Informal Resources of Persons Living with Alzheimer's Disease and Related Dementias: Impact on Hospitalizations, Potentially Avoidable Hopsitalizations and Nursing Home Admissions

阿尔茨海默病和相关痴呆症患者的非正式资源：对住院治疗、可能可以避免的住院治疗和疗养院入院的影响

• 批准号: 9789802
• 负责人: Eric Jutkowitz
• 金额: $ 19.92万
• 依托单位: BROWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-30 至 2022-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9789802
• 关键词: Address; Admission activity; Adult Children; Affect; Aggressive behavior; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Americas; Behavioral Symptoms; Caregivers; Caring; Characteristics; Clinical Management; Communities; Data; Data Set; Dementia; Development; Disease; Disease Progression; Engineering; Ethnic Origin; Event; Expenditure; Family; Family Caregiver; Family Relationship; Family member; Friends; Goals; Health; Health and Retirement Study; Healthcare; Hospitalization; Hour; Individual; Inpatients; Intervention; Length; Link; Long-Term Care; Medicare; Medicare/Medicaid; Medicine; Methods; Nursing Assessment; Nursing Homes; Onset of illness; Outcome; Persons; Provider; Quality of life; Race; Recommendation; Reporting; Research; Resources; Risk; Role; Spouses; Surveys; Symptoms; Time; United States National Academy of Sciences; Vertebral column; base; care outcomes; care systems; caregiving; dementia care; dementia caregiving; demographics; effective intervention; ethnic difference; experience; family caregiving; family support; fictional works; functional decline; health care service utilization; informal care; informal caregiver; informal caregiving; informal support; innovation; member; nursing home length of stay; primary caregiver; racial and ethnic; response

Project Summary Alzheimer’s disease and related dementias (ADRD) affect >5 million Americans with >15 million family members providing the bulk of ADRD long-term care. Prior ADRD research on informal family caregiving has focused on a single (“primary”) caregiver. Very little is known about the number and type of informal family supports available to people living with ADRD, and in turn the relationship of the use of family resources to adverse health events such as hospitalizations, potentially avoidable hospitalizations (PAH), and formal long- term care support (e.g., nursing home [NH] placement). These events are leading causes of Medicare, Medicaid, and out-of-pocket family expenditures. Understanding the role of informal resources on a person living with ADRD’s health care utilization is imperative and has potential to inform the advancement of interventions to strengthen ADRD care. In a prior analysis using the nationally representative Health and Retirement Study (HRS) linked to Medicare we showed that poorer function of the person with ADRD was associated with more hours of informal caregiving, more inpatient admissions per month, and increased risk of experiencing an out-of-pocket nursing home expenditure. Building on our prior research and in response to PAR-16-161, we propose to evaluate the longitudinal effects of two aspects of informal resources, the number of informal caregivers (spouse, adult children, other family members, and fictive kin) used by persons living with ADRD and the total time of care provided by their informal caregivers, on a person with ADRD’s adverse health events (number/length of hospitalizations, PAH, and NH admissions). To accomplish these objectives, we propose to use HRS linked to Medicare, Medicaid, and the Minimum Data Set (ADRD cases n=2,575). Primary study aims are to: 1) determine how informal caregiving (number of individuals that provide informal care and total time providing care) changes from disease onset up to 12-years post onset and describe how these two factors vary by race/ethnicity (Hypothesis 1: the number of informal caregivers and hours of care provided will increase over the course of ADRD, and non-Whites compared to Whites will have more informal family caregivers and receive more hours of informal care due to having access to more family/fictive kin); and 2) determine how informal caregiving effects adverse health events in persons living with ADRD and determine how this effect differs by race/ethnicity (Hypothesis 2: more informal caregivers and more hours of informal care provision are associated with less ADRD health care utilization. We further hypothesize that non-Whites will receive more informal caregiving than Whites which will result in less formal care compared to Whites). This study has potential to result in important outcomes and will yield new longitudinal nationally representative evidence about the characteristics of informal caregiving resources, going beyond our understanding of only a primary caregiver and the link of caregiving resources to health care utilization.

项目概要 阿尔茨海默病及相关痴呆症 (ADRD) 影响着超过 500 万美国人和超过 1500 万个家庭 提供大部分 ADRD 长期护理的成员此前对非正式家庭护理进行了研究。 重点关注单个（“主要”）照顾者，但对非正式家庭的数量和类型知之甚少。 ADRD 患者可获得的支持，以及家庭资源的使用与 不良健康事件，例如住院治疗、潜在可避免的住院治疗 (PAH) 和正式的长期治疗 定期护理支持（例如，疗养院 [NH] 安置）。这些事件是 Medicare 的主要原因。 了解医疗补助和自付费用家庭支出。 适应 ADRD 的医疗保健利用势在必行，并且有可能促进 ADRD 的进步 在之前的分析中，我们使用了具有全国代表性的健康和预防干预措施来加强 ADRD 护理。 与医疗保险相关的退休研究 (HRS) 我们表明，ADRD 患者的功能较差 与更多的非正式护理时间、每月更多的住院病人以及增加的风险有关 根据我们之前的研究和回应，体验自付费用的疗养院支出。 PAR-16-161，我们建议评估非正式资源两个方面的纵向影响，即数量 居住者使用的非正式照顾者（配偶、成年子女、其他家庭成员和虚构亲属） ADRD 及其非正式护理人员提供的护理总时间，对 ADRD 不利的人 健康事件（住院次数/时间、PAH 和 NH 入院） 为了实现这些目标， 我们建议使用与 Medicare、Medicaid 和最小数据集相关的 HRS（ADRD 病例 n=2,575）。 主要研究目的是： 1) 确定非正式护理（提供非正式护理的人数）如何 护理和提供护理的总时间）从疾病发作到发病后 12 年的变化，并描述如何变化 这两个因素因种族/民族而异（假设 1：非正式护理人员的数量和护理时间 在 ADRD 过程中提供的信息将会增加，与白人相比，非白人将有更多的非正式信息 家庭照顾者，由于可以接触到更多的家人/虚构亲属而获得更多时间的非正式护理）； 2) 确定非正式护理如何影响 ADRD 患者的不良健康事件，并确定 这种影响如何因种族/民族而异（假设 2：更多的非正式护理人员和更多的非正式护理时间） 我们进一步发现，非白人的医疗服务使用率较低。 将比白人接受更多的非正式护理，这将导致与白人相比更少的正式护理）。 这项研究有可能产生重要成果，并将产生新的具有全国代表性的纵向研究 有关非正式护理资源特征的证据，超出了我们对非正式护理资源的理解 主要护理者以及护理资源与卫生保健利用的联系。