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

• 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
• 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' 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

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： 老年人阿尔茨海默病和相关痴呆症（ADRD）在生命的最后几年的护理是 费用极高，家庭承担了很大的负担。费用和逐年变化模式 支出可能与不利的护理质量和家庭财务结果有关，但迄今为止，个人- 关于支出及其对成果的影响的水平、全面、纵向数据尚未得到审查。 现有数据还表明，最没有能力科普的脆弱亚群体面临的财务风险最大， 这可能导致结果的进一步差异。因此，本项目旨在了解 这种医疗保健支出及其随时间推移在支付者和家庭中的分布，以及这种支出 导致老年痴呆症患者的护理质量和家庭结局的差异， 在弱势群体和得不到充分服务的人群中。这项研究将收集数据， 支付者的支出和比例（即，医疗保险、医疗补助、个人、家庭和其他），使用 具有全国代表性的健康和退休研究以及相关的医疗保险和医疗补助索赔数据。 具体而言，该项目将：1）比较与健康有关的总费用和费用比例的年度模式 由医疗保险，医疗补助，自付，非正式的支付，和其他付款人，在过去的5年中， 有或没有ADRD的老年人和弱势亚组的生活; 2）测试是否需要自付费用 超过家庭财富与护理质量指标（长期入住疗养院， 长期护理，在生命的最后90天内在护理中心之间转移≥3次，次优临终关怀使用，即入组>6 在有或无ADRD的老年人中以及在易受影响的人群中， 子群体;以及3）检查自付成本是否超过家庭财富与潜在的 不利的代际家庭经济结果（同居、同居和成年人的经济支持） 儿童）在有或无ADRD的老年人和脆弱亚组中的分布。结果将直接 为健康和社会政策提供信息，并帮助确保为患有ADRD的老年人提供高质量的护理， 家庭的贫困化以及种族和社会经济差距的加剧。