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Chronic Illness Care pp 111–120Cite as

Family and Other Caregivers

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Abstract

It could be said that “it takes a village” to manage a chronic condition. In day-to-day living, individuals contending with chronic illness routinely rely on family members, friends, and neighbors to provide support ranging from physical assistance to emotional relief. Such support from caregivers often comes at a cost, with financial, physical, and emotional consequences that may imperil the caregiver’s own health and well-being. Caregivers’ own needs must be met, lest they become at risk for developing poor outcomes themselves. Negative effects of caregiving may strain an already stressed healthcare system, and interventions that support caregivers may reduce the need for costlier formal support. Supporting caregivers also helps them maintain caregiving roles, which are often valued by both caregiver and care recipient. This chapter describes the effects on caregivers who are supporting individuals living with a chronic condition. Information about assessment and intervention, opportunities for further research, and populations of concern are highlighted.

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References

  1. Kleinman A. From illness as culture to caregiving as moral experience. N Engl J Med. 2013;368(15):1376–7.

    Article  CAS  PubMed  Google Scholar 

  2. Caregiver Health. 2006. 23 Mar 2017. Available from: https://www.caregiver.org/caregiver-health

  3. AARP. N.A.F.C Caregiving in the United States: executive summary; 2009. New York, NY.

    Google Scholar 

  4. Adelman RD, et al. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60.

    Article  CAS  PubMed  Google Scholar 

  5. Sullivan AMMD. Who is taking care of the caregiver? J Patient Experience. 2015;2(1):7–12.

    Article  Google Scholar 

  6. Ankuda CLD. Trends in caregiving assistance for home-dwelling, functionally impaired older adults in the United States, 1998–2012. J Am Med Assoc. 2016;316(2):218–9.

    Article  Google Scholar 

  7. Caregiving in the U.S. 2015. National alliance of caregiving; AARP [research report]; 2015. Cited 2016 15 Jul 2016. Available from: http://www.caregiving.org/caregiving2015/

  8. Chari A, Engberg J, Ray K, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Serv Res. 2015;50(3):871–82.

    Article  PubMed  Google Scholar 

  9. Wittenberg EPL. Health as a family affair. N Engl J Med. 2016;374(19):1804–6.

    Article  CAS  PubMed  Google Scholar 

  10. Older adults and family caregivers need paid family and medical leave. National partnership for women & families; 2015. Available from: http://www.nationalpartnership.org/research-library/work-family/paid-leave/older-adults-and-caregivers.pdf

  11. Association, A.O.T. Occupational therapy practice framework: domain and process (3rd edition). Am J Occup Ther. 2014;68(Supplement_1):S1–S48.

    Article  Google Scholar 

  12. Retooling for an aging America: building the health care workforce; 2008. 19 Feb 2014. Available from: http://www.iom.edu/Reports/2008/Retooling-for-an-aging-America-Building-the-Health-Care-Workforce.aspx

  13. Washington KT, et al. Experiences of sexual and gender minorities caring for adults with non-AIDS-related chronic illnesses. Soc Work Res. 2015;39(2):71–81.

    Article  Google Scholar 

  14. Lesbian, gay, bisexual, and transgender health; 2016. Cited 2016. Available from: https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health

  15. Muraco A, Fredriksen-Goldsen KI. The highs and lows of caregiving for chronically ill lesbian, gay, and bisexual elders. J Gerontol Soc Work. 2014;57(2–4):251–72.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Greenberger H, Litwin H. Can burdened caregivers be effective facilitators of elder care-recipient health care? J Adv Nurs. 2003;41(4):332–41.

    Article  PubMed  Google Scholar 

  17. Bertrand RM, et al. Caregiving and cognitive function in older women: evidence for the healthy caregiver hypothesis. J Aging Health. 2012;24(1):48–66.

    Article  PubMed  Google Scholar 

  18. Van den Heuvel E, de Witte L, Schure LM, Sanderman R, Meyboom-de Jong B. Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clin Rehabil. 2001;15:669–77.

    Article  PubMed  Google Scholar 

  19. Savundranayagam MY, Montgomery RJ, Kosloski K. A dimensional analysis of caregiver burden among spouses and adult children. Gerontologist. 2011;51(3):321–31.

    Article  PubMed  Google Scholar 

  20. Geere JL, et al. Caring for children with physical disability in Kenya: potential links between caregiving and carers’ physical health. Child Care Health Dev. 2013;39(3):381–92.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Bevans MSE. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. J Am Med Assoc. 2012;307(4):398–403.

    Article  CAS  Google Scholar 

  22. Granek L, et al. Caregiving, single parents and cumulative stresses when caring for a child with cancer. Child Care Health Dev. 2014;40(2):184–94.

    Article  CAS  PubMed  Google Scholar 

  23. Kuster PA, Merkle CJ. Caregiving stress, immune function, and health: implications for research with parents of medically fragile children. Issues Compr Pediatr Nurs. 2004;27(4):257–76.

    Article  PubMed  Google Scholar 

  24. Hoffman GJ, Lee J, Mendez-Luck CA. Health behaviors among Baby Boomer informal caregivers. Gerontologist. 2012;52(2):219–30.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Olson RE. Indefinite loss: the experiences of carers of a spouse with cancer. Eur J Cancer Care. 2014;23:553–61.

    Article  CAS  Google Scholar 

  26. Rivera HR. Depression symptoms in cancer caregivers. Clin J Oncol Nurs. 2009;13(2):195–202.

    Article  PubMed  Google Scholar 

  27. Skarupski KA, et al. Race differences in emotional adaptation of family caregivers. Aging Ment Health. 2009;13(5):715–24.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Ejem DB, Drentea P, Clay OJ. The effects of caregiver emotional stress on the depressive symptomatology of the care recipient. Aging Ment Health. 2015;19(1):55–62.

    Article  PubMed  Google Scholar 

  29. Lilly MB, et al. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia Canada. Health Soc Care Community. 2012;20(1):103–12.

    Article  PubMed  Google Scholar 

  30. Hunt C. Concepts in caregiving research. J Nurs Sch. 2003;35(1):27–32.

    Article  Google Scholar 

  31. Hogstely M, Curry L, Walker C. Caring for older adults: the benefits of informal family caregiving. J Theory Constr Test. 2005;9(2):55–60.

    Google Scholar 

  32. Donovan ML, Corcoran MA. Description of dementia caregiver uplifts and implications for occupational therapy. Am J Occup Ther. 2010;64(4):590–5.

    Article  PubMed  Google Scholar 

  33. Heru AM. Family functioning, burden, and reward in the caregiving for chronic mental illness. Fam Syst Health. 2000;18:91–103.

    Article  Google Scholar 

  34. Pakenham KI. Making sense of caregiving for persons with multiple sclerosis (MS): the dimensional structure of sense making and relations with positive and negative adjustment. Int J Behav Med. 2008;15(3):241–52.

    Article  PubMed  Google Scholar 

  35. Lopez J, et al. Spirituality and self-efficacy in dementia family caregiving: trust in God and in yourself. Int Psychogeriatr. 2012;24(12):1943–52.

    Article  CAS  PubMed  Google Scholar 

  36. AARP. The cost of family caregiving: out-of-pocket spending surprisingly high; 2016. Washington, DC.

    Google Scholar 

  37. Caress AL, et al. A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease. J Clin Nurs. 2009;18(4):479–91.

    Article  PubMed  Google Scholar 

  38. Zarit S, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55.

    Article  CAS  PubMed  Google Scholar 

  39. Robinson BC. Validation of a caregiver strain index. J Gerontol. 1983;38(3):344–8.

    Article  CAS  PubMed  Google Scholar 

  40. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–13.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  41. Selected caregiver assessment measures: a resource inventory for practitioners; 2012. Cited 2017, 15 Mar 2017. Available from: https://www.caregiver.org/sites/caregiver.org/files/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.12.pdf

  42. Tailored Caregiver Assessment and Referral (TCARE). Aging and disability evidence-based programs and practices; 2017. Available from: https://www.acl.gov/programs/strengthening-aging-and-disability-networks/aging-and-disability-evidence-based-programs

  43. Curry L, Walker C, Moore P, Hogstel M. Validating a model of chronic illness and family caregiving. J Theory Constr Test. 2010;14(1):10–6.

    Google Scholar 

  44. Stark SL, et al. Clinical reasoning guideline for home modification interventions. Am J Occup Ther. 2015;69(2):6902290030p1–8.

    Article  PubMed  Google Scholar 

  45. Arnsberger P, Lynch U, Li F. The effects of caregiving on women’s self-assessed health status: an international comparison. Health Care Women Int. 2012;33(10):878–95.

    Article  PubMed  Google Scholar 

  46. Friedemann ML, et al. Resource need and use of multiethnic caregivers of elders in their homes. J Adv Nurs. 2014;70(3):662–73.

    Article  PubMed  Google Scholar 

  47. Wolff JL, et al. Effects of guided care on family caregivers. Gerontologist. 2010;50(4):459–70.

    Article  PubMed  Google Scholar 

  48. Rodriguez-Sanchez E, et al. Effects of a psychological intervention in a primary health care center for caregivers of dependent relatives: a randomized trial. Gerontologist. 2013;53(3):397–406.

    Article  PubMed  Google Scholar 

  49. Krieger T, Feron F, Dorant E. Developing a complex intervention programme for informal caregivers of stroke survivors: the caregivers’ guide. Scand J Caring Sci. 2017;31(1):146–56.

    Article  PubMed  Google Scholar 

  50. Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18(4):577–95.

    Article  PubMed  Google Scholar 

  51. Nichols LO, et al. REACH VA: moving from translation to system implementation. Gerontologist. 2016;56(1):135–44.

    Article  PubMed  Google Scholar 

  52. Noel MA, Kaluzynski TS, Templeton VH. Quality dementia care. J Appl Gerontol. 2017;36(2):195–212.

    Article  PubMed  Google Scholar 

  53. Figueiredo D, et al. Caring for relatives with chronic obstructive pulmonary disease: how does the disease severity impact on family carers? Aging Ment Health. 2014;18(3):385–93.

    Article  PubMed  Google Scholar 

  54. Cruz J, Marques A, Figueiredo D. Impacts of COPD on family carers and supportive interventions: a narrative review. Health Soc Care Community. 2017;25(1):11–25.

    Article  PubMed  Google Scholar 

  55. Husebo AM, Storm M. Virtual visits in home health care for older adults. ScientificWorldJournal. 2014;2014:689873.

    PubMed  PubMed Central  Google Scholar 

  56. Czaja SRM. Telecommunications technology as an aid to family caregivers of persons with dementia. Psychosom Med. 2002;64:469–76.

    Article  PubMed  Google Scholar 

  57. Chi NC, Demiris G. A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare. 2015;21(1):37–44.

    Article  PubMed  Google Scholar 

  58. Austrom MG, et al. Use of a multiparty web based videoconference support group for family caregivers: innovative practice. Dementia (London). 2015;14(5):682–90.

    Article  Google Scholar 

  59. Griffiths PC, et al. Development and implementation of tele-savvy for dementia caregivers: a Department of Veterans Affairs Clinical Demonstration Project. Gerontologist. 2016;56(1):145–54.

    Article  PubMed  Google Scholar 

  60. McKenzie B, et al. Safe home program: a suite of technologies to support extended home care of persons with dementia. Am J Alzheimers Dis Other Demen. 2013;28(4):348–54.

    Article  PubMed  Google Scholar 

  61. Allman R, Shay K, Massey K, Lanen S. Veterans Health Administration (VHA) innovative dementia models of care: patient-centered alternatives to institutional extended care. Department of Veterans Affairs; 2015. Washington, DC.

    Google Scholar 

  62. Moo LR, Jafri Z, Morin P. Home-based video telehealth for veterans with dementia. Fed Pract. 2014:34–6. Parsipanny, NJ.

    Google Scholar 

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Author information

Authors and Affiliations

  1. Departments of Occupational Therapy and Community Health, Tufts University 574 Boston Avenue, Suite 216, Medford, MA, USA

    Megan Gately & Keren Ladin

  2. VA Medical Center, Geriatric Research and Clinical Center, Bedford, MA, USA

    Megan Gately

  3. Research on Ethics, Aging, and Community Health (REACH Lab), Medford, MA, USA

    Keren Ladin

Authors
  1. Megan Gately
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  2. Keren Ladin
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Correspondence to Megan Gately or Keren Ladin .

Editor information

Editors and Affiliations

  1. Department of Family Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

    Timothy P. Daaleman

  2. Department of Family Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

    Margaret R. Helton

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Gately, M., Ladin, K. (2018). Family and Other Caregivers. In: Daaleman, T., Helton, M. (eds) Chronic Illness Care. Springer, Cham. https://doi.org/10.1007/978-3-319-71812-5_9

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  • DOI: https://doi.org/10.1007/978-3-319-71812-5_9

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-71811-8

  • Online ISBN: 978-3-319-71812-5

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