Health Services Use and Outcomes in Older Adults with Dementia Living Undiagnosed or Unaware of Dementia

令人惊讶的是，在美国约570万阿尔茨海默病和相关痴呆症患者中，约有一半未被诊断出来。未确诊的痴呆症患者患有影响日常活动的认知障碍，但患者，家人和/或临床医生尚未发现。此外，在三分之一的确诊患者中，他们或他们的家人不知道痴呆症的诊断。因此，诊断并不总是转化为对重大疾病的认识和理解。虽然大多数痴呆症患者未被诊断或不知情，但在缺乏疾病改善治疗的情况下，早期诊断和披露是有争议的。美国预防服务工作组尚未发现早期痴呆症检测对患者预后有益的证据。这项建议旨在建立证据，证明早期诊断和意识，相关但不同的概念，是否可以改善结果。识别早期痴呆症诊断的潜在益处的一种新方法是识别当人们未被诊断或不知情时发生的负面结果。这种结果可以通过早期、透明的诊断和积极的护理来预防。该项目的重点是卫生服务的使用，特别是急诊室（艾德）访问，住院，住院治疗的结果，并作为结果，可能会受到缺乏痴呆症的诊断或认识的支出。艾德就诊和住院是常见的，并与诊断的痴呆症的不良结局相关;尚不清楚艾德和住院率和结局在未诊断的痴呆症中是否相似。事实上，未确诊的痴呆症患者在没有痴呆症检测，护理和支持的情况下可能会有更高的发病率，更差的结果和更大的支出。为了解决这一假设，该提案利用了国家健康和老龄化趋势研究，这是一个具有全国代表性的美国老年人队列，通过经过验证的访谈和基于评估的算法识别可能患有痴呆症的参与者。4，311名参与者的关联医疗保险索赔数据提供了检查未诊断或不知道诊断的可能痴呆症患者的纵向卫生服务结果的机会。痴呆诊断将包括阿尔茨海默病和相关疾病（例如血管性、混合性、路易体和额颞叶痴呆）。目的1调查痴呆症诊断或意识是否与四年以上的全因和潜在可预防的艾德就诊和住院风险相关，比较未诊断与诊断，不知道与知道诊断。目标2比较了年度医疗保健支出，住院参与者，年度住院时间，在家天数和30天的诊断和意识状态再入院。目的3确定未确诊或不知情者中艾德就诊和住院的预测因素。这些目标将有助于对未确诊的痴呆症的结局、早期透明诊断的潜在益处以及可能特别受益于早期诊断和积极医疗护理的亚组的有限了解。

PROJECT SUMMARY Astoundingly, about half of approximately 5.7 million persons living with Alzheimer’s disease and related dementias in the United States are undiagnosed. Persons with undiagnosed dementia are living with cognitive impairment that affects everyday activities but has not been detected by patients, families, and/or clinicians. Additionally, in one third of diagnosed patients, they or their families are unaware of a dementia diagnosis. Thus, diagnosis does not always translate to awareness and understanding of a significant condition. Though most individuals with dementia are undiagnosed or unaware, early diagnosis and disclosure is controversial in the absence of disease-modifying treatments. The United States Preventive Services Task Force has not yet found evidence of benefit for early dementia detection on patient outcomes. This proposal seeks to build evidence of whether early diagnosis and awareness, related but distinct concepts, could improve outcomes. A novel approach to identifying potential benefits of early dementia diagnosis is to identify negative outcomes occurring when persons are undiagnosed or unaware. Such outcomes could potentially be prevented through earlier, transparent diagnosis linked to proactive care. This project focuses on health services use, specifically emergency department (ED) visits, hospitalization, hospitalization outcomes, and spending as outcomes that may be affected by lack of dementia diagnosis or awareness. ED visits and hospitalization are common and associated with adverse outcomes in diagnosed dementia; it is not known whether ED and hospitalization rates and outcomes are similar in undiagnosed dementia. Persons with undiagnosed dementia may in fact have higher rates, worse outcomes, and greater spending in the absence of dementia detection, care, and support. To address this hypothesis, the proposal leverages the National Health and Aging Trends Study, a nationally representative cohort of older Americans that identifies participants with probable dementia through a validated interview and assessment-based algorithm. Linked Medicare claims data for 4,311 participants offers the opportunity to examine longitudinal health services outcomes in persons with probable dementia who are undiagnosed or unaware of the diagnosis. Dementia diagnoses will encompass Alzheimer’s disease and related disorders (e.g. vascular, mixed, Lewy body, and frontotemporal dementia). Aim 1 investigates whether dementia diagnosis or awareness is associated with risk of all-cause and potentially preventable ED visits and hospitalizations over four years, comparing undiagnosed versus diagnosed and unaware versus aware of diagnosis. Aim 2 compares annual healthcare spending, and among participants hospitalized, annual hospital length of stay, days at home, and 30-day readmissions by diagnosis and awareness status. Aim 3 identifies predictors of ED visits and hospitalizations among persons undiagnosed or unaware. These aims will contribute to limited knowledge of outcomes in undiagnosed dementia, potential benefits of earlier, transparent diagnosis, and subgroups who may particularly benefit from earlier diagnosis and proactive medical care.