The Burden of Care for Adults with Dementia: Impact on Care Quality and Family Outcomes

成人痴呆症患者的护理负担：对护理质量和家庭结局的影响

基本信息

批准号：
9213704
负责人：
AMY STEVES KELLEY
金额：
$ 42.38万
依托单位：
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-05-15 至 2022-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9213704
关键词：
Address Admission activity Adult Adult Children Affect African American Alzheimer&apos s Disease Caring Cessation of life Cohort Studies Consumption Data Data Set Dementia Elderly Enrollment Ensure Family Financial Support Goals Health Health Care Costs Health Policy Health and Retirement Study Healthcare Heart Diseases Hispanics Hospitals Household Individual Knowledge Life Link Long-Term Care Long-Term Care for Elderly Malignant Neoplasms Medicare/Medicaid Nursing Homes Outcome Patient Care Patient Self-Report Patients Pattern Persons Policies Positioning Attribute Privatization Provider Quality of Care Resources Risk Services Site Social Policies Societies Subgroup Testing Time Underserved Population Unmarried Ursidae Family Vulnerable Populations care burden caregiving cost cost shifting exhaust exhaustion experience financial incentive health care disparity health care quality high school hospice environment informal care informal caregiving intergenerational multiple chronic conditions novel pressure racial disparity social socioeconomic disparity

项目摘要

Project Abstract: Care for older adults with Alzheimer's disease and related dementias (ADRD) during the final years of life is extremely costly and families carry a high share of this burden. Costs and shifting patterns of year-over-year spending are likely associated with adverse care quality and family financial outcomes, yet to date individual- level, comprehensive, longitudinal data on spending and its effect on outcomes have not been examined. Existing data also demonstrate that those vulnerable subgroups least able to cope are at greatest financial risk, which may result in further disparities in outcomes. Therefore, this project aims to understand the magnitude of this healthcare spending and its distribution across payers and families over time and how this spending contributes to disparities in care quality and family outcomes among older adults with dementia, particularly among vulnerable and underserved populations. The study will assemble data that capture total healthcare spending and proportion by payer (i.e., Medicare, Medicaid, individuals, families, and others), using the nationally-representative Health and Retirement Study and linked Medicare and Medicaid claims data. Specifically, the project will 1) Compare yearly patterns of total health-related costs and proportion of costs paid by Medicare, Medicaid, out-of-pocket, informal caregiving, and other payers, in each of the last 5 years of life among older adults with or without ADRD and across vulnerable subgroups; 2) Test if out-of-pocket costs exceeding household wealth are associated with indicators of care quality (nursing home admission for long- term care, ≥3 transitions across care sites in the last 90 days of life, suboptimal hospice use, i.e. enrollment >6 months or <3 days, and in-hospital death) among older adults with or without ADRD and across vulnerable subgroups; and 3) Examine if out-of-pocket costs exceeding household wealth are associated with potentially adverse intergenerational family financial outcomes (cohabitation, caregiving and financial support by adult children) among older adults with or without ADRD and across vulnerable subgroups. The results will directly inform health and social policy, and help to ensure high quality care for older adults with ADRD, while avoiding impoverishment of families and compounding of racial and socioeconomic disparities.

项目摘要：在生命的最后几年，护理老年人患有阿尔茨海默氏病和相关痴呆症（ADRD）非常昂贵，家庭承担着很大的负担。成本和年份的转移模式支出可能与不利护理质量和家庭财务成果有关，但迄今为止尚未研究有关支出及其对结果的影响的层次，全面的，纵向的数据。现有数据还表明，那些最不可应对的脆弱子组有很大的财务风险，这可能会导致结果的进一步差异。因此，该项目旨在了解大小随着时间的流逝，这种医疗保健支出及其在付款人和家庭之间的分配以及这种支出如何在痴呆症老年人中导致护理质量和家庭成果的差异，尤其是在脆弱和服务不足的人群中。该研究将组装捕获总医疗保健的数据付款人的支出和比例（即Medicare，Medicaid，个人，家庭等）使用全国代表性的健康和退休研究，并将Medicare和Medicaid索赔数据联系起来。具体而言，该项目将1）比较与健康相关成本的年度模式和成本比例在过去5年有或没有ADRD的老年人以及遍布脆弱的亚组的生活； 2）测试是否自付费用超出家庭财富与护理质量的指标有关（疗养院入学长期术语护理，≥3个跨护理网站的过渡，在生命的最后90天，次优临终关怀，即注册> 6 有或没有ADRD的老年人和弱势群体亚组； 3）检查是否有可能与家庭财富相关的自付费用是否可能与不利的代际家庭财务成果（成人同居，照料和财政支持儿童）在有或没有ADRD的老年人中以及跨越弱势亚组的老年人中。结果将直接告知健康和社会政策，并帮助确保ADRD的老年人高质量护理，同时避免家庭的贫困和种族和社会经济差异的复杂性。