{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T16:38:34Z","timestamp":1790181514050,"version":"4.1.0"},"reference-count":19,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2025,1,16]],"date-time":"2025-01-16T00:00:00Z","timestamp":1736985600000},"content-version":"vor","delay-in-days":15,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Hopkins Economics of Alzheimer\u2019s Disease and Services (HEADS) Center","award":["NIA P30 AG066587"],"award-info":[{"award-number":["NIA P30 AG066587"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,1,13]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>Many older adults with personal care needs rely on paid caregivers to remain in the community (\u201chome care\u201d). Those without Medicaid or private long-term-care insurance must pay out-of-pocket for care. We used the Health and Retirement Study to identify the prevalence and financial burden of paying for home care out-of-pocket in 2002\u20132018, by income and dementia status. Over 600 000 people with personal care needs paid out-of-pocket for home care in a given year, 45% of whom have dementia. The quantity and cost of this care were substantial for people with dementia in particular: 51% of those with dementia paying out-of-pocket for home care spent \u2265$1000\/month. While the probability of paying out-of-pocket for home care increased sharply with income, 52% of people paying out-of-pocket for home care had incomes below 200% of the federal poverty line; this group faced high financial burdens of care. Policies aimed at easing the financial burden of home care are essential, particularly for low-income individuals with dementia who experience the greatest financial burden.<\/jats:p>","DOI":"10.1093\/haschl\/qxae180","type":"journal-article","created":{"date-parts":[[2025,1,16]],"date-time":"2025-01-16T13:18:27Z","timestamp":1737033507000},"source":"Crossref","is-referenced-by-count":8,"title":["Paying for home care out-of-pocket is common and costly across the income spectrum among older adults"],"prefix":"10.1093","volume":"3","author":[{"given":"Karen","family":"Shen","sequence":"first","affiliation":[{"name":"Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health , Baltimore, MD 21205 ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-5652-3249","authenticated-orcid":false,"given":"Yang","family":"Yang","sequence":"additional","affiliation":[{"name":"Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health , Baltimore, MD 21205 ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6270-4423","authenticated-orcid":false,"given":"Katherine A","family":"Ornstein","sequence":"additional","affiliation":[{"name":"Center for Equity in Aging, Johns Hopkins School of Nursing , Baltimore, MD 21205 ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0062-6356","authenticated-orcid":false,"given":"Regina A","family":"Shih","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, Emory Rollins School of Public Health , Atlanta, GA 30322 ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer M","family":"Reckrey","sequence":"additional","affiliation":[{"name":"Icahn School of Medicine at Mount Sinai , New York, NY 10029 ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,1,16]]},"reference":[{"issue":"8","key":"2025011613181605900_qxae180-B1","doi-asserted-by":"crossref","first-page":"1297","DOI":"10.1377\/hlthaff.2019.01800","article-title":"Informal and formal home care for older adults with disabilities increased, 2004\u201316: study examines changes in the rates of informal home care use among older adults with disabilities 2004 to 2016","volume":"39","author":"Van Houtven","year":"2020","journal-title":"Health Aff (Millwood)."},{"issue":"15","key":"2025011613181605900_qxae180-B2","doi-asserted-by":"crossref","first-page":"3355","DOI":"10.1007\/s11606-023-08262-9","article-title":"Paid care for people with functional impairment and serious illness: results from the Health and Retirement Study","volume":"38","author":"Reckrey","year":"2023","journal-title":"J Gen Intern Med."},{"issue":"10","key":"2025011613181605900_qxae180-B3","doi-asserted-by":"crossref","first-page":"1642","DOI":"10.1377\/hlthaff.2015.0536","article-title":"The disproportionate impact of dementia on family and unpaid caregiving to older adults","volume":"34","author":"Kasper","year":"2015","journal-title":"Health Aff (Millwood)."},{"key":"2025011613181605900_qxae180-B4","doi-asserted-by":"crossref","first-page":"105151","DOI":"10.1016\/j.jpubeco.2024.105151","article-title":"Who benefits from public financing of home-based long term care? Evidence from Medicaid","volume":"236","author":"Shen","year":"2024","journal-title":"J Public Econ."},{"issue":"5","key":"2025011613181605900_qxae180-B5","doi-asserted-by":"crossref","first-page":"754","DOI":"10.1093\/geront\/gnu013","article-title":"Toward a model long-term services and supports system: state policy elements","volume":"54","author":"Kaye","year":"2014","journal-title":"Gerontologist."},{"issue":"3","key":"2025011613181605900_qxae180-B6","doi-asserted-by":"crossref","first-page":"302","DOI":"10.1080\/08959420.2022.2081424","article-title":"Assessing disparities in Medicaid home-and community-based services: a systematic review","volume":"35","author":"Bercaw","year":"2023","journal-title":"J Aging Soc Policy."},{"key":"2025011613181605900_qxae180-B7","article-title":"The middle ground for fixing long-term care costs: the WISH act","author":"Cohen","year":"2021","journal-title":"Health Affairs 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older adults with disability: an observational study","volume":"170","author":"Wolff","year":"2019","journal-title":"Ann Intern Med."},{"key":"2025011613181605900_qxae180-B17","author":"Glied"},{"issue":"11","key":"2025011613181605900_qxae180-B18","first-page":"764","article-title":"Integrated care organizations: Medicare financing for care at home","volume":"22","author":"Davis","year":"2016","journal-title":"Am J Manag Care."},{"key":"2025011613181605900_qxae180-B19","author":"Abelson"}],"container-title":["Health Affairs 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