Research in Caregiving

Chapter
Part of the Caregiving: Research • Practice • Policy book series (CARE)

Abstract

Between 1950 and 2050, the proportion of those aged 65 years and older in the population will more than double (Himes, Elderly Americans, 2001). As the population ages, the likelihood of frailty, dementia, and disabling illness increases. This unprecedented growth in the elderly population in need of support presents multiple challenges for society and in particular, for families who are frequently called upon to act as caregivers for impaired spouses, parents, and siblings. A tremendous degree of burden and psychological distress are associated with the caregiving role (Schulz et al., Gerontologist 35:771–791, 1995). For this reason, research is essential to identify those caregivers who are most susceptible to adverse outcomes and to identify and alleviate the burden associated with different aspects of the caregiving experience. Furthermore, innovative caregiving research can lead to the development of constructive interventions that will aid families, older adults, and society at large.

References

  1. Aneshengel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch, C. J. (1995). Profiles in caregiving: The unexpected career. San Diego: Academic Press.Google Scholar
  2. Arno, P. S., Levine, C., & Memmott, M. M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182–188.PubMedCrossRefGoogle Scholar
  3. Baumgarten, M., Battista, R. N., Infanti-Rivard, C., Hanley, J. A., Becker, R., & Gauthier, S. (1992). The psychological and physical health of family members caring for an elderly person with dementia. Journal of Clinical Epidemiology, 41, 61–70.CrossRefGoogle Scholar
  4. Beck, C., Heacock, P., Mercer, S. O., Walls, R. C., Rapp, C. G., & Vogelpohl, T. S. (1997). Improving dressing behavior in cognitively impaired nursing home residents. Nursing Research, 46, 126–132.PubMedCrossRefGoogle Scholar
  5. Bodnar, J. C., & Kiecolt-Glaser, J. K. (1994). Caregiver depression after bereavement: Chronic stress isn’t over when it’s over. Psychology of Aging, 9, 372–380.CrossRefGoogle Scholar
  6. Bookwala, J., & Schulz, R. (2000). A comparison of primary stressors, secondary stressors, and depressive symptoms between elderly caregiving husbands and wives: The caregiver health effects study. Psychology and Aging, 15, 607–616.PubMedCrossRefGoogle Scholar
  7. Cohen, D. (2000). Caregivers for persons with Alzheimer’s disease. Current Psychiatry Reports, 2, 32–39.PubMedCrossRefGoogle Scholar
  8. Cohen, D., & Eisdorfer, C. (1995). Caring for your aging parents: A planning and action guide. New York: G. P. Putnam’s Son.Google Scholar
  9. Cohen, D., Llorente, M., & Eisdorfer, C. (1998). Homicide-suicide in older persons. American Journal of Geriatric Psychiatry, 155, 390–396.Google Scholar
  10. Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic and cultural differences in dementia caregiving: Review and analysis. Gerontologist 37, 355–364.PubMedCrossRefGoogle Scholar
  11. Covinsky, K. E., Eng, C., Lui, L., Sands, L. P., Sehgal, A. R., Walter, L. C., et al. (2001). Reduced employment in caregivers of frail elders: Impact of ethnicity, patient clinical characteristics, and caregiver characteristics. Journal of Gerontology, 56A, M707–M713.Google Scholar
  12. Czaja, S. J., Eisdorfer, C., & Schulz, R. (2000). Future directions in caregiving: Implications for intervention research. In R. Schulz (Ed.), Handbook on dementia caregiving: Evidence-based interventions for family caregivers (pp. 283–312). New York: Springer.Google Scholar
  13. Depp, C., Sorocco, K., Kasl-Godley, J., Thompson, L., Rabinowitz, Y., & Gallagher-Thompson, D. (2005). Caregiver self-efficacy, ethnicity, and kinship differences in dementia caregivers. American Journal of Geriatric Psychiatry, 13, 787–794.PubMedGoogle Scholar
  14. Drinka, T. J., Smith, J. C., & Drinka, P. J. (1987). Correlates of depression and burden for informal caregivers of patients in a geriatric referral clinic. Journal of the American Geriatrics Society, 35, 522–525.PubMedGoogle Scholar
  15. Dura, J., Stukenberg, K., & Kiecolt-Glaser, J. (1991). Anxiety and depressive disorders in adult children caring for demented parents. Psychology and Aging, 6, 467–473.PubMedCrossRefGoogle Scholar
  16. Eisdorfer, C., Czaja, S. J., Loewenstein, D. A., Rubert, M. P., Arguelles, S., Mitrani, V. B., et al. (2003). The effect of a family therapy and technology-based intervention on caregiver depression. Gerontologist, 43, 521–531.PubMedCrossRefGoogle Scholar
  17. Gallagher-Thompson, D., Arean, P., Coon, D., Menendez, A., Takagi, K., Haley, W., et al. (2000). Development and implementation of intervention strategies for culturally diverse caregiving populations. In R. Schulz (Ed.), Handbook on dementia caregiving: Evidence-based interventions for family caregivers (pp. 151–186). New York: Springer.Google Scholar
  18. Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M. P., Schinfeld, S., & Hauck, W. W. (2003). Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH initiative. Gerontologist, 43, 532–546.PubMedCrossRefGoogle Scholar
  19. Goode, K. T., Haley, W. E., Roth, D. L., & Ford, G. R. (1998). Predicting longitudinal changes in caregiver physical and mental health: A stress process model. Health Psychology, 17, 190–198.PubMedCrossRefGoogle Scholar
  20. Grafstrom, M., Fratiglioni, L., Sandman, P. O., & Winblad, B. (1992). Health and social consequences for relatives of demented and non-demented elderly. Journal of Clinical Epidemiology, 45, 867–870.CrossRefGoogle Scholar
  21. Haley, W. E. (1997). The family caregiver’s role in Alzheimer’s disease. Neurology, 48(Suppl. 6), S25–S29.Google Scholar
  22. Haley, W. E., Roth D. L., Coleton, M. I., Ford, G., West, C., Collins, R., et al. (1996). Appraisal, coping, and social support as mediators of well-being in black and white family caregivers of patients with Alzheimer’s disease. Journal of Consulting and Clinical Psychology, 64, 121–129.PubMedCrossRefGoogle Scholar
  23. Harrow, B. S., Mahoney, D. F., Mendelsohn, A. B., Ory, M. G., Coon, D. W., Belle, S. H., et al. (2004). Variation in cost of informal caregiving and formal service use for people with Alzheimer’s disease. American Journal of Alzheimer’s Disease and Other Dementias, 19, 299–308.PubMedCrossRefGoogle Scholar
  24. Himes, C. L. (2001). Elderly Americans. Washington, DC: Population Reference Bureau.Google Scholar
  25. Hobbs, B. F., & Damon, B. L. (1996). 65 + in the United States. In United States Bureau of the Census: Current Population Reports, Special Studies. Washington, DC: U.S. Government Printing House.Google Scholar
  26. John, R., & McMillian, B. (1998). Exploring caregiver burden among Mexican Americans: Cultural prescriptions, family dilemmas. Journal of Aging and Ethnicity, 1, 93–111.Google Scholar
  27. Kiecolt-Glaser, J., Dura, J., Speicher, C., Trask, O. J., & Glaser, R.  (1991a). Spousal caregivers of dementia victims: Longitudinal changes in immunity and health. Psychosomatic Medicine, 53, 354.Google Scholar
  28. Kiecolt-Glaser, J. K., Glaser, R., Shuttleworth, E. C., Dyer, C. S., Ogrocki, B. S., & Speicher, C. E. (1991b). Chronic stress and immunity in family caregivers of Alzheimer’s disease victims. Psychosomatic Medicine, 49, 523–535.Google Scholar
  29. Langa, K. M., Chernew, M. E., Kabeto, M. U., Herzog, A. R., Ofstedal, M. B., Willis, R. J., et al. (2001). National estimate of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16, 770–778.PubMedCrossRefGoogle Scholar
  30. MacPhail, J. (1993). Intergenerational caring in professional and family life. Geriatric Nurse, 14, 104–107.CrossRefGoogle Scholar
  31. McEwen, B. S. (1998). Protective and damaging effects of stress mediators. New England Journal of Medicine, 3, 171–179.Google Scholar
  32. Meshifedyan, G.,  McCusker, J., Bellavance, F., & Baumgarten, M. (1998). Factors associated with symptoms of depression among informal caregivers of demented elders in the community. Gerontologist, 38, 247–253.CrossRefGoogle Scholar
  33. Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G., Ambinder, A., Mackell, J. A., et al. (1995). A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. Gerontologist, 35, 792–802.PubMedCrossRefGoogle Scholar
  34. Mittelman, M. S., Ferris, S. H., Shulma, E., Steinberg, G., & Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer’s disease: A randomized control trial. Journal of the American Medical Association, 276, 1725–1731.PubMedCrossRefGoogle Scholar
  35. Mittelman, M. S., Roth, D. L., Haley, W. E., & Zarit, S. H. (2004). Effects of a caregiver intervention on negative caregiver appraisals of behavior problems in patients with Alzheimer’s disease: Results of a randomized trial. Journal of Gerontology Series B: Psychological Sciences and Social Sciences, 59, P27–P34.CrossRefGoogle Scholar
  36. Mintzer, J. E., Rupert, M. P., Loewenstein, D., Gamez, E., Millor, A., Quinteros, R., et al. (1992). Daughters caregiving for Hispanic and non-Hispanic Alzheimer’s patients: Does ethnicity make a difference? Community Mental Health Journal, 28, 293–303.PubMedCrossRefGoogle Scholar
  37. National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S.: Findings from a national survey. Washington, DC: Authors.Google Scholar
  38. Newsome, J. T., & Schulz, R. (1998). Caregiving from the recipient’s perspective: Negative reactions to being helped. Health Psychology, 17, 172–181.CrossRefGoogle Scholar
  39. Paveza, G. J., Cohen, D., Eisdorfer, C., Freels, S., Semla, T., Ashford, J., et al. (1992). Severe family violence and Alzheimer’s disease: Prevalence and risk factors. Gerontologist, 32, 493–497.PubMedCrossRefGoogle Scholar
  40. Pillemer, K., & Suitor, J. (1996). Family stress and social support among caregivers to persons with Alzheimer’s disease. In G. R. Pierce, B. R. Sarason & I. G. Sarason (Eds.), Handbook of social support and the family (pp. 467–494). New York: Plenum Press.Google Scholar
  41. Pruchno, R. A., & Potashnik, S. L. (1989). Caregiving spouses: Physical and mental health in prospective. Journal of the American Geriatric Society, 37, 697–705.Google Scholar
  42. Pruchno, R. A., & Resch, N. L. (1989). Husbands and wives as caregivers: Antecedents of depression and burden. Gerontologist, 29, 159–165.PubMedCrossRefGoogle Scholar
  43. Rose-Rego, S. K., Strauss, M. E., & Smyth, K. A. (1998). Differences in the perceived well-being of wives and husbands caring for persons with Alzheimer’s disease. Gerontologist, 38, 224–230.PubMedCrossRefGoogle Scholar
  44. Scanlan, J. M., Vitaliano, P. P., Zhang, J., Savage, M., & Ochs, H. D. (2001). Lymphocyte proliferation is associated with gender, caregiving, and psychosocial variable in older adults. Journal of Behavioral Medicine, 24, 537–559.PubMedCrossRefGoogle Scholar
  45. Schulz, R., & Williamson, G. M. (1991). A 2-year longitudinal study of depression among Alzheimer’s caregivers. Psychology and Aging, 6, 569–578.PubMedCrossRefGoogle Scholar
  46. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282, 2215–2260.PubMedCrossRefGoogle Scholar
  47. Schulz, R., Visintainer, P., & Williamson, G. M. (1990). Psychiatric and physical morbidity effects of caregiving. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 45, P181–P191.Google Scholar
  48. Schulz, R., O’Brien, A. T., Bookwala, J., & Fleisser, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist, 35, 771–791.PubMedCrossRefGoogle Scholar
  49. Schulz, R., O’Brien, A. T., Czaja, S., Ory, M., Norris, R., Martitire, L. M., et al. (2002). Dementia caregiver intervention research: In search of clinical significance. Gerontologist, 42, 589–602.PubMedCrossRefGoogle Scholar
  50. Spector, J., & Tampi, R. (2005). Caregiver depression. Annals of Long-Term Care, 13, 34–40.Google Scholar
  51. Stoltz, P., Uden, G., & Willman, A. (2004). Support for family carers who care for an elderly person at home—a systematic literature review. Scandinavian Journal of Caring Services, 18, 111–119.CrossRefGoogle Scholar
  52. Vitaliano, P. P., Russo, J., Young, H. M., Teri, L., & Maiuro, R. D. (1991). Predictors of burden in spouse caregivers of individuals with Alzheimer’s disease. Psychology and Aging, 6, 392–401.PubMedCrossRefGoogle Scholar
  53. Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychology Bulletin, 6, 946–972.CrossRefGoogle Scholar
  54. Volicer, L. (2001). Management of severe Alzheimer’s disease and end-of-life issues. Clinics in Geriatric Medicine, 17, 377–391.PubMedCrossRefGoogle Scholar
  55. Wu, H., Wang, J., Cacioppo, J. T., Glaser, R., Kiecolt-Glaser, J. K., & Malarkey, W. B. (1999). Chronic stress associated with spousal caregiving of patients with Alzheimer’s dementia is associated with down regulation of B-lymphocyte GH mRNA. Journal of Gerontology: Series A: Biological Science and Medical Science, 54, M212–M215.Google Scholar
  56. Yee, J. L., & Schultz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: A review and analysis. Gerontologist, 40, 147–164.PubMedCrossRefGoogle Scholar
  57. Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist, 26, 260–266.PubMedCrossRefGoogle Scholar
  58. Zarit, S. H., Johansson, L., & Jarrott, S. E. (1998). Family caregiving: Stresses, social programs, and clinical interventions. In I. H. Nordhus, G. R. VanderBos, S. Berg & P. Fromholt (Eds.), Clinical geropsychology (pp. 345–360). Washington, DC: American Psychological Association.Google Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  1. 1.Division of Geriatric Psychiatry, Department of Psychiatry and Behavioral SciencesMiller School of Medicine/University of MiamiMiamiUSA

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