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：
10152482
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 2023-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10152482
关键词：
Address Admission activity Adult Adult Children Affect African American Alzheimer&apos s disease related dementia Caring Cessation of life Cohort Studies Consumption Data Data Set Dementia Elderly Enrollment Ensure Family Financial Support Goals Health Health Care Costs Health Care Reform 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 care outcomes 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 vulnerability 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：对患有阿尔茨海默病和相关痴呆症 (ADRD) 的老年人在生命的最后几年进行护理是成本极其高昂，家庭承担了很大一部分成本和逐年变化的模式。迄今为止，支出可能与不良的护理质量和家庭财务结果有关有关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，那些最无力应对的弱势群体面临着最大的财务风险，这可能会导致结果进一步差异，因此，该项目旨在了解其严重程度。这种医疗保健支出的规模及其随时间的推移在付款人和家庭之间的分布以及这种支出如何导致患有痴呆症的老年人的护理质量和家庭结果存在差异，特别是该研究将收集涵盖总体医疗保健的数据。按付款人（即医疗保险、医疗补助、个人、家庭和其他）划分的支出和比例，使用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。具体来说，该项目将 1) 比较与健康相关的总成本和成本比例的年度模式在过去 5 年中，每年由 Medicare、Medicaid、自付费用、非正式护理和其他付款人支付患有或不患有 ADRD 的老年人以及弱势群体的生活 2) 测试是否需要自付费用；家庭财富超额与护理质量指标相关（长期护理人员入住疗养院）定期护理、在生命的最后 90 天内跨护理地点进行 ≥3 次转换、临终关怀使用次优，即入组人数 >6 患有或不患有ADRD的老年人以及弱势群体中的数月或<3天，以及院内死亡）子组；以及 3) 检查自付费用是否超过家庭财富是否与潜在相关不利的代际家庭财务结果（同居、成人的照顾和经济支持）儿童）、患有或不患有 ADRD 的老年人以及弱势群体中的结果将直接产生影响。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，同时避免家庭贫困以及种族和社会经济差距的加剧。

项目成果

期刊论文数量（8）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Fragmentation of care in the last year of life: Does dementia status matter?

DOI：
10.1111/jgs.17827
发表时间：
2022-08
期刊：
JOURNAL OF THE AMERICAN GERIATRICS SOCIETY
影响因子：
6.3
作者：
Nothelle, Stephanie;Kelley, Amy S.;Zhang, Talan;Roth, David L.;Wolff, Jennifer L.;Boyd, Cynthia
通讯作者：
Boyd, Cynthia

Health care utilization and costs in the years preceding dementia identification.

痴呆症确诊前几年的医疗保健利用和费用。

DOI：
10.1002/alz.13476
发表时间：
2023
期刊：
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子：
0
作者：
Kumar,RajG;Lund,EvanBollens;Ornstein,KatherineA;Li,Jing;Covinsky,KennethE;Kelley,AmyS
通讯作者：
Kelley,AmyS

Family Caregiving for Those With and Without Dementia in the Last 10 Years of Life.

在痴呆症患者生命的最后 10 年里，家庭对他们的照顾。