Understanding the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer's Disease and Related Dementias.

摘要 在任何情况下，面对亲人的阿尔茨海默病和相关痴呆症(ADRD)都是具有挑战性的 情况，但当患者或他们的决策者是性或性行为时，可能更具挑战性 性别少数(SGM)。虽然SGM个人已经成为社会中更明显的一部分，但也有 越来越多的证据表明SGM老年人之间存在健康差距。尽管Alexia Torke博士的K24 提案为二次分析数据提供了支持，这些数据涉及情感、精神和宗教 代理决策方面，此数据集不够大，不足以包括SGM的数量 参与者需要对这一弱势群体的经历进行严格的研究。给定 老龄化人口中ADRD的风险，需要进一步收集主要数据以了解前景 对患有ADRD的SGM患者进行代用品护理，以开发干预措施，提高 决定和代孕母亲的经验。本补充建议的具体目的是了解 代理决策者对阿尔茨海默病和SGM阿尔茨海默病患者的需求和经验 相关痴呆，并制定和试行一项调查，评估SGM个人对 参与代孕决策过程。我们将首先对25-30名代孕者进行定性采访 最近关心过SGM个人或目前关心SGM个人的决策者 阿尔茨海默病和相关痴呆。我们将有目的地对混合的个体进行抽样，其中 代孕者是SGM或非SGM，但照顾SGM个人。然后，我们将根据以下调查结果制定一项调查 目标1关于代孕决策的需求和挑战。使用认知工具改进调查 采访了25名SGM老年人的小样本。这项研究的结果将用于1)验证 评估SGM患者对代孕决策过程的理解和参与度的调查 2)告知制定旨在提高参与的质量和数量的干预措施 在SGM社区中推进护理规划，以及3)更好地准备照顾SGM人的代理人。 本附录将进一步实现Torke博士最初提出的K24建议的目标，以指导下一代 代理决策研究者和进一步了解代理决策的机制 制作。Torke博士将指导Carey Candrian博士，Carey Candrian博士是一名研究人员，曾进行过先期护理研究 在SGM社区进行规划。

ABSTRACT Facing Alzheimer’s Disease and Related Dementia (ADRD) in a loved one is challenging under any circumstances, but may be even more challenging when the patient or their decision maker is a sexual or gender minority (SGM). While SGM individuals have become a more visible part of society, there is accumulating evidence of health disparities among SGM older adults. Although Dr. Alexia Torke’s K24 proposal has provided support for secondary analysis of data addressing the emotional, spiritual and religious aspects of surrogate decision making, this dataset is not large enough to include the number of SGM participants needed to conduct rigorous research on the experience of this vulnerable population. Given the risk of ADRD in the aging population, further primary data collection is needed to understand the perspectives of surrogates caring for SGM patients with ADRD, in order to develop interventions that improve the quality of decisions and the surrogate’s experience. Specific aims of this supplement proposal are to understand the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer’s Disease and Related Dementias and to develop and pilot test a survey assessing SGM individuals’ understanding of and engagement in the surrogate decision making process. We will first qualitatively interview 25-30 surrogate decision makers who have recently cared for SGM individuals or currently caring for SGM individuals with Alzheimer’s Disease and Related Dementias. We will purposefully sample a mix of individuals where the surrogate is a SGM or not but caring for a SGM individual. We will then develop a survey based on findings in Aim 1 regarding the needs and challenges of surrogate decision making. Refine the survey using cognitive interviewing with a small sample of 25 SGM older adults. Results of this study will be used to 1) validate the survey to asses understanding of and engagement in the surrogate decision making process for SGM patients, 2) inform the development of an intervention designed to increase the quality and quantity of engagement with advance care planning among SGM communities, and 3) better prepare surrogates caring for SGM people. This supplement will further the aims of Dr. Torke’s original K24 proposal, to mentor the next generation of surrogate decision making researchers and to further understand the mechanisms of surrogate decision making. Dr. Torke will mentor Dr. Carey Candrian, a researcher who has conducted studies in advance care planning in the SGM community.