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，将有近600万50岁及以上的性和性别少数（SGM）老年人， 美国同性恋、双性恋、变性者和/或酷儿。这个数字将增加一倍以上 到2050年美国目前约有35万SGM老年人患有阿尔茨海默病， 相关痴呆症（ADRD），预计到2030年将接近100万。SGM老年人的经验更大 与异性恋者相比，他们的健康差异更大。最近的几项研究表明， ADRD的危险因素，包括心血管疾病，高血压，糖尿病，抑郁症的发病率较高 或频繁的精神困扰和主观认知能力下降。此外，SGM老年人不太可能 对于那些有照顾者的人来说，他们的照顾者往往缺乏包容性的支持， 服务和资源。SGM老年人的研究参与非常有限， 研究表明，SGM老年人有兴趣从事研究，但对 需要解决缺乏包容性服务和不信任的问题，以提高对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， 这项研究将实施文化上适当和包容性的招聘战略， 参与，招募和保留SGM老年人与ADRD和SGM护理人员的研究。这将是 通过（1）发展现有SGM组织，计划的国家网络， 学术机构让SGM ADRD患者和SGM ADRD护理人员参与临床研究; 2） 建立一个可持续的研究登记册的SGM的人与ADRD和SGM的照顾者， 实施和评估定制的招募和参与计划，供ADRDc和临床 研究机构;以及3）开发可复制的招聘和保留SGM的模式 ADRD和衰老相关研究中的ADRD患者和SGM护理人员。我们的合作团队将 在国家老龄研究所老龄化研究战略方向“F-3：发展和 实施战略，增加研究中的不同人群的包容性。

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.”