Skip to main content
NCBI home page
American Journal of Alzheimer's Disease and Other Dementias logoLink to American Journal of Alzheimer's Disease and Other Dementias
. 2003 Sep-Oct;18(5):300–308. doi: 10.1177/153331750301800505

Secondary dementia caregiving and its consequences

Joseph E Gaugler 1, Marta Mendiondo 2, Charles D Smith, Frederick A Schmitt 3
PMCID: PMC10833826  PMID: 14569647

Abstract

The purpose of this study was to ascertain variations between primary and “secondary” caregivers (those who play a more supplemental role in the care of a relative). Survey data were collected from a sample of dementia caregivers recruited from the University of Kentucky Alzheimer's Disease Research Center (N = 1,016). Bivariate analyses found that primary and secondary caregivers varied on a number of background characteristics, and regression models indicated that primary caregivers provided a wider range of assistance with instrumental activities of daily living (IADLs), but not help with activities of daily living (ADLs). Primary and secondary caregivers did not differ significantly in reports of subjective health. The findings suggest that future research and interventions should be inclusive of primary and secondary caregivers.

Keywords: primary caregiver, secondary caregiver, caregiver health and well-being, ADL/IADL assistance, dementia, Alzheimer's

Full Text

The Full Text of this article is available as a PDF (109.7 KB).

Contributor Information

Joseph E. Gaugler, Department of Behavioral Science, University of Kentucky, Lexington, Kentucky.

Marta Mendiondo, Sanders-Brown Center on Aging, University of Kentucky, Lexington, Kentucky.

Frederick A. Schmitt, Department of Neurology, University of Kentucky, Lexington, Kentucky.

References

  1. Aneshensel CS, Pearlin LI, Mullan JT, et al.: Profiles in Caregiving: The Unexpected Career. San Diego, CA: Academic Press, 1995. [Google Scholar]
  2. Montgomery RJ, Williams KN: Implications of differential impacts of caregiving for future research on Alzheimer's care. Aging Ment Health. 2001; 5(Suppl 1): S23-S34. [DOI] [PubMed] [Google Scholar]
  3. Gaugler JE, Kane RL, Kane RA: Family care for older adults with disabilities: Toward more targeted and interpretable research. Int J Aging Hum Dev. 2002; 54(3): 205-231. [DOI] [PubMed] [Google Scholar]
  4. Branch LG, Jette AM: Elders’ use of informal long-term care assistance. Gerontologist. 1983; 23(1): 51-56. [DOI] [PubMed] [Google Scholar]
  5. Stephens SA, Christianson JB: Informal Care of the Elderly. Lexington, MA: Lexington Books, 1986. [Google Scholar]
  6. Stone R, Cafferata GL, Sangl J: Caregivers of the frail elderly: A national profile. Gerontologist. 1987; 27(5): 616-626. [DOI] [PubMed] [Google Scholar]
  7. Tennstedt SL, McKinlay JB, Sullivan LM: Informal care for frail elders: The role of secondary caregivers. Gerontologist. 1989; 29(5): 677-683. [DOI] [PubMed] [Google Scholar]
  8. Stoller E, Forster L, Duniho T: Systems of parent care within sibling networks. Res Aging. 1992; 14: 28-49. [Google Scholar]
  9. Franks MM, Stephens MA: Multiple roles of middle-generation caregivers: Contextual effects and psychological mechanisms. J Gerontol. 1992; 47(3): S123-S129. [DOI] [PubMed] [Google Scholar]
  10. Thompson EH Jr, Futterman AM, Gallagher-Thompson D, et al.: Social support and caregiving burden in family caregivers of frail elders. J Gerontol. 1993; 48(5): S245-S254. [DOI] [PubMed] [Google Scholar]
  11. Baillie V, Norbeck J, Barnes LE: Stress, social support, and psychological distress of family caregivers of the elderly. Nurs Res. 1988; 37(4): 217-222. [PubMed] [Google Scholar]
  12. Gaugler JE, Edwards AB, Femia EE, et al.: Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. J Gerontol B Psychol Sci Soc Sci. 2000; 55(4): P247-P255. [DOI] [PubMed] [Google Scholar]
  13. Stommel M, Given BA, Given CW, et al.: The impact of the frequency of care activities on the division of labor between primary caregivers and other providers. Res Aging. 1995; 17: 412-433. [Google Scholar]
  14. Dilworth-Anderson P, Williams SW, Cooper T: Family caregiving to elderly African Americans: Caregiver types and structures. J Gerontol B Psychol Sci Soc Sci. 1999; 54(4): S237-S241. [DOI] [PubMed] [Google Scholar]
  15. Bourgeois MS, Beach S, Schulz R, et al.: When primary and secondary caregivers disagree: Predictors and psychosocial consequences. Psychol Aging. 1996; 11(3): 527-537. [DOI] [PubMed] [Google Scholar]
  16. Kleban MH, Brody EM, Schoonover CB, et al.: Family help to the elderly: Perceptions of sons-in-law regarding parent care. J Marriage Fam. 1989; 51: 303-312. [Google Scholar]
  17. Lieberman MA, Fisher L: The impact of chronic illness on the health and well-being of family members. Gerontologist. 1995; 35(1): 94-102. [DOI] [PubMed] [Google Scholar]
  18. Pruchno RA, Peters ND, Burant CJ: Mental health of coresident family caregivers: Examination of a two-factor model. J Gerontol B Psychol Sci Soc Sci. 1995; 50(5): P247-P256. [DOI] [PubMed] [Google Scholar]
  19. Bedard M, Raney D, Molloy DW, et al.: The experience of primary and secondary caregivers caring for the same adult with Alzheimer's disease. J Ment Health Aging. 2001; 7: 287-296. [Google Scholar]
  20. Schmitt FA, Davis DG, Wekstein DR, et al.: “Preclinical” AD revisited: Neuropathology of cognitively normal older adults. Neurology.2000; 55(3): 370-376. [DOI] [PubMed] [Google Scholar]
  21. Kane RL: Physiological well-being and health. In Kane RL, Kane RA (eds.): Assessing Older Persons: Measures, Meanings, and Practical Applications. New York: Oxford University Press, 2000. [Google Scholar]
  22. Folstein MF, Folstein SE, McHugh PR: “Mini-Mental State.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975; 12(3): 189-198. [DOI] [PubMed] [Google Scholar]
  23. Reisberg B, Ferris S, de Leon M, et al.: The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982; 139(9): 1136-1139. [DOI] [PubMed] [Google Scholar]
  24. Cantor MH: Strain among caregivers: A study of experience in the United States. Gerontologist. 1983; 23(6): 597-604. [DOI] [PubMed] [Google Scholar]
  25. Jarrott SE, Zarit SH, Stephens MAP, et al.: Effects of adult day service programs on time usage by employed and non-employed caregivers. J Appl Gerontol. 2000; 19: 371-388. [Google Scholar]

Articles from American Journal of Alzheimer's Disease and Other Dementias are provided here courtesy of SAGE Publications

RESOURCES