Designing a Culturally Tailored Formal Care Decision-Making Intervention for African American Dementia Dyads and Families

项目总结/摘要 非裔美国人（AA）老年人患阿尔茨海默病和相关疾病的风险更大。 与非拉丁白色老年人相比， 照顾这个种族群体的人AA照顾者主要是患有ADRD的AA患者的女儿 (AA艾滋病毒/艾滋病感染者）。这些成年女儿和她们的家人必须为她们的AA浏览正式的护理决定 艾滋病毒/艾滋病感染者，这与健康差距有关。这些健康差异导致AA PLWD经历 发病率更高，生活质量更差。没有专门针对指导AA的结构化计划 父母-成年女儿痴呆二人组和AA PLWD的家庭正式护理决策过程， 和AA照顾者倾向于在使用正式护理之前用尽非正式的护理来源。我的初步 研究集中在AA痴呆二联体（即，AA PLWD及其AA照顾者）发现AA非配偶 （主要是成年女儿）痴呆症的二人都经历了更差的生活质量比双方成员的AA 配偶照顾者痴呆症夫妇，支持我们对AA成年女儿照顾者的关注。此外，AA 护理人员认为，缺乏文化定制的正式护理是AA PLWD使用的障碍， 在为AA PLWD做出正式护理决定时，更多的家庭参与。与国家研究所保持一致 在老龄化的行为和社会科学高优先级痴呆症护理人员研究中，K23奖的目的是 以：1）检查影响（即，行为、社会文化和环境）对正式护理决定的影响- 2）描述AA PLWD及其AA成年女儿照顾者的生活质量， AA父母-成年女儿痴呆二人组成员的决策过程， 未来的正式护理使用AA PLWD，并探讨这些过程如何影响双方的生活质量 这些二人组的成员，和3）设计和测试AA父母-成人干预原型的可行性 女儿痴呆症夫妇和家庭，使他们能够制定量身定制的战略，以支持正式的护理， AA PLWD的决策过程。基于我作为一名具有ADRD专业知识的临床医生的培训 因此，我将：1）发展多学科决策模型的专业知识，这些模型可以适应 进行文化相关的研究AA痴呆症的夫妇和家庭，2）获得分析技能 定量、定性和混合方法的二元数据，用于干预开发; 3）获得专业知识 使用干预绘图和设计思维来开发、实施和评估 干预研究。我召集了一个优秀的导师团队（赫普本博士、鲍威尔博士和里昂博士）， Whitlatch，Dunbar，Higgins，and Yeager）。K23奖将为我提供必要的 基金会成为一个独立的护士科学家，致力于改善AA痴呆症的生活质量 这与NIA的使命“了解健康差距， 改善不同人群中老年人健康状况的战略。”

PROJECT SUMMARY/ABSTRACT African American (AA) older adults have a greater risk of developing Alzheimer's disease and related dementias (ADRD) when compared to non-Latinx White older adults, which increases the number of caregivers for this racial group. AA caregivers are predominantly daughters of AA persons living with ADRD (AA PLWDs). These adult daughters and their families must navigate formal care decisions for their AA PLWDs, which have associated health disparities. These health disparities result in AA PLWDs experiencing greater morbidity and worse quality of life. There are no structured programs specifically aimed at guiding AA parent-adult daughter dementia dyads' and families' formal care decision-making processes for AA PLWDs, and AA caregivers tend to exhaust informal caregiving sources before using formal care. My preliminary research focused on AA dementia dyads (i.e., AA PLWDs and their AA caregivers) found that AA non-spouse (primarily adult daughters) dementia dyads both experienced worse quality of life than both members of AA spouse caregiver dementia dyads, supporting our focus on AA adult daughter caregivers. In addition, AA caregivers identified a lack of cultural tailoring of formal care as a barrier for use by AA PLWDs and desired more family involvement when making formal care decisions for AA PLWDs. Aligned with the National Institute of Aging's Behavioral and Social Science high-priority dementia caregiver research, the K23 award aims are to: 1) examine the influences (i.e., behavioral, sociocultural, and environmental) on the formal care decision- making process and the quality of life of AA PLWDs and their AA adult daughter caregivers, 2) describe the decision-making processes of members of AA parent-adult daughter dementia dyads that affect current and future formal care use for AA PLWDs and explore how these processes influence the quality of life of both members of these dyads, and 3) design and test the feasibility of a prototype intervention for AA parent-adult daughter dementia dyads and families to enable them to develop tailored strategies to support the formal care decision-making process for AA PLWDs. Building on my training as a clinician with expertise in ADRD caregiving, I will: 1) develop expertise in multidisciplinary decision-making models that can be adapted to conduct culturally-relevant research within AA dementia dyads and families, 2) acquire skills in analyzing quantitative, qualitative, and mixed-methods dyadic data for intervention development, and 3) obtain expertise using intervention mapping and design thinking for the development, implementation, and evaluation of intervention studies. I have assembled an excellent team of mentors (Drs. Hepburn, Powell, and Lyons) and consultants (Drs. Whitlatch, Dunbar, Higgins, and Yeager). The K23 award will provide me with the necessary foundation to become an independent nurse scientist dedicated to improving the quality of life of AA dementia dyads and families, which ideally aligns with NIA's mission to “understand health disparities and develop strategies to improve the health status of older adults in diverse populations.”