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

项目摘要： 在生命的最后几年照顾患有阿尔茨海默病和相关痴呆(ADRD)的老年人 这种负担极其昂贵，而且家庭承担着很高的份额。成本和同比变化模式 支出可能与不利的护理质量和家庭财务结果有关，但到目前为止，个人- 关于支出及其对结果的影响的水平、全面的纵向数据尚未得到审查。 现有数据还表明，那些最没有能力应对的弱势群体面临着最大的财务风险， 这可能会导致结果上的进一步差异。因此，这个项目的目的是了解 医疗保健支出及其随时间在付款人和家庭中的分配情况，以及这种支出如何 导致老年痴呆症患者在护理质量和家庭结果方面的差异，特别是 在弱势和未得到充分服务的人群中。这项研究将汇集所有医疗保健数据 按支付者(即联邦医疗保险、医疗补助、个人、家庭和其他)的支出和比例，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。 具体地说，该项目将1)比较与健康相关的总费用和费用比例的年度模式 由Medicare、Medicaid、自付、非正式护理和其他付款人支付，在过去5年的每一年 患有或不患有ADRD的老年人以及弱势群体的生活；2)测试是否自付费用 超过家庭财富与护理质量指标(长期入住疗养院- 定期护理，≥3在生命的最后90天内跨护理地点过渡，非最佳临终关怀使用，即登记和>6 数月或3天，以及住院死亡)在患有或不患有ADRD的老年人和弱势群体中 以及3)检查超过家庭财富的自付成本是否与潜在的 不利的代际家庭财务结果(同居、照看和成年人的经济支持 在患有或不患有ADRD的老年人中以及在易受伤害的亚群中)。结果将直接 为卫生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，同时避免 家庭的贫困和种族和社会经济差距的加剧。

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.