Skip to main content
SpringerLink
Log in

Care for Family Caregivers

  • Chapter
  • First Online:
A Guide to Psychosocial and Spiritual Care at the End of Life

  • 692 Accesses

Abstract

Between 15 and 44 million Americans─approximately one person in every four households─provide long-term, unpaid care for chronically ill or dying relatives. This chapter addresses the plight of those people who care for chronically ill or dying relatives. The chapter begins by reviewing reasons why families have a duty to care for their ill or dying. The chapter then describes typical aspects of family caregiving including care tasks, stressors, potential stress relievers, and impact on caregivers. Next the chapter describes family caregiving with the dementias, the fatal diseases for which the most data on the topic exist. (I believe caregiving with the dementias often resembles caregiving with other fatal diseases such as the cancers and the organ system failures. Many lessons about caregiving with the dementias should apply equally well to those other diseases.) The chapter then discusses interventions aimed at supporting family caregivers of dying patients and closes with suggestions about how health professionals (HPs) in particular can help. To illustrate many of its points, the chapter uses an elderly man who suffers a hip fracture and then requires family care at home for many months. He develops a dementia in the meantime and finally dies after a severely debilitating stroke.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 69.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 89.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 119.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Schulz R, Quittner AL. Caregiving for children and adults with chronic conditions: introduction to the special issue. Health Psychol. 1998;17(2):107–11.

    Article  CAS  PubMed  Google Scholar 

  2. Schulz R, Beach SR. Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA. 1999;282(23):2215–9.

    Article  CAS  PubMed  Google Scholar 

  3. Hebert RS, Schulz R. Caregiving at the end of life. J Palliat Med. 2006;9(5):1174–87.

    Article  PubMed  Google Scholar 

  4. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: “They don’t know what they don’t know.” JAMA. 2004;291(4):483–91.

    Article  CAS  PubMed  Google Scholar 

  5. Zuger A. Arming the unsung heroes of health care. NY Times. 26 Oct 1999; p. F8.

    Google Scholar 

  6. O’Hara D. How can you care for the invisible caregiver? Am Med News. 17 September 2001; 26–7.

    Google Scholar 

  7. Schulz R, Mendelsohn AB, Haley WE, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003;349(20):1936–42.

    Article  CAS  PubMed  Google Scholar 

  8. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hospice J. 2001;15(4):1–18.

    Article  CAS  Google Scholar 

  9. Prigerson HG. Costs to society of family caregiving for patients with end-stage Alzheimer’s disease. N Engl J Med. 2003;349(20):1891–2.

    Article  PubMed  Google Scholar 

  10. Cantor MH. Strain among caregivers: a study of experience in the United States. Gerontologist. 1983;23(6):597–604.

    Article  CAS  PubMed  Google Scholar 

  11. Brody EM. “Women in the middle” and family help to older people. Gerontologist. 1981;21(5):471–80.

    Article  CAS  PubMed  Google Scholar 

  12. Levine C. The loneliness of the long-term care giver. N Engl J Med. 1999;340(20):1587–90.

    Article  CAS  PubMed  Google Scholar 

  13. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American college of critical care medicine task force 2004–2005. Crit Care Med. 2007;35(2):605–22.

    Article  PubMed  Google Scholar 

  14. Callahan D. What do children owe elderly parents? Hast Cen Rep. 1985;15(2):32–7.

    Article  CAS  Google Scholar 

  15. English J. What do grown children owe their parents? In: O’Neill O, Ruddick W, editors. Having children: philosophical & legal reflections on parenthood. NY: Oxford University Press; 1979. p. 351–6.

    Google Scholar 

  16. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583–91.

    Article  CAS  PubMed  Google Scholar 

  17. Diwan S, Houghham GW, Sachs GA. Strain experienced by caregivers of dementia patients receiving palliative care: findings from the palliative excellence in Alzheimer care efforts (PEACE) program. J Palliat Med. 2004;7(6):797–807.

    Article  PubMed  Google Scholar 

  18. Fisher I. Families providing complex medical care, tubes and all. NY Times. June 7, 1998; 1, 21.

    Google Scholar 

  19. Levine C, Zuckerman C. The trouble with families: toward an ethics of accommodation. Ann Intern Med. 1999;130(2):148–52.

    Article  CAS  PubMed  Google Scholar 

  20. Emanuel EJ, Fairclough DL, Slutsman J, et al. Assistance from family members, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341(13):956–63.

    Article  CAS  PubMed  Google Scholar 

  21. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med. 2000;132(6):451–9.

    Article  CAS  PubMed  Google Scholar 

  22. Ory MG, Hoffman RR, Yee JL, Tennstedt S, Schulz TR. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39(2):177–85.

    Article  CAS  PubMed  Google Scholar 

  23. Weitzner MA. The family caregiver of the older cancer patient. Hematol Oncol Clin North Am. 2000;14(1):269–81.

    Article  CAS  PubMed  Google Scholar 

  24. McCorkle R, Pasacreta JV. Enhancing caregiver outcomes in palliative care. Cancer Control. 2001;8(1):36–45.

    CAS  PubMed  Google Scholar 

  25. Newton M, Bell D, Lambert S, Fearing A. Concerns of hospice patient caregivers. ABNF J. 2002;13(6):140–4.

    PubMed  Google Scholar 

  26. Clipp EC, George LK. Patients with cancer and their spouse caregivers. Cancer. 1992;69(4):1074–9.

    Article  CAS  PubMed  Google Scholar 

  27. Almberg BE, Grafstrom M, Winblad B. Caregivers of relatives with dementia: experiences encompassing social support and bereavement. Aging Mental Health. 2000;4(1):82–9.

    Article  Google Scholar 

  28. George LK, Gwyther LP. Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist. 1986;26(3):253–9.

    Article  CAS  PubMed  Google Scholar 

  29. Tilden VP, Tolle SW, Drach LL, Perrin NA. Out-of-hospital death: advance care planning, decedent symptoms, and caregiver burden. J Am Geriatr Soc. 2004;52(4):532–9.

    Article  PubMed  Google Scholar 

  30. Hurley AC, Volicer L. Alzheimer disease: “It’s okay, Mama, if you want to go. It’s okay.” JAMA. 2002;288(18):2324–31.

    Article  PubMed  Google Scholar 

  31. Hinds C. The needs of families who care for patients with cancer at home: are we meeting them? J Adv Nurs. 1985;10(6):575–81.

    Google Scholar 

  32. www.cdc.gov/aginginfo/alzheimers.htm; Accessed 05 March 2016.

  33. www.cdc.gov/nchs/faststats/leading-causes-of-death.htm, Citing data from Health United States 2014, Table 20; Accessed 21 Apr 2016.

  34. Harper GM, Johnston CB, Landefeld CS. Geriatric disorders. In: Papadakis MA, McPhee SJ, Rabow MW, editors. Current diagnosis & treatment 2016. New York: McGraw-Hill Education; 2016. p. 57–60.

    Google Scholar 

  35. Aminoff MJ, Kerchner GA. Nervous system disorders. In: Papadakis MA, McPhee SJ, Rabow MW, editors. Current diagnosis & treatment 2016. New York: McGraw-Hill Education; 2016. p. 1002–7.

    Google Scholar 

  36. Schulz R, O’Brien AT, Bookwala J, Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist. 1995;35(6):771–91.

    Article  CAS  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. Haley WE, Levine EG, Brown SL, Bartolucci AA. Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psycholog Aging. 1987;2(4):323–30.

    Google Scholar 

  39. Schulz R, Newsom J, Mittelmark M, et al. Health effects of caregiving: the caregiver health effects study: an ancillary study of the cardiovascular health study. Ann Behav Med. 1997;19(2):110–6.

    Article  CAS  PubMed  Google Scholar 

  40. Williamson GM, Shaffer DR, Schulz R. Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. Health Psychol. 1998;17(2):152–62.

    Article  CAS  PubMed  Google Scholar 

  41. Cheng WC, Schuckers PL, Hauser G, et al. Psychosocial needs of family caregivers of terminally ill patients. Psychol Rep. 1994;75(3):1243–50.

    Article  CAS  PubMed  Google Scholar 

  42. Kurtz ME, Kurtz JC, Given CW, Given B. Relationship of caregiver reactions and depression to cancer patients’ symptoms, functional states and depression—a longitudinal view. Soc Sci Med. 1995;40(6):837–46.

    Article  CAS  PubMed  Google Scholar 

  43. Quayhagen MP, Quayhagen M. Alzheimer’s stress: coping with the caregiver role. Gerontologist. 1988;28(3):391–6.

    Article  CAS  PubMed  Google Scholar 

  44. Pruchno R, Patrick JH, Burant CJ. African American and white mothers of adults with chronic disabilities: caregiving burden and satisfaction. Fam Relat. 1997;46(4):335–46.

    Article  Google Scholar 

  45. Haley WE, LaMonde LA, Han B, Burtan AM, Schonwetter R. Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model. J Palliat Med. 2003;6(2):215–24.

    Article  PubMed  Google Scholar 

  46. Folkman S, Moskowitz JT. Positive affect and the other side of coping. Am Psychologist. 2000;55(6):647–54.

    Article  CAS  Google Scholar 

  47. Gavzer B. How can we help? Parade Mag. July 16, 2000; 4–5.

    Google Scholar 

  48. Clipp EC, George LK. Caregiver needs and patterns of social support. J Gerontol Soc Sci. 1990;45(3):S102–11.

    Article  CAS  Google Scholar 

  49. Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? an updated meta-analysis. Gerontologist. 2002;42(3):356–72.

    Article  PubMed  Google Scholar 

  50. Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systemic review. Ann Intern Med. 2008;148(2):147–59.

    Article  PubMed  Google Scholar 

  51. Grande GE, Todd CJ, Barclay SIG. Support needs in the last year of life: patient and carer dilemmas. Palliat Med. 1997;11(3):202–8.

    Article  CAS  PubMed  Google Scholar 

  52. Ferrell BR, Borneman T. Pain and suffering at the end of life for older patients and their families. Generations. 1999;23(1):12–7.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Ecumenical Center for Religion and Health, The University of Texas Health Science Center, San Antonio, Texas, USA

    Henry S. Perkins

Authors
  1. Henry S. Perkins
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Henry S. Perkins .

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer Science+Business Media LLC

About this chapter

Cite this chapter

Perkins, H.S. (2016). Care for Family Caregivers. In: A Guide to Psychosocial and Spiritual Care at the End of Life. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-6804-6_9

Download citation

  • DOI: https://doi.org/10.1007/978-1-4939-6804-6_9

  • Published:

  • Publisher Name: Springer, New York, NY

  • Print ISBN: 978-1-4939-6802-2

  • Online ISBN: 978-1-4939-6804-6

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation