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.

项目摘要 阿尔茨海默病和相关痴呆症(ADRD)影响着500万美国人和1500万家庭 提供大部分ADRD长期护理的成员。此前ADRD对非正式家庭照料的研究有 专注于单一的(主要的)照顾者。人们对非正式家庭的数量和类型知之甚少 向ADRD患者提供的支持，反过来又与使用家庭资源的关系 不良健康事件，如住院、潜在可避免的住院(PAH)和正式的长期住院 定期护理支持(例如，养老院安置)。这些事件是医疗保险的主要原因， 医疗补助和自付家庭支出。理解非正式资源对一个人的作用 与ADRD的医疗保健利用一起生活势在必行，并有可能推动 加强ADRD护理的干预措施。在之前使用具有全国代表性的卫生与健康组织的分析中 与医疗保险有关的退休研究(HRS)表明，患有ADRD的人功能较差 与更长的非正式护理时间、每月更多的住院病人以及更高的风险相关 体验自掏腰包的疗养院支出。在我们先前研究的基础上，并回应 PAR-16-161，我们建议从两个方面评估非正式资源的纵向效应，即数量 活人使用的非正式照顾者(配偶、成年子女、其他家庭成员和虚构的亲属) ADRD及其非正式照顾者提供的总护理时间，对患有ADRD不良反应的人 健康事件(住院次数/住院时间、PAH和NH入院次数)。为了实现这些目标， 我们建议使用与Medicare、Medicaid和最低数据集(ADRD病例n=2,575)相关联的HRS。 研究的主要目的是：1)确定非正式照料(提供非正式照顾的人数 护理和提供护理的总时间)从发病到发病后12年的变化，并描述如何 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的过程中，提供的将会增加，与白人相比，非白人将有更多的非正式 由于有机会接触更多的家庭/虚构的亲属，家庭照顾者和获得非正式护理的时间更多)；以及 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：更多的非正式照顾者和更多的非正式工作时间 保健服务的提供与ADRD卫生保健利用的减少有关。我们进一步假设非白人 将得到比白人更多的非正式护理，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的结果，并将产生新的纵向全国代表性 非正式护理资源特征的证据，超出了我们对 主要照顾者和看护资源与卫生保健利用的联系。