Paid Help and Caregiving Experiences of Black Caregivers of Community-Dwelling Older Adults

References

• 2015 Poverty Guidelines. (2015). U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation.
   Google Scholar
• Alliance, F. C. (2006). Caregiver assessment: Voices AND views from the field volume II. A National Consensus Development Conference National Consensus Development Conference.
   Google Scholar
• American Association of Retired Persons, & National Alliance for Caregiving. 2020. Caregiving in the United States 2020. doi:10.26419/ppi.00103.001
   Google Scholar
• Association, A. s. (2020). Alzheimer’s disease facts and figures. https://alz-journals.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/alz.12068?download=true
   Google Scholar
• Beach, S. R., & Schulz, R. (2017). Family caregiver factors associated with unmet needs for care of older adults. Journal of the American Geriatrics Society, 65(3), 560–566. doi:10.1111/jgs.14547
   PubMed Web of Science ®Google Scholar
• Beach, S. R., Schulz, R., Friedman, E. M., Rodakowski, J., Martsolf, R. G., & James, A. E. (2020). Adverse consequences of unmet needs for care in high-need/high-cost older adults. In, 75, 459–470.
   Google Scholar
• Bonds, K. L., & Karen, S. (2018). Formal service use by African American individuals with dementia and their Caregivers: An integrative review. Journal of Gerontological Social Work, 44(6), 33–39.
   Google Scholar
• Burgio, L., Stevens, A., Guy, D., Roth, D. L., & Haley, W. E. (2003). Impact of two psychosocial interventions on white and African American family caregivers of individuals with dementia. The Gerontologist, 43(4), 568–579. doi:10.1093/geront/43.4.568
   PubMed Web of Science ®Google Scholar
• Chen, H.-F., Homan, S., Carlson, E., Popoola, T., & Radhakrishnan, K. (2017). The impact of race and neighborhood racial composition on preventable readmissions for diabetic medicare home health beneficiaries. Journal of Racial and Ethnic Health Disparities, 4(4), 648–658. doi:10.1007/s40615-016-0268-2
   PubMed Web of Science ®Google Scholar
• Chow, J.-C.-C., Auh, E. Y., Scharlach, A. E., Lehning, A. J., & Goldstein, C. (2010). Types and sources of support received by family caregivers of older adults from diverse racial and ethnic groups. Journal of Ethnic and Cultural Diversity in Social Work, 19(3), 175–194. doi:10.1080/15313204.2010.499318
   Google Scholar
• DeMatteis, J. F. V. A., & Kasper, J. D. (2016). National health and aging trends study round 5 Sample design and selection. NHATS technical paper #16. www.nhats.org
   Google Scholar
• Desin, P. H. A., Caban-Holt, A. M., Abner, E. L., Van Eldik, L. J., & Schmitt, F. A. (2016). Factors associated with unmet needs among African-American dementia care providers. Journal of Gerontology & Geriatric Research, 05, 01. doi:10.4172/2167-7182.1000267
   Google Scholar
• Fabius, C. D., Thomas, K. S., Zhang, T., Ogarek, J., Shireman, T. I., Ogarek, J., … Shireman, T. I. (2018). Racial disparities in Medicaid home and community-based service utilization and expenditures among persons with multiple sclerosis. BMC Health Services Research, 18(1), 1–9. doi:10.1186/s12913-018-3584-x
   PubMedGoogle Scholar
• Fabius, C. D., Wolff, J. L., & Kasper, J. D. (2020). Race differences in characteristics and experiences of Black And White caregivers of older Americans. The Gerontologist, 60(7), 1244–1253. doi:10.1093/geront/gnaa042
   PubMed Web of Science ®Google Scholar
• Fortinsky, R. H., Gitlin, L. N., Pizzi, L. T., Piersol, C. V., Grady, J., Robison, J. T., & Molony, S. (2016). Translation of the care of persons with dementia in their environments (COPE) intervention in a publicly-funded home care context: Rationale and research design. Contemporary Clinical Trials, 49, 155–165. doi:10.1016/j.cct.2016.07.006
   PubMed Web of Science ®Google Scholar
• Fortinsky, R. H., Gitlin, L. N., Pizzi, L. T., Piersol, C. V., Grady, J., Robison, J. T., … Wakefield, D. (2020). Effectiveness of the care of persons with dementia in their environments intervention when embedded in a publicly funded home- and community-based service program. Innovation in Aging, 4(6), igaa053. doi:10.1093/geroni/igaa053
   PubMed Web of Science ®Google Scholar
• Freedman, V. A., & Spillman, B. C. (2014). Disability and care needs among older Americans. Milbank Quarterly, 92(3), 509–541. doi:10.1111/1468-0009.12076
   PubMed Web of Science ®Google Scholar
• Freedman, V. A. D., & Kasper, J. D, J. (2019). National Study of Caregiving (NSOC) I-III Weighting Guide. www.nhats.org
   Google Scholar
• Giovannetti, E. R., & Wolff, J. L. (2010). Cross-survey differences in national estimates of numbers of caregivers of disabled older adults. Milbank Quarterly, 88(3), 310–349. doi:10.1111/j.1468-0009.2010.00602.x
   PubMed Web of Science ®Google Scholar
• Gorges, R. J. S. P., & Konetzka, R. T. (2019). A national examination of long-term care setting, outcomes, and disparities among elderly dual eligibles. Health Affairs, 38(7), 1110–1118. doi:10.1377/hlthaff.2018.05409
   PubMed Web of Science ®Google Scholar
• Joynt Maddox, K. E., Chen, L. M., Zuckerman, R., & Epstein, A. M. (2018). Association between race, neighborhood, and Medicaid enrollment and outcomes in medicare home health care. Journal of the American Geriatrics Society, 66(2), 239–246. doi:10.1111/jgs.15082
   PubMed Web of Science ®Google Scholar
• Kasper, J. D., Steinbach, U., & Andrews, J. (1994). Caregiver role appraisal and caregiver tasks as factors in ending caregiving. Journal of Aging and Health, 6(3), 397–414. doi:10.1177/089826439400600307
   PubMedGoogle Scholar
• Kasper, J. D., Freedman, V. A., & Spillman, B. (2013). Classification of persons by dementia status in the national health and aging trends study. Technical Paper #5. www.NHATS.org
   Google Scholar
• Kasper, J. D. W., Jennifer, L., & Skehan, M. (2018). Care arrangements of older adults: What they prefer, what they have, and implications for quality of life. The Gerontologist, 59(5), 845–855. doi:10.1093/geront/gny127
   Web of Science ®Google Scholar
• Kasper, J. D. F., & Vicki, A. (2019). National health and aging trends study (NHATS) user guide: Rounds 1-8 final release. www.NHATS.org.
   Google Scholar
• Kelly, K. W. Wolfe, N., Gibson, M. J., & Feinberg, L. (2013). Listening to family caregivers: The need to include family caregiver assessment in Medicaid home-and-community-based service waiver programs. Washington, DC: AARP Public Policy Institute.
   Google Scholar
• Kim, G., Allen, R. S., Wang, S. Y., Park, S., Perkins, E. A., & Parmelee, P. (2018). The relation between multiple informal caregiving roles and subjective physical and mental health status among older adults: Do racial/ethnic differences exist? The Gerontologist. doi:10.1093/geront/gnx196
   Web of Science ®Google Scholar
• Kuzuya, M., Enoki, H., Hasegawa, J., Izawa, S., Hirakawa, Y., Shimokata, H., & Akihisa, I. (2011). Impact of caregiver burden on adverse health outcomes in community-dwelling dependent older care recipients. The American Journal of Geriatric Psychiatry, 19(4), 382–391. doi:10.1097/jgp.0b013e3181e9b98d
   PubMed Web of Science ®Google Scholar
• Miyawaki, C. E. (2016). Caregiving practice patterns of Asian, Hispanic, and Non-Hispanic White American family caregivers of older adults across generations. Journal of Cross-Cultural Gerontology, 31(1), 35–55. doi:10.1007/s10823-016-9281-5
   PubMed Web of Science ®Google Scholar
• Montaquila, J., Freedman, V., Edwards, B., & Kasper, J. (2012). National health and aging trends study round 1 sample design and selection. NHATS technical paper #1. www.NHATS.org
   Google Scholar
• Montgomery, R. K. & Kwak, J. (2008). TCARE: Tailored caregiver assessment and referral. Journal of Social Work Education, 44(sup3), 59–64. doi:10.5175/JSWE.2008.773247713
   Google Scholar
• Montgomery, R. J. V., Kwak, J., Kosloski, K., & O’Connell Valuch, K. (2011). Effects of the TCARE(R) intervention on caregiver burden and depressive symptoms: Preliminary findings from a randomized controlled study. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 66B(5), 640–647. doi:10.1093/geronb/gbr088
   Google Scholar
• Musumeci, M. C., & O’Malley Watts, M, P. (2019). Key questions about Medicaid home and community-based service waiver waiting lists. San Francisco: Henry J. Kaiser Family Foundation.
   Google Scholar
• National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. National Academies Press.
   Google Scholar
• Ng, T., Stone, J., & Harrington, C. (2015). Medicaid home and community-based services: How consumer access is restricted by state policies. Journal of Aging & Social Policy, 27(1), 21–46. doi:10.1080/08959420.2015.969078
   PubMed Web of Science ®Google Scholar
• Nkimbeng, M. J., & Parker, L. J. (2021). Diverse, culturally rich approaches to family care in the United States. (Pp, 43-69(Elsevier). doi:10.1016/b978-0-12-813898-4.00002-6
   Google Scholar
• Parker, L. J., & Fabius, C. D. (2020). Racial differences in respite use among Black and White caregivers for people living with dementia. Journal of Aging and Health, 32(10), 1667–1675. doi:10.1177/0898264320951379
   PubMed Web of Science ®Google Scholar
• Parker, L. J., & Gitlin, L. N. (2021). Does adult day service use improve well-being of Black caregivers of people living with dementia? Innovation in Aging, 5(4). doi:10.1093/geroni/igab037
   PubMed Web of Science ®Google Scholar
• Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. doi:10.1093/geront/30.5.583
   PubMed Web of Science ®Google Scholar
• Pinquart, M., & Sörensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. In, 58, 112–128.
   Google Scholar
• Reckrey, J. M., Boerner, K., Franzosa, E., Bollens-Lund, E., & Ornstein, K. A. (2021). Paid caregivers in the community-based dementia care team: Do family caregivers benefit? Clinical Therapeutics, 43(6), 930–941. doi:10.1016/j.clinthera.2021.03.022
   PubMed Web of Science ®Google Scholar
• Reckrey, J. M., Watman, D., Tsui, E. K., Franzosa, E., Perez, S., Fabius, C. D., & Ornstein, K. A. (2022). “I am the home care agency”: The dementia family caregiver experience managing paid care in the home. International Journal of Environmental Research and Public Health, 19(3), 1311. doi:10.3390/ijerph19031311
   PubMed Web of Science ®Google Scholar
• Robison, J. S., Noreen, Fortinsky, Richard, H., Gruman, & Cynthia. (2014). Long-term supports and services planning for the future: Implications from a statewide survey of Baby Boomers and older adults. The Gerontologist, 54(2), 297–313. doi:10.1093/geront/gnt094
   PubMed Web of Science ®Google Scholar
• Roche, M., Higgs, P., Aworinde, J., & Cooper, C. (2021). a review of qualitative research of perception and experiences of dementia among adults from Black, African, and Caribbean background: What and whom are we researching? The Gerontologist, 61(5), e195–e208. doi:10.1093/geront/gnaa004
   PubMed Web of Science ®Google Scholar
• Roth, D. L. D.-A., Peggye, H., Jin, G., Alden, L., & Gitlin, L. N. (2015). Positive aspects of family caregiving for dementia: Differential item functioning by race. Journals of Gerontology: Psychological Sciences, 70(6), 813–819. doi:10.1093/geronb/gbv034
   Google Scholar
• Scharlach, A. E., Kellam, R., Ong, N., Baskin, A., Goldstein, C., & Fox, P. J. (2006). Cultural attitudes and caregiver service use. Journal of Gerontological Social Work, 47(1–2), 133–156. doi:10.1300/j083v47n01_09
   PubMedGoogle Scholar
• Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71(1), 635–659. doi:10.1146/annurev-psych-010419-050754
   PubMed Web of Science ®Google Scholar
• Shippee, T. P., Fabius, C. D., Fashaw-Walters, S., Bowblis, J. R., Nkimbeng, M., Bucy, T. I., … Travers, J. L. (2022). Evidence for action: Addressing systemic racism across long-term services and supports. Journal of the American Medical Directors Association, 23(2), 214–219. doi:10.1016/j.jamda.2021.12.018
   PubMed Web of Science ®Google Scholar
• Shugrue, N., Kellett, K., Gruman, C., Tomisek, A., Straker, J., Kunkel, S., & Robison, J. (2019). Progress and policy opportunities in family caregiver assessment: Results from a national survey. Journal of Applied Gerontology, 38(9), 1319–1341. doi:10.1177/0733464817733104
   PubMed Web of Science ®Google Scholar
• StataCorp. (2017). Stata Statistical Software: Release 15. College Station, TX: StataCorp LP.
   Google Scholar
• Tamir, C. (2021). The growing diversity of black America. Pew Research Center.
   Google Scholar
• Torres, J., Kietzman, M., Kathryn, G., & Wallace, S. P. (2015). Walking the LINE: Navigating market and gift economies of care in a consumer-directed home-based care program for older adults. The Milbank Quarterly, 93(4), 732–760. doi:10.1111/1468-0009.12163
   PubMed Web of Science ®Google Scholar
• Travers, J. L. N., Mary, D., Coe, N. B., Meng, C., Fangyong, L., Cohen, & Andrew, B. (2021). Demographic characteristics driving disparities in receipt of long-term services and supports in the community setting. Medical Care, 59(6), 537–542. doi:10.1097/MLR.0000000000001544
   PubMed Web of Science ®Google Scholar
• Vickrey, B. G., Strickland, T. L., Fitten, L. J., Adams, G. R., Ortiz, F., & Hays, R. D. (2007). Ethnic variations in dementia caregiving experiences. Journal of Human Behavior in the Social Environment, 15(2–3), 233–249. doi:10.1300/j137v15n02_14
   Google Scholar
• Williamson, H. J., Perkins, E. A., Acosta, A., Fitzgerald, M., Agrawal, J., & Massey, O. T. (2016). Family caregivers of individuals with intellectual and developmental disabilities: Experiences with Medicaid managed care long-term services and Supports in the United States. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 287–296. doi:10.1111/jppi.12198
   Web of Science ®Google Scholar
• Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3), 372–379. doi:10.1001/jamainternmed.2015.7664
   PubMed Web of Science ®Google Scholar
• Wolff, J. L., Mulcahy, J., Roth, D. L., Cenzer, I. S., Kasper, J. D., Huang, J., & Covinsky, K. E. (2018). Long‐term nursing home entry: A Prognostic model for older adults with a family or unpaid caregiver. Journal of the American Geriatrics Society, 66(10), 1887–1894. doi:10.1111/jgs.15447
   PubMed Web of Science ®Google Scholar
• Yeboah-Korang, A., Kleppinger, A., & Fortinsky, R. H. (2011). Racial and ethnic group variations in service use in a national sample of medicare home health Care Patients with type 2 diabetes mellitus. Journal of the American Geriatrics Society, 59(6), 1123–1129. doi:10.1111/j.1532-5415.2011.03424.x
   PubMed Web of Science ®Google Scholar