿护理人员为生活受限的美国老年人提供大部分援助 美国阿尔茨海默病和相关痴呆症 (ADRD) 患者接受渐进式护理 需要并经常依赖多个分担责任的家庭照顾者。而且，家庭已经成为 近年来更加复杂——与合法或血缘关系相比，有更多的继父关系、同居关系和自愿亲属关系 ADRD 发生率较高的人群可能面临较高的家庭和复杂的风险 亲属关系。还有人担心提供护理的规范可能因此而减弱。 尽管基于人口的老龄化调查用于追踪老年人的健康和福祉 扩大了他们的亲属衡量标准以包括当前的继家庭关系，但没有一个提供全面的 根据当前和过去的关系或自愿形式的亲属关系评估家庭和亲属关系。 此外，老年人及其家庭成员为研究老年人的影响提供了不同的有利角度。 照顾家庭和亲属关系，而这些联系对于与家人一起生活的老年人来说可能根本不同 ADRD。现有资源无法充分理解核心问题：在什么情况下 复杂的家庭和亲属关系是否会被激活？对于患有这种疾病的个人来说，这个过程有何不同？ ADRD？要解决这个问题需要两项创新：1）改变语言以识别家庭和 亲属关系，包括简单、复杂、生物、法律和自愿亲属（以下简称“家庭和亲属关系”）， 2) 对规范和护理行为的评估，承认护理者和护理接受者的观点。 如果没有更全面地理解这些联系和双重观点，仍然存在严重的知识差距 关于 ADRD 患者的家庭和亲属关系状况、这些关系的规范以及 他们提供的实际护理，以及与该人群未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转变为一名独立研究员 可以弥补这些差距。从目标 1 开始，我计划： a) 获得有关痴呆症护理的知识和 ADRD 评估； b) 评估当前对老年人和老年人的复杂家庭和亲属关系的衡量 按 ADRD 状况生成国家估计值； c) 根据老年人、家庭和老年人的 ADRD 状况进行检查 从护理者和护理接受者的角度来看，亲属关系和护理行为。接下来，对于目标 2，我将：a) 通过课程学习获得正式的调查方法知识和技能，b) 进行范围界定审查 按 ADRD 状态划分的有关老年人家庭护理规范的文献，c) 开展焦点小组讨论，了解当前情况 患有或不患有 ADRD 的老年人的照顾者制定家庭和亲属关系以及照顾措施 规范，以及 d) 对调查项目进行认知测试。最后，对于目标 3，我将设计、部署和分析 对复杂家庭中的护理人员进行网络调查，了解他们的亲属关系、护理规范和护理行为。

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.