References
- AARP. (2019). RAISE family caregivers act promises federal help. https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2015/raise-family-caregivers-act.html
- AARP. (2020). Can I get paid to be a caregiver for a family member? https://www.aarp.org/caregiving/financial-legal/info-2017/you-can-get-paid-as-a-family-caregiver.html?CMP=KNC-DSO-Adobe-Google-Caregiving-KnowledgeableSearch-Caregiver&gclid=Cj0KCQiA2af-BRDzARIsAIVQUOf2zm0IdSFGj44ofdOMMLQ_yziEV-xHSIeo3sVeZypoNWIshib_8MsaAsibEALw_wcB&gclsrc=aw.ds
- AARP and the National Alliance for Caregiving. (2015). Caregiving in the U.S. 2015 Report. http://www.caregiving.org/wp-content/uploads/2015/05/2015_Caregivingin-theUS_Final-Report-June-4_WEB.pdf
- AARP and the National Alliance for Caregiving. (2020). Caregiving in the United States 2020. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf
- Abelson, R. (2021). Covid forces families to rethink nursing home care. New York Times, May 6, 2021. https://www.nytimes.com/2021/05/06/health/covid-nursing-homes.html?searchResultPosition=3
- Ahn, S., Hochhalter, A. K., Moudouni, D. K. M., Smith, M. L., & Ory, M. G. (2012). Self-reported physical and mental health of older adults: The roles of caregiving and resources. Maturitas, 71(1), 62–69. https://doi.org/10.1016/j.maturitas.2011.10.011
- Anderson, L. A., Edwards, V. J., Pearson, W. S., Talley, R. C., McGuire, L. C., & Andresen, E. M. (2013). Adult caregivers in the United States: Characteristics and differences in well-being, by caregiver age and caregiving status. Preventing Chronic Disease, 10, E135. https://doi.org/10.5888/pcd10.130090
- AP-NORC. (2018). Long-Term Caregiving: The True Costs of Caring for Aging Adults. https://www.longtermcarepoll.org/long-term-caregiving-the-true-costs-of-caring-for-aging-adults/
- Bennett, A. (2020, August 4). Some pre-9/11 veterans and their caregivers could qualify for VA stipends starting in October. Audacity, Audacy. https://www.audacy.com/connectingvets/articles/va-to-expand-caregiver-stipends-to-older-veterans-this-fall
- Braun, K. L., Kagawa-Singer, M., Holden, A. E., Burhansstipanov, L., Tran, J. H., Seals, B. F., Corbie-Smith, G., Tsark, J. U., Harjo, L., Foo, M. A., & Ramirez, A. G. (2012). Cancer patient navigator tasks across the cancer care continuum. Journal of Health Care for the Poor and Underserved, 23(1), 398–413. https://doi.org/10.1353/hpu.2012.0029
- Burton, A. M., Sautter, J. M., Tulsky, J. A., Lindquist, J. H., Hays, J. C., Olsen, M. K., Zimmerman, S. I., & Steinhauser, K. E. (2012). Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. Journal of Pain and Symptom Management, 44(3), 410–420. https://doi.org/10.1016/j.jpainsymman.2011.09.018
- Carlin, C., & David, G. (2019). Reduced health care utilization among elderly patients with informal caregivers. The Permanente Journal, 23(3), 18–173. https://doi.org/10.1353/hpu.2012.0029
- Choi, N. G., & Dinitto, D. M. (2013). The digital divide among low-income homebound older adults: Internet use patterns, eHealth literacy, and attitudes toward computer/Internet use. Journal of Medical Internet Research, 15(5), e93. https://doi.org/10.2196/jmir.2645
- Cohen, S. A., Cook, S. K., Sando, T. A., Brown, M. J., & Longo, D. R. (2017). Socioeconomic and demographic disparities in caregiving intensity and quality of life in informal caregivers: A first look at the national study of caregiving. Journal of Gerontological Nursing, 43(6), 17–24. https://doi.org/10.3928/00989134-20170224-01
- Donaldson, E. A., Holtgrave, D. R., Duffin, R. A., Feltner, F., Funderburk, W., & Freeman, H. P. (2012). Patient navigation for breast and colorectal cancer in 3 community hospital settings: An economic evaluation. Cancer, 118(19), 4851–4859. https://doi.org/10.1002/cncr.27487
- Enard, K. R., & Ganelin, D. M. (2013). Reducing preventable emergency department utilization and costs by using community health workers as patient navigators. Journal of Healthcare Management/American College of Healthcare Executives, 58(6), 412. https://pubmed.ncbi.nlm.nih.gov/24400457/
- Fabius, C. D., Wolff, J. L., Kasper, J. D., & Meeks, S. (2020). Race differences in characteristics and experiences of black and white caregivers of older Americans. The Gerontologist, 60(7), 1244–1253. https://doi.org/10.1093/geront/gnaa042
- Finley, J. P. (2018). Caregiver café: Providing education and support to family caregivers of patients with cancer. Clinical Journal of Oncology Nursing, 22(1), 91–96. https://doi.org/10.1188/18.CJON.91-96
- Goldzweig, G., Schapira, L., Baider, L., Jacobs, J. M., Andritsch, E., & Rottenberg, Y. (2019). Who will care for the caregiver? Distress and depression among spousal caregivers of older patients undergoing treatment for cancer. Supportive Care in Cancer, 27(11), 4221–4227. https://doi.org/10.1007/s00520-019-04711-6
- Gottlieb, L. M., Hessler, D., Long, D., Laves, E., Burns, A. R., Amaya, A., Sweeney, P., Schudel, C., & Adler, N. E. (2016). Effects of social needs screening and in-person service navigation on child health: A randomized clinical trial. JAMA Pediatrics, 170(11), e162521. https://doi.org/10.1001/jamapediatrics.2016.2521
- Gurley-Calvez, T., & Williams, J. A. R. (2020). Where is the break-even point for community health workers? Using national data and local programmatic costs to find the break-even point for a metropolitan community health worker program. Medical Care, 58 (4), 314–319. https://journals.lww.com/lww-medicalcare/Fulltext/2020/04000/Where_Is_the_Break_even_Point_for_Community_Health.4.aspx
- Halpern, M. T., Fiero, M. H., & Bell, M. L. (2017). Impact of caregiver activities and social supports on multidimensional caregiver burden: Analyses from nationally-representative surveys of cancer patients and their caregivers. Quality of Life Research, 26(6), 1587–1595. https://doi.org/10.1007/s11136-017-1505-9
- Hanson, L. C., Armstrong, T. D., Green, M. A., Hayes, M., Peacock, S., Elliot-Bynum, S., Goldmon, M. V., Corbie-Smith, G., & Earp, J. A. (2013). Circles of care: Development and initial evaluation of a peer support model for African Americans with advanced cancer. Health Education & Behavior, 40(5), 536–543. https://doi.org/10.1177/1090198112461252
- Hayden, L. J., Glynn, S. M., Hahn, T. J., Randall, F., & Randolph, E. (2012). The use of Internet technology for psychoeducation and support with dementia caregivers. Psychological Services, 9(2), 215–218. https://doi.org/10.1037/a0027056
- Haynes-Maslow, L., Allicock, M., & Johnson, L. S. (2016). Cancer support needs for African American breast cancer survivors and caregivers. Journal of Cancer Education, 31(1), 166–171. https://doi.org/10.1007/s13187-015-0832-1
- Jack, H. E., Arabadjis, S. D., Sun, L., Sullivan, E. E., & Phillips, R. S. (2017). Impact of community health workers on use of healthcare services in the United States: A systematic review. Journal of General Internal Medicine, 32(3), 325–344. https://doi.org/10.1007/s11606-016-3922-9
- Kang, S. Y. (2021). Financial strain among unpaid family caregivers of frail elders in community. Journal of Human Behavior in the Social Environment, 31(5), 582–598. https://doi.org/10.1080/10911359.2020.1799900
- Kennedy, M. A., Hatchell, K. E., DiMilia, P. R., Kelly, S. M., Blunt, H. B., Bagley, P. J., … Batsis, J. A. (2021). Community health worker interventions for older adults with complex health needs: A systematic review. Journal of the American Geriatrics Society, 69(6), 1670–1682. https://doi.org/10.1111/jgs.17078
- KFF State Health Facts. (2018). Medicaid benefits: Self-directed personal assistance services. Data Source: Kaiser Family Foundation Medicaid Benefits Survey conducted by Health Management Associates. https://www.kff.org/other/state-indicator/medicaid-benefits-personal-assistance-services/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Benefit%20Covered%22,%22sort%22:%22asc%22%7D#notes
- Klein, L. C., Kim, K., Almeida, D. M., Femia, E. E., Rovine, M. J., & Zarit, S. H. (2016). Anticipating an easier day: Effects of adult day services on daily cortisol and stress. Gerontologist, 56(2), 303–312. https://doi.org/10.1093/geront/gnu060
- Koumoutzis, A., Cichy, K. E., Dellmann-Jenkins, M., & Blankemeyer, M. (2021). Age differences and similarities in associated stressors and outcomes among young, midlife, and older adult family caregivers. The International Journal of Aging and Human Development 92(4) , 431–449. https://doi.org/10.1177/0091415020905265
- Mason, A., Weatherly, H., Spilsbury, K., Arksey, H., Golder, S., Adamson, J., Drummond, M., & Glendinning, C. (2007). A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers. Health Technology Assessment, 11(15), 1–157, iii. https://doi.org/10.3310/hta11150
- Medicaid. (2021). Self-Directed Services. https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html
- Mudrazija, S., & Johnson, R. W. (2020). Economic impacts of programs to support caregivers: Final report. Prepared for the Office of Disability, Aging and Long-Term Care Policy. https://aspe.hhs.gov/sites/default/files/migrated_legacy_files/194136/EconImpact.pdf
- Musumeci, M. B., Watts, M. O., & Chidambaram, P. (2020). Key state policy choices about medicaid home and community-based services. KFF, February 4, 2020. https://www.kff.org/report-section/key-state-policy-choices-about-medicaid-home-and-community-based-services-issue-brief/
- National Academy of Sciences, Engineering, & Medicine. (2016). Families Caring for an Aging America. http://www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx
- National Academy of Sciences, Engineering, & Medicine. (2021). Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: A way forward. The National Academies Press.
- Neville, C., Beattie, E., Fielding, E., & MacAndrew, M. (2015). Literature review: Use of respite by carers of people with dementia. Health & Social Care in the Community, 23(1), 51–63. https://doi.org/10.1111/hsc.12095
- Ornstein, K. A., Wolff, J. L., Bollens-Lund, E., Rahman, O. K., & Kelley, A. S. (2019). Spousal caregivers are caregiving alone in the last years of life. Health Affairs, 38(6), 964–972. https://doi.org/10.1377/hlthaff.2019.00087
- Otis-Green, S., & Juarez, G. (2012). Enhancing the social well-being of family caregivers. Seminars in Oncology Nursing, 28(4), 246–255. https://doi.org/10.1016/j.soncn.2012.09.007
- Piette, J. D., Striplin, D., Marinec, N., Chen, J., & Aikens, J. E. (2015). A randomized trial of mobile health support for heart failure patients and their informal caregivers: Impacts on caregiver-reported outcomes. Medical Care, 53(8), 692–699. https://doi.org/10.1097/mlr.0000000000000378
- Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychology and Aging, 26(1), 1–14. https://doi.org/10.1037/a0021863
- Potter, A. J. (2018). Factors associated with caregivers’ use of support services and caregivers’ nonuse of services sought. Journal of Aging & Social Policy, 30(2), 155–172. https://doi.org/10.1080/08959420.2017.1414539
- Roberts, E., & Struckmeyer, K. M. (2018). The impact of respite programming on caregiver resilience in dementia care: A qualitative examination of family caregiver perspectives. INQUIRY: The Journal of Health Care Organization, Provision, and Financing, 55, 46958017751507. https://doi.org/10.1177/0046958017751507
- Rosalynn Carter Institute. (2020). Recalibrating for caregivers: Recognizing the public health challenge. https://www.rosalynncarter.org/wp-content/uploads/2020/10/RCI_Recalibrating-for-Caregivers_2020.pdf
- Rote, S. M., Angel, J. L., Moon, H., Markides, K., & Suitor, J. J. (2019). Caregiving across diverse populations: New evidence from the national study of caregiving and hispanic EPESE. Innovation in Aging, 3(2), igz033. https://doi.org/10.1093/geroni/igz033
- Rowe, J. W., Fulmer, T., & Fried, L. (2016). Preparing for better health and health care for an aging population. JAMA, 316(16), 1643–1644. https://doi.org/10.1001/jama.2016.12335
- Russell, D., Burgdorf, J. G., Kramer, C., & Chase, J.-A. D. (2021). Family caregivers’ conceptions of trust in home health care providers. Research in Gerontological Nursing, 14(4), 200–210. https://doi.org/10.3928/19404921-20210526-01
- Sautter, J. M., Tulsky, J. A., Johnson, K. S., Olsen, M. K., Burton-Chase, A. M., Lindquist, J. H., Zimmerman, S., & Steinhauser, K. E. (2014). Caregiver experience during advanced chronic illness and last year of life. Journal of the American Geriatrics Society, 62(6), 1082–1090. https://doi.org/10.1111/jgs.12841
- Shane, L. (2018, February 6). VA sees big savings in expanding caregiver stipends, but lawmakers still worry about costs. MilitaryTimes. https://www.militarytimes.com/veterans/2018/02/06/va-sees-big-savings-in-expanding-caregiver-stipends-but-lawmakers-still-worry-about-costs/
- Sperber, N. R., Boucher, N. A., Delgado, R., Shepherd-Banigan, M. E., McKenna, K., Moore, M., & Van Houtven, C. H. (2019). Including family caregivers in seriously Ill Veterans’ care: A mixed-methods study. Health Affairs, 38(6), 957–963. https://doi.org/10.1377/hlthaff.2019.00012
- U.S. Department of Verterans Affairs. (2020c). FY 2021 Budget Submission: Medical Programs and Information Technology Programs (Volume 2 of 4). https://www.va.gov/budget/products.asp
- U.S. Department of Veterans Affairs, Caregiver Support Program. (2020a). Monthly stipend for primary family caregivers fact sheet. https://www.caregiver.va.gov/pdfs/FactSheets/Monthly-Caregiver-Stipend-Factsheet-11-30-20.pdf#
- U.S. Department of Veterans Affairs, Caregiver Support Program. (2020b). Eligibility criteria fact sheet. https://www.caregiver.va.gov/pdfs/FactSheets/CSP_Eligibility_Criteria_Factsheet_1-4-21.pdf#
- Vos, J., Gerling, K., Linehan, C., Siriwardena, A. N., & Windle, K. (2018). Understanding care navigation by older adults with multimorbidity: Mixed-methods study using social network and framework analyses. JMIR Aging, 1(2), e11054. https://doi.org/10.2196/11054
- Wang, M. L., Gallivan, L., Lemon, S. C., Borg, A., Ramirez, J., Figueroa, B., McGuire, A., & Rosal, M. C. (2015). Navigating to health: Evaluation of a community health center patient navigation program. Preventive Medicine Reports, 2, 664–668. https://doi.org/10.1016/j.pmedr.2015.08.002
- Washburn, D. J., Callaghan, T., Schmit, C., Thompson, E., Martinez, D., & Lafleur, M. (2021). Community health worker roles and their evolving interprofessional relationships in the United States. Journal of Interprofessional Care, 1–7. https://doi.org/10.1080/13561820.2021.1974362
- Wolff, J. L., Feder, J., & Schulz, R. (2016). Supporting family caregivers of older Americans. New England Journal of Medicine, 375(26), 2513–2515. https://doi.org/10.1056/NEJMp1612351
- Wolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2017). Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 1021–1032. https://doi.org/10.1093/geront/gnx093
- 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. https://doi.org/10.1001/jamainternmed.2015.7664
- Ye, W., Kuo, S., Kieffer, E. C., Piatt, G., Sinco, B., Palmisano, G., Spencer, M. S., & Herman, W. H. (2021). Cost-Effectiveness of a diabetes self-management education and support intervention led by community health workers and peer leaders: Projections from the racial and ethnic approaches to community health detroit trial. Diabetes Care, 44(5), 1108–1115. https://doi.org/10.2337/dc20-0307
- Zarit, S. H., Bangerter, L. R., Liu, Y., & Rovine, M. J. (2017). Exploring the benefits of respite services to family caregivers: Methodological issues and current findings. Aging & Mental Health, 21(3), 224–231. https://doi.org/10.1080/13607863.2015.1128881