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

护理、复杂的家庭和亲属关系以及阿尔茨海默病和相关痴呆症 (ADRD)

• 批准号: 10447838
• 负责人: Sarah Elizabeth Patterson
• 金额: $ 13.22万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-01 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10447838
• 关键词: Address; Age; Aging; Alzheimer' s disease related dementia; American; Behavior; Biological; Caregivers; Caring; Complex; Contracts; Data; Disadvantaged; Elderly; Ethnic Origin; Eye; Family; Family Caregiver; Family Demographies; Family member; Focus Groups; Friends; Grant; Health; Hour; Individual; Inequality; Internet; Knowledge; Language; Legal; Literature; Measurement; Measures; Mentors; Minority; Nuclear; Personal Satisfaction; Phase; Population; Positioning Attribute; Process; Research Activity; Research Personnel; Resources; Review Literature; Risk; Role; Stepfamilies; Survey Methodology; Surveys; Testing; Training; Training Activity; United States National Institutes of Health; care recipients; caregiving; cognitive testing; dementia caregiving; design; disability; expectation; experience; family caregiving; high risk; innovation; member; novel strategies; population based; progressive care; skills; social health determinants

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.

家庭和无薪照顾者为生活在限制的年长美国人提供大多数援助 美国那些患有阿尔茨海默氏病和相关痴呆症（ADRD）的人经历了进步护理 需要并经常依靠多个责任承担的家庭护理人员。而且，家庭已经成为 近年来更复杂 - 具有更多的阶梯联系，同居和自愿性亲属与法律或生物学 领带 - ADRD率较高的人群可能会面临更复杂的家庭和 亲属关系。还担心提供护理的规范可能会削弱。 尽管用于跟踪老年人健康和福祉的基于人群的老龄化调查 扩大了对亲属的测量，以包括当前的继父领带，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，老年人及其家人为研究的含义提供了不同的优势 护理的家庭和亲属关系和这些联系可能与患有的老年人根本不同 adrd。可用资源不允许对中心问题有充分的理解：在什么情况下 使复杂的家庭和亲属关系被激活，并且与与之相处的个人有何不同 adrd？解决这个问题将需要两项创新：1）语言转移以认识家庭和 亲属关系在内，包括简单，复杂，生物学，法律和自愿性亲属（以下简单，“家庭和亲属关系”）， 2）评估既承认护理人员和护理接收者观点的规范和护理行为。 没有对这些关系和双重观点的充分了解，仍然存在批判性的知识差距 关于居住在ADRD的人，这些关系的规范以及的家庭和亲属关系的景观 他们提供的实际护理，并与该人群中未满足的护理需求联系。 拟议的培训和研究活动将使我能够过渡到独立研究人员 可以解决这些差距。从AIM 1开始，我计划：a）了解痴呆症护理和 ADRD评估； b）评估与老年人的复杂家庭和亲属关系的当前测量 通过Adrd身份制作了全国估算； c）检查老年人，家庭和 亲属关系和护理人员的护理行为和护理人员的观点。接下来，对于AIM 2，我将：a） 通过课程获得正式的调查方法论知识和技能，b）对 ADRD身份，关于老年人家庭护理规范的文献，c）与当前的焦点小组 有或没有ADRD的老年人的护理人员，以开发家庭和亲属关系的测量 规范和d）对调查项目进行认知测试。最后，对于AIM 3，我将设计，字段和分析 网络调查与复杂家庭中有关其亲属关系，护理规范和护理行为的护理人员进行调查。