Building Community and Research Engagement among Sexual and Gender Minority Older Adults at Risk for Alzheimer’s Disease and Related Dementias

摘要 到2030年，中国将有近600万50岁及以上的性少数和性别少数(SGM)老年人 认为自己是女同性恋者、男同性恋者、双性恋者、变性人和/或同性恋的美国人。这一数字将增加一倍以上 到2050年。目前，美国约有350,000名SGM老年人患有阿尔茨海默病和 相关痴呆症(ADRD)，预计到2030年将接近100万人。SGM老年人体验更多 与异性恋同龄人相比，健康差距更大。最近的几项研究表明，患病率更高 ADRD的风险因素，包括心血管疾病、高血压、糖尿病、抑郁症的较高发病率 或频繁精神困扰，主观认知能力下降。此外，SGM老年人不太可能 有非正式的照护支持，对于那些有照顾者的人，他们的照顾者往往无法获得包容性 服务和资源。来自SGM老年人的研究参与极其有限，而且稀少 研究表明，SGM老年人对从事研究感兴趣，但担心 需要解决缺乏包容性服务和不信任的问题，以改善对ADRD研究的参与， 包括临床试验和干预研究。为了克服参与ADRD的这些障碍-- 相关研究，这项研究将实施文化上适当的和包容性的招聘战略，旨在 与ADRD和SGM照顾者一起参与、招募和留住SGM老年人进行研究。这将是 通过(1)发展现有SGM组织、方案和 学术机构让SGM人员与ADRD和SGM ADRD照顾者一起参与临床研究；2) 建立可持续的SGM人研究登记册和ADRD和SGM照顾者， 实施和评估定制的招聘和参与计划，供ADRDC和临床使用 研究机构；以及3)制定招聘和保留特别机制的可复制模式 有ADRD和SGM照顾者的人在ADRD和老龄化相关研究中。我们的协作团队将 在国家老龄研究所老龄研究的战略方向上发表讲话“F-3：发展和 实施战略，增加不同人群参与研究的机会。“

Abstract By 2030, there will be nearly six million sexual and gender minority (SGM) older adults aged 50 and older in the U.S. who identify as lesbian, gay, bisexual, transgender, and/or queer. This number will more than double by 2050. Approximately 350,000 SGM older adults in the U.S. currently are living with Alzheimer's disease and related dementias (ADRD), with projections nearing one million by 2030. SGM older adults experience greater health disparities than their heterosexual counterparts. Several recent studies have shown a higher prevalence of risk factors for ADRD, including higher rates of cardiovascular disease, hypertension, diabetes, depression or frequent mental distress, and subjective cognitive decline. In addition, SGM older adults are less likely to have informal caregiving support and for those with caregivers, their caregivers often lack access to inclusive services and resources. Research participation from SGM older adults is extremely limited and the sparse research suggests that SGM older adults are interested in being engaged in research, but concerns regarding the lack of inclusive services and mistrust need to be addressed to improve participation in ADRD research, including clinical trials and intervention research studies. To overcome these barriers to participation in ADRD- related research, this study will implement culturally appropriate and inclusive recruitment strategies aimed at engaging, recruiting, and retaining SGM older adults with ADRD and SGM caregivers in research. This will be accomplished through (1) the development of a national network of existing SGM organizations, programs, and academic institutions to engage SGM people with ADRD and SGM ADRD caregivers in clinical research; 2) establishing a sustainable research registry of SGM people with ADRD and SGM caregivers by developing, implementing, and evaluating tailored recruitment and engagement programs, for use by ADRDc and clinical research institutions; and 3) the development of a replicable model for recruitment and retention of SGM people with ADRD and SGM caregivers in ADRD and aging-related research. Our collaborative team will address the National Institute of Aging's Strategic Directions for Research on Aging “F-3: Develop and implement strategies to increase inclusion of diverse populations in research.”