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Caregiving (in the Twenty-First Century)

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Geriatric Medicine

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Abstract

As a society and as individuals, family and friends are the fundamental framework for growth, support, and care. These support systems have incredible influence, both positive and potentially negative. Family caregivers, family by birth or family by choice, impact one’s health, social and economic well-being, and overall life experience. These effects are magnified at the extremes of the lifespan when needs often compound. For older adults, caregivers often play an integral role in the well-being and independence of their individual care recipients. In the United States there is greater need for caregivers to coordinate complex care and to access and utilize societal support systems, at times from a distance. Person-centered care involves understanding the values and wishes of the care-recipient and is central to effective caregiving and quality of life (and death) for older adults.

This chapter describes the demographics and changing epidemiology of caregiving, tasks carried out by caregivers, and the impact of caregiving on health outcomes of both older adults and the caregivers themselves. It will touch upon interdisciplinary management of patients with caregiving needs, education and support of caregivers, and the importance of incorporating caregiving into advance care planning discussions. We conclude by highlighting gaps in knowledge and the need to focus research on models of care that aim to improve outcomes for older adults and their caregivers.

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References

  1. Ritchie H, Roser M. Age structure. Our World in Data [Internet]. 2019 [cited 2021 Nov 5]. Available from: https://ourworldindata.org/age-structure.

  2. Roser M, Ortiz-Ospina E, Ritchie H. Life expectancy. 2013. Published online at OurWorldInData.org. Retrieved from: https://ourworldindata.org/life-expectancy [Online Resource].

  3. Redfoot D, Feinberg L, Houser A. The aging of the baby boom and the growing care gap: a look at future declines in the availability of family caregivers. Washington, DC: AARP Public Policy Institute; 2013. www.aarp.org/research/ppi.

    Google Scholar 

  4. Papanicolas I, Woskie LR, Orlander D, Orav EJ, Jha AK. The relationship between health spending and social spending in high-income countries: how does the US compare? Health Aff (Millwood). 2019;38(9):1567–75.

    Article  PubMed  Google Scholar 

  5. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7.

    Article  PubMed  Google Scholar 

  6. Doty P. Cost-effectiveness of home and community-based long-term care services. Washington, DC: U.S. Department of Health and Human Services; 2000.

    Google Scholar 

  7. Levine C, Snyder R. Family caregivers: the unrecognized strength behind hospital at home [Internet]. Healthaffairs.org. [cited 2021 Nov 5]. Available from: https://www.healthaffairs.org/do/10.1377/hblog20210528.703003/full/.

  8. Hartman M, Martin AB, Benson J, Catlin A, National Health Expenditure Accounts Team. National health care spending in 2018: growth driven by accelerations in Medicare and private insurance spending: US health care spending. Health Aff (Millwood). 2020;39(1):8–17.

    Article  PubMed  Google Scholar 

  9. Sibbald B, McDonald R, Roland M. Shifting care from hospitals to the community: a review of the evidence on quality and efficiency. J Health Serv Res Policy. 2007;12(2):110–7.

    Article  PubMed  Google Scholar 

  10. Choi H, Heisler M, Norton EC, Langa KM, Cho T-C, Connell CM. Family care availability and implications for informal and formal care used by adults with dementia in the US: study examines family care availability and implications for informal and formal care used by adults with dementia in the United States. Health Aff (Millwood). 2021;40(9):1359–67.

    Article  PubMed  Google Scholar 

  11. Snelling S. Rosalynn Carter: a pioneering caregiving advocate says more must be done [Internet]. Next avenue. 2012 [cited 2021 Nov 5]. Available from: https://www.nextavenue.org/rosalynn-carter-pioneering-caregiving-advocate-says-more-must-be-done/.

  12. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.

    Article  CAS  PubMed  Google Scholar 

  13. May S Jr. Caregiving in the US 2020 [Internet]. Caregivingorg. 2020 [Accessed 5 Nov 2021]. Available from: https://www.caregiving.org/caregiving-in-the-us-2020/.

  14. Freedman VA, Wolf DA, Spillman BC. Disability-free life expectancy over 30 years: a growing female disadvantage in the US population. Am J Public Health. 2016;106(6):1079–85.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology. 2007;29(1–2):125–32.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  16. Alzheimer’s Association. 2021 Alzheimer’s disease facts and figures. Alzheimers Dement. 2021;17(3).

    Google Scholar 

  17. Taylor P, Parker K, Patten E, Motel S. The sandwich generation rising financial burdens for middle-aged Americans. Washington, DC: Pew Social & Demographic Trends; 2013. www.pewresearch.org/social-trends/2013/01/30/the-sandwich-generation/.

    Google Scholar 

  18. Global Coalition on Aging. Shining a spotlight on caregiving: employer practices through a policy lens. 16 Nov 2021. GCOA_BAC-Spotlight-on-Caregiving_Employer-Practices-Through-a-Policy-Lens_FINAL.pdf (globalcoalitiononaging.com).

  19. Coughlin J. Estimating the impact of caregiving and employment on well-being. Outcomes Insights Health Manag. 2010;2(1):1–7.

    Google Scholar 

  20. The MetLife study of working caregivers and employer health costs: double Jeopardy for baby boomers caring for their parents. MetLife Mature Market Group, National Alliance for Caregiving, and the University of Pittsburgh Institute on Aging. June 2011. https://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf.

  21. Accius J. Breaking stereotypes: spotlight on male family caregivers. AARP Policy Institute; 2017. https://www.aarp.org/content/dam/aarp/ppi/2017-01/Breaking-Stereotypes-Spotlight-on-Male-Family-Caregivers.pdf.

  22. Allen SM, Lima JC, Goldscheider FK, Roy J. Primary caregiver characteristics and transitions in community-based care. J Gerontol B Psychol Sci Soc Sci. 2012;67(3):362–71.

    Article  PubMed  Google Scholar 

  23. National Alliance for Caregiving and AARP. Aarp.org. [cited 2021 Nov 5]. Available from: https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf.

  24. NYS Office of Aging, A survey of informal caregivers in NYC [Internet]. Nycgov. 2017 [cited 2021 Nov 5]. Available from: https://www1.nyc.gov/assets/dfta/downloads/pdf/reports/UnpaidCaregivers2017.pdf.

  25. Schulz R, Beach SR, Czaja SJ, Martire LM, Monin JK. Family caregiving for older adults. Annu Rev Psychol. 2020;71(1):635–59.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Lee M, Ryoo JH, Campbell C, Hollen PJ, Williams IC. Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: an integrative review. J Clin Nurs. 2019;28(23–24):4177–89.

    Article  PubMed  Google Scholar 

  27. Katz S, Downs TD, Cash HR, Grotz RC. Progress in development of the index of ADL. Gerontologist. 1970;10(1):20–30.

    Article  CAS  PubMed  Google Scholar 

  28. Katz S. Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. J Am Geriatr Soc. 1983;31(12):721–7.

    Article  CAS  PubMed  Google Scholar 

  29. Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(3 Part 1):179–86.

    Article  CAS  PubMed  Google Scholar 

  30. Kitko L, McIlvennan CK, Bidwell JT, Dionne-Odom JN, Dunlay SM, Lewis LM, Meadows G, Sattler ELP, Schulz R, Stromberg A, AHA Council on Cardiovascular and Stroke Nursing; Council Quality of Care and Outcomes Research; Council on Clinical Cardiology, Council on Lifestyle and Cardiometabolic Health. Family caregiving for individuals with heart failure: a scientific statement from the American Heart Association. Circulation. 2020;141(22):e864–78. https://doi.org/10.1161/CIR.0000000000000768.

    Article  PubMed  Google Scholar 

  31. Rodakowski J, Rocco PB, Ortiz M, Folb B, Schulz R, Morton SC, Leathers SC, Hu L, James AE. Caregiver integration during discharge planning for older adults to reduce resource use: a meta-analysis. J Am Geriatr Soc. 2017;65(8):1748–55. https://doi.org/10.1111/jgs.14873. Epub 2017.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Pristavec T, Luth EA. Informal caregiver burden, benefits, and older adult mortality: a survival analysis. J Gerontol B Psychol Sci Soc Sci. 2020;75(10):2193–206.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Dionne-Odom N, Hooker SA, Bekelman D, et al. Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review. Heart Fail Rev. 2017;22(5):543–57. https://doi.org/10.1007/s10741-017-9597.

    Article  PubMed Central  Google Scholar 

  34. Carney MT, Fujiwara J, Emmert BE Jr, Liberman TA, Paris B. Elder orphans hiding in plain sight: a growing vulnerable population. Curr Gerontol Geriatr Res. 2016;2016:11. https://doi.org/10.1155/2016/4723250.

    Article  Google Scholar 

  35. Daniels H, Kane GC. Addressing social determinants to improve patient care and promote health equity: an American College of Physicians position paper. Ann Intern Med. 2018;168(577–578):732617–2441.

    Google Scholar 

  36. Greysen H, Harrison JD, Kripalani S, et al. Understanding patient-centered readmission factors: a multi-site, mixed-methods study. BMJ Qual Saf. 2017;26(1):33–41. https://doi.org/10.1136/bmjqs-2015-004570. Epub 2016 Jan 14.

    Article  PubMed  Google Scholar 

  37. Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist. 1986;26(3):260–6.

    Article  CAS  PubMed  Google Scholar 

  38. Skufca L, Rainville C. Caregiving can be costly – even financially. 2021 caregiving out-of-pocket costs study. Washington, DC: AARP Research; 2021. https://www.aarp.org/research/topics/care/info-2016/family-caregivers-cost-survey.html.

    Google Scholar 

  39. National Research Council Panel to review risk and prevalence of elder abuse and neglect. Elder mistreatment: abuse, neglect, and exploitation in an aging America. Bonnie RJ, Wallace RB, editors. Washington, DC: National Academies Press; 2003. 5: Risk factors for elder mistreatment. Available from: https://www.ncbi.nlm.nih.gov/books/NBK98788/.

  40. Carney MT, Kahan FS, Paris BE. Elder abuse: is every bruise a sign of abuse? Mt Sinai J Med. 2003;70(2):69–74.

    Google Scholar 

  41. Zeiss AM, Steffer AM. Interdisciplinary health care teams: the basic unit of geriatric care. In: Carstensen LL, Edelstein BA, Dornbrand L, editors. The practical handbook of clinical gerontology. Thousand Oaks: Sage Publications; 1996. p. 423–49.

    Google Scholar 

  42. Russell SC. Challenges to effective team functioning: multi-, inter-, or transdisciplinary models. IHCT Conference: Toledo, OH; 1988.

    Google Scholar 

  43. Frattali CM, Lorendo LC. Team work defined. Prof Collab: Team Approach Health Care. 1993;3(11):8–13.

    Google Scholar 

  44. Clark PG, Spence DL, Sheehan JL. A service/learning model for interdisciplinary teamwork in health and aging. Gerontol Geriatr Educ. 1986 Summer;6(4):3–16.

    Article  CAS  PubMed  Google Scholar 

  45. de Alves LCS, Monteiro DQ, Bento SR, Hayashi VD, de Pelegrini LNC, Vale FAC. Burnout syndrome in informal caregivers of older adults with dementia: a systematic review. Dement Neuropsychol. 2019;13(4):415–21.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Pinquart M, Sörensen S. Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a meta-analytic comparison. Aging Ment Health. 2004;8(5):438–49.

    Article  CAS  PubMed  Google Scholar 

  47. Gallagher S, Wetherell MA. Risk of depression in family caregivers: unintended consequence of COVID-19. BJPsych Open. 2020;6(6):e119.

    Article  PubMed  Google Scholar 

  48. Spitzer RL. Patient Health Questionnaire: PHQ. New York: New York State Psychiatric Institute; 1999.

    Google Scholar 

  49. Thornton M, Travis SS. Analysis of the reliability of the modified caregiver strain index. J Gerontol. 2003;58B(2):127–32.

    Article  Google Scholar 

  50. Cummings JL. The neuropsychiatric inventory: assessing psychopathology in dementia patients. Neurology. 1997;48:S10–6.

    Article  CAS  PubMed  Google Scholar 

  51. Polenick CA, Stanz SD, Leggett AN, Maust DT, Hodgson NA, Kales HC. Stressors and resources related to medication management: associations with spousal caregivers’ role overload. Gerontologist. 2020;60(1):165–73.

    Article  PubMed  Google Scholar 

  52. Dixe MDACR, da Conceição Teixeira LF, Areosa TJTCC, et al. Needs and skills of informal caregivers to care for a dependent person: a cross-sectional study. BMC Geriatr. 2019;19(1):255. https://doi.org/10.1186/s12877-019-1274-0.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Hong M, Harrington D. The effects of caregiving resources on perceived health among caregivers. Health Soc Work. 2016;41(3):155–63.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Molloy GJ, Johnston DW, Witham MD. Family caregiving and congestive heart failure. Review and analysis. Eur J Heart Fail. 2005;7(4):592–603. https://doi.org/10.1016/j.ejheart.2004.07.008.

    Article  PubMed  Google Scholar 

  55. Griffin JM, Meis LA, Greer N, et al. Effectiveness of caregiver interventions on patient outcomes in adults with dementia or Alzheimer’s disease: a systematic review. Gerontol Geriatr Med. 2015;1:2333721415595789. https://doi.org/10.1177/2333721415595789. Published 2015 Jul 21.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Mittelman MS, Bartels SJ. Translating research into practice: case study of a community-based dementia caregiver intervention. Health Aff (Millwood). 2014;33(4):587–95.

    Article  PubMed  Google Scholar 

  57. Cheng CT, Chan WC, Lam LCW. Are care-recipient outcomes attributable to improved caregiver well-being? A cluster-randomized controlled trial of benefit-finding intervention. The American Journal of Geriatric Psychiatry; 2021. ISSN 1064-7481. https://doi.org/10.1016/j.jagp.2021.08.009. (https://www.sciencedirect.com/science/article/pii/S1064748121004528).

  58. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families caring for an aging America. Washington, DC: National Academies Press; 2016. 5: Programs and supports for family caregivers of older adults. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396394.

  59. Sörensen S, Pinquart MH, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. https://doi.org/10.1093/geront/42.3.356.

    Article  PubMed  Google Scholar 

  60. Liew TM, Lee CS. Reappraising the efficacy and acceptability of multicomponent interventions for caregiver depression in dementia: the utility of network meta-analysis. Gerontologist. 2019;59(4):e380–e92.

    Article  PubMed  Google Scholar 

  61. Duan-Porter W, Ullman K, Rosebush C, McKenzie L, Ensrud KE, Ratner E, Greer N, Shippee T, Gaugler JE, Wilt TJ. Interventions to prevent or delay long-term nursing home placement for adults with impairments—a systematic review of reviews. J Gen Intern Med. 2020;35:2118–29. https://doi.org/10.1007/s11606-019-05568-5.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Carney MT, Liberman T. The family meeting as therapeutic intervention. Am J Ther. 2018;25(1):e183–8.

    Article  Google Scholar 

  63. Given BA, Given CW, Sherwood P. The challenge of quality cancer care for family caregivers. Semin Oncol Nurs. 2012;28(4):205–12. https://doi.org/10.1016/j.soncn.2012.09.002.

    Article  PubMed  Google Scholar 

  64. Hill L, Carson MA, Vitale C. Care plans for the older heart failure patient. Eur Heart J Suppl. 2019;21(Supplement L):L32–5.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Hooker SA, Grigsby ME, Riegel B, Bekelman DB. The impact of relationship quality on health-related outcomes in heart failure patients and informal family caregivers: an integrative review. J Cardiovasc Nurs. 2015;30(4 Suppl 1):S52–63. https://doi.org/10.1097/JCN.0000000000000270.

    Article  PubMed  Google Scholar 

  66. Zarit SH, Femia EE. A future for family care and dementia intervention research? Challenges and strategies. Aging Ment Health. 2008;12(1):5–13.

    Article  CAS  PubMed  Google Scholar 

  67. Lyons KS, Lee CS. The theory of dyadic illness management. J Fam Nurs. 2018;24(1):8–28.

    Article  PubMed  Google Scholar 

  68. Buck HG, Hupcey J, Juárez-Vela R, Vellone E, Riegel B. Heart failure care dyadic typology: initial conceptualization, advances in thinking, and future directions of a clinically relevant classification system. J Cardiovasc Nurs. 2019;34(2):159–65.

    Article  PubMed  PubMed Central  Google Scholar 

  69. Rote SM, Angel JL, Moon H, Markides K. Caregiving across diverse populations: new evidence from the National Study of Caregiving and Hispanic EPESE. Innov Aging. 2019;3(2):igz033. https://doi.org/10.1093/geroni/igz033. Published 2019 Sep 9.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Pharr JR, Francis CD, Terry C, Clark MC. Culture, caregiving and health: exploring the influence of culture on family caregiver experiences. Int Sch Res Not. 2014:689826. https://doi.org/10.1155/2014/689826.

  71. Leveraging technology to support—not supplant—the home care workforce [Internet]. Healthaffairs.org. [cited 2021 Nov 5]. Available from: https://www.healthaffairs.org/do/10.1377/hblog20190805.54553/full/.

  72. Caring for your parents, joys of caregiving [documentary]. WGBH Educational Foundation and MIT: PBS; 2008.

    Google Scholar 

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Authors and Affiliations

  1. Division of Geriatrics and Palliative Medicine, Zucker School of Medicine at Hofstra Northwell, New Hyde Park, NY, USA

    Maria Torroella Carney, Marzena Gieniusz & Edith Burns

Authors
  1. Maria Torroella Carney
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  2. Marzena Gieniusz
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  3. Edith Burns
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Corresponding author

Correspondence to Maria Torroella Carney .

Editor information

Editors and Affiliations

  1. California Association of Long Term Care Medicine, Newbury Park, CA, USA

    Michael R. Wasserman

  2. Betty Irene Moore School of Nursing, University of California, Davis, Sacramento, CA, USA

    Debra Bakerjian

  3. Department of Clinical Pharmacy, University of Colorado Skaggs School of Pharmacy and Pharmaceutical Sciences, Aurora, CO, USA

    Sunny Linnebur

  4. Division of Geriatrics, SUNY Upstate Medical University, Syracuse, NY, USA

    Sharon Brangman

  5. Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy

    Matteo Cesari

  6. Section of Geriatric Medicine, Division of Internal Medicine, Department of Medicine, Cedars-Sinai, Beverly Hills, CA, USA

    Sonja Rosen

Section Editor information

  1. California Association of Long Term Care Medicine, Newbury Park, California, USA

    Michael R. Wasserman M.D., CMD

  2. Department of Geriatrics, SUNY Upstate Medical University, Syracuse, New York, USA

    Sharon Brangman MD

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Carney, M.T., Gieniusz, M., Burns, E. (2024). Caregiving (in the Twenty-First Century). In: Wasserman, M.R., Bakerjian, D., Linnebur, S., Brangman, S., Cesari, M., Rosen, S. (eds) Geriatric Medicine. Springer, Cham. https://doi.org/10.1007/978-3-030-74720-6_107

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  • DOI: https://doi.org/10.1007/978-3-030-74720-6_107

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