Abstract
Caregiving at the end of the life cycle is now widely recognized as a normal role in later life for most women and many men. The caregiving role, however, is not uniformly embraced by all potential caregivers, nor is it experienced in the same manner by those who assume the role. Indeed, a large number of studies conducted over the two past decades have documented differential impacts of caregiving on caregivers’ lives (Anhensel, Pearlin, Mulan, Zarit, & Whitlach, 1995; Farran, Miller, Kaufman, & Davis, 1997). Despite early questions about the utility of research on caregiving and its corresponding costs (Zarit, 1989), the experience of caregiving has been designated by The National Institute on Aging as one of the top priorities for social and behavioral research. Caregiving has also moved on to center stage in the policy arena. Where in the past, the presence of a family caregiver was often the basis for denial of public services, the introduction of the National Family Caregiver Support Program (NFCSP) as Title III-E of the Older American’s Act in 2000 legitimized family caregivers as a group with needs deserving of assistance. Since the initial implementation of the NFCSP in 2000, there has been an explosion of newly developed family support programs at both the state and local levels.
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References
Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing and Health, 24(5), 349–360.
Anhensel, C., Pearlin, L., Mulan, J., Zarit, S., & Whitlach, C. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic.
Bass, D. M., & Noelker, L. S. (1996). The moderating influence of service use on negative caregiving consequences. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 51B, S121.
Beach, S. R., Schulz, R., Yee, J. L., & Jackson, S. (2000). Negative and positive health effects of casing for a disabled spouse: Longitudinal findings from the caregiver health effects study. Psychology and Aging, 15(2), 259–271.
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(4), 607–616.
Bookwala, J., Yee, J. L., Schulz, R., Williamson, G. M., Shaffer, D. R., & Parmelee, P. A. (2000). Caregiving and detrimental mental and physical health outcomes. In G. M. Williamson, D. R. Shaffer, & P. A. Parmelee (Eds.), Physical illness and depression in older adults: A handbook of theory, research, and practice (pp. 93–131). New York: Kluwer Academic Publishers.
Bourgeois, M. S., Schulz, R., & Burgio, L. (1996). Interventions for caregivers of patients with Alzheimer’s disease: A review and analysis of content, process, and outcomes. International Journal of Aging and Human Development, 43, 35–92.
Brubaker, T., & Brubaker, E. (1989). Toward a theory of family caregiving: Dependencies, responsibility, and use of services. In J. Mancini (Ed.), Aging parents and adult-children (pp. 245–257). Lexington, MA: D. C. Heath.
Buckwalter, K. C., Gerdner, L., Kohout, F., Hall, G. R., Kelly, A., Richards, V., et al. (1999). A nursing intervention to decrease depression in family caregivers of persons with dementia. Archives of Psychiatric Nursing, 13(2), 80–88.
Burgio, L. D., Solano, N., Fisher, S. E., Stevens, A., & Gallagher-Thompson, D. (2003). Skill-building: Psychoeducational strategies. In D. W. Coon, D. Gallagher-Thompson, & L. W. Thompson (Eds.), Innovative interventions to reduce dementia caregiver distress: A clinical guide (pp. 119–138). New York: Springer.
Burke, P. (1980). The self: Measurement implications from a symbolic interactionist perspective. Social Psychology Quarterly, 43, 18–29.
Burke, P. (1991). Identity processes and social stress. American Sociological Review, 56, 836–849.
Burke, P., & Reitzes, D. C. (1991). The link between identity and role performance. Social Psychology Quarterly, 44, 83–92.
Burke, P. J., & Tully, J. (1977). The measurement of role identity. Social Forces, 55, 880–897.
Call, C. T., Finch, M. A., Huck, S. M., & Kane, R. A. (1999). Caregiver burden from a social exchange perspective: Caring for older people after hospital discharge. Journal of Marriage and Family, 61, 688–699.
Cantor, M. (1979). Neighbors and friends: An overlooked resource in the informal support system. Research on Aging, 1, 434–463.
Caron, C., & Bowers, B. (2003). Deciding whether to continue, share, or relinquish caregiving: Caregiver views “check this out”. Qualitative Health Research, 13(9), 1252–1271.
Caserta, M. S. (1987). Caregivers to dementia patients: The utilization of community services. The Gerontologist, 27(2), 209–214.
Chappell, N. R. (2002). Burden and well-being among caregivers: Examining the distinction. The Gerontologist, 42(6), 772–780.
Coe, M., & Neufeld, A. (1999). Male caregivers’ use of formal support. Western Journal of Nursing Research, 21(4), 568–588.
Connell, C. M., & Gibson, G. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355–364.
Coon, D. W., Gallagher-Thompson, D., & Thompson, L. W. (2003). Innovative interventions to reduce dementia caregiver distress. New York: Springer.
Corcoran, M. A. (1992). Gender differences in dementia management plans of spousal caregivers: Implications for occupational therapy. American Journal of Occupational Therapy, 46(11), 1006–1012.
Cox, C., & Monk, A. (1993). Hispanic culture and family care of Alzheimer’s patients. Health and Social Work, 18(2), 92–100.
Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980–2000). The Gerontologist, 42(2), 237–272.
Donaldson, C., & Burns, A. (1999). Burden of Alzheimer’s disease: Helping the patient and caregiver. Journal of Geriatric Psychiatry and Neurology, 12(1), 21–28.
Farran, C. J., Miller, B. H., Kaufman, J. E., & Davis, L. (1997). Race, finding meaning, and caregiver distress. Journal of Aging and Health, 9(3), 316–333.
Franks, M. M., Pierce, L. S., & Dwyer, J. W. (2003). Expected parent-care involvement of adult children. Journal of Applied Gerontology, 22(1), 104–117.
Gallagher-Thompson, D. (1994). Direct services and interventions for caregivers: A review of extant programs and a look to the future. In M. H. Cantor (Ed.), Family caregiving: Agenda for the future (pp. 102–122). San Francisco: American Society on Aging.
Gallagher-Thompson, D., Leary, M. C., Ossinalde, C., Romero, J. J., Wald, M. J., & Fernadndex-Gammarra, E. (1997). Hispanic caregivers of older adults with dementia: Cultural issues in outreach. Group: Journal of the Eastern Group Psychotherapy Association, 21(2), 211–232.
Gaugler, J. E., Kane, R. L., & Kane, R. A. (2002). Family care for older adults with disabilities: Toward more targeted and interpretable research. International Journal of Aging and Human Development, 54(3), 205–231.
Gaugler, J. E., Kane, R. L., Kane, R. A., Clay, T., & Newcomer, R. C. (2005). The effects of duration of caregiving on institutionalization. The Gerontologist, 45, 78–89.
Gwyther, L. P., & Ballard, E. L. (1990). Overcoming barriers to appropriate service use: Effective individualized strategies for Alzheimer’s care. Durham, NC: Duke University Center for Study of Aging.
Haley, W. E., West, C. A., Wadley, V. G., Ford, G. R., White, F. A., Barrett, J. J., et al. (1995). Psychological, social, and health impact of caregiving: A comparison of black and white dementia family caregivers and noncaregivers. Psychology and Aging, 10(4), 540–552.
Horowitz, A. (1985). Family caregiving to the frail elderly. In L. A. Maddox (Ed.), Annual review of gerontology and geriatrics. New York: Springer.
Janevic, M. R., & Connell, C. M. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: Recent findings. The Gerontologist, 41(3), 334–347.
Kiecolt-Glaser, J., Marucha, P., Malarkey, W., Mercado, A., & Glaser, R. (1995). Slowing of wound healing by psychological stress. Lancet, 346(8984), 1194–1197.
Knight, B., & Lutzky, S. (1993). A meta-analytic review of interventions for caregiver distress: Recommendations for future research. The Gerontologist, 33, 240.
Knight, B., & McCallum, T. J. (1998). Heart rate reactivity and depression in African-American and White dementia caregivers: Reporting bias or positive coping? Aging and Mental Health, 2(3), 212–221.
Kramer, B. J., & Kipnis, S. (1995). Eldercare and work-role conflict: Toward an understanding of gender differences in caregiver burden. The Gerontologist, 35(3), 340–349.
Langa, K. M., Chernew, M. E., Kabeto, M. U., Herzog, A. R., Ofstedahl, M. B., Willis, R. J., et al. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16(11), 770–778.
Lawton, M. P., Rajagopal, D., Brody, E., & Kleban, M. H. (1992). The dynamics of caregiving for a demented elder among Black and White families. Journal of Gerontology: Series B, Psychological Sciences and Social Sciences, 47, S156–S164.
Lévesque, L., Cossette, S., & Laurin, L. (1995). A multidimensional examination of the psychological and social well-being of caregivers of a demented relative. Research on Aging, 17(3), 332–361.
Lévesque, L., Gendron, C., Vézina, J., Hébert, R., Ducharme, F., Lavoie, J.-P., et al. (2002). The process of a group intervention for caregivers of demented persons living at home: Conceptual framework, components, and characteristics. Aging and Mental Health, 6(3), 239–247.
Merrill, D. (1997). Caring for elderly parents: Juggling work, family, and caregiving in middle and working class families. Westport, CT: Auburn House.
Miller, B. (1989). Adult children’s perceptions of caregiver stress and satisfaction. Journal of Applied Gerontology, 8(3), 275–293.
Miller, B., & Cafasso, L. (1992). Gender differences in caregiving: Fact or artifact. The Gerontologist, 32, 498–507.
Miller, B., Campbell, R. T., Farran, C. J., Kaufman, J. E., & Davis, L. (1995). Race, control, master, and caregiver distress. Journal of Gerontology: Series B, Psychological Sciences and Social Sciences, 50B, S374–S382.
Miller, B., McFall, S., & Montgomery, A. (1991). The impact of elder health, caregiver involvement, and global stress on two dimensions of caregiver burden. Journal of Gerontology, 46(1), S9–S19.
Mittelman, M. S. (2000). Effect of support and counseling on caregivers of patients with Alzheimer’s disease. International Psychogeriatrics, 12(1), 341–346.
Mittelman, M. S., Ferris, S. H., Steinberg, G., Shulman, E., Mackell, J. A., Ambinder, A., et al. (1993). An intervention that delays institutionalization of Alzheimer’s disease patients: Treatment of spouse-caregivers. The Gerontologist, 33(6), 730–740.
Montgomery, R., & Datwyler, M. M. (1990). Women and men in the caregiving role. Generations, 14(3), 34–38.
Montgomery, R., & Kosloski, K. (2000). Family caregiving: Change, continuity and diversity. In R. L. Rubenstein (Ed.), Alzheimer’s disease and related dementias: Strategies in care and research. New York: Springer.
Montgomery, R. J. V., Marquis, J., Schaefer, J., & Kosloski, K. D. (2002). Profiles of respite use. In R. J. V. Montgomery (Ed.), A new look at community-based respite programs (pp. 33–64). New York: Haworth Press.
Montgomery, R. J. V., & Williams, K. (2001). Implications of differential impacts of caregiving for the future research on Alzheimer care. Aging and Mental Health, 5(Suppl. 1), S23–S34.
Montoro-Rodriguez, J., Kosloski, K., & Montgomery, R. J. V. (2003). Evaluating a practice-oriented service model to increase the use of respite services among minorities and rural caregivers. The Gerontologist, 43(6), 916–924.
Mui, A. C. (1992). Caregiver strain among Black and White daughter caregivers: A role theory perspective. The Gerontologist, 32, 203–212.
Parks, S. H., & Pilisuk, M. (1991). Caregiver burden: Gender and the psychological costs of caregiving. The American Journal of Orthopsychiatry, 61(4), 501–509.
Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–595.
Piaget, J. (1971). Biology and knowledge. Chicago: University of Chicago Press.
Pillemer, K., Suitor, J., & Wethington, E. (2003). Integrating theory, basic research, and intervention: Two case studies from caregiving research. The Gerontologist, 43(Special Issue 1), 19–28.
Pruchno, R. A., Burant, C. J., & Peters, N. D. (1997). Typologies of caregiving familes: Family congruence and individual well-being. The Gerontologist, 37, 157–167.
Pyke, K. D., & Bengtson, V. L. (1996). Caring more or less: Individualistic and collectivist system of family eldercare. Journal of Marriage and Family, 58(2), 379–393.
Riley, M. (1983). The family in an aging society: A matrix of latent relationships. Journal of Family Issues, 4, 429–454.
Rossi, A., & Rossi, P. (1990). Of human bonding: Parent-child relations across the life course. New York: Aldine de Gruyter.
Schulz, R., O’Brien, A., Bookwalla, J., & Flesissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates and causes. The Gerontologist, 35, 771–791.
Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L. M., et al. (2002). Dementia caregiver intervention research: In search of clinical significance. The Gerontologist, 42, 589–602.
Schulz, R., & Williamson, G. (1991). A 2-year longitudinal study of depression among Alzheimer’s caregivers. Psychology and Aging, 6, 569–578.
Seltzer, M. M., & Li, L. W. (2000). The dynamics of caregiving: Transitions during a three-year prospective study. The Gerontologist, 40, 165–178.
Shaw, L. B., O’Bryant, S. L., & Meddaugh, D. L. (1991). Support system participation in spousal caregivng: Alzheimer’s disease versus other illness. Journal of Applied Gerontology, 10, 359–371.
Sherrell, K., Buckwalter, K. C., & Morhardt, D. (2001). Negotiating family relationships: Dementia care as a midlife developmental task. Families in Society: The Journal of Contemporary Human Services, 82, 383–392.
Skaff, M. M., & Pearlin, L. I. (1992). Caregiving: Role engulfment and the loss of self. The Gerontologist, 32(5), 656A–664A.
Soerensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356–372.
Stephens, M. A. P., Townsend, A. L., Martire, L. M., & Druley, J. A. (2001). Balancing parent care with other roles: Inter-role conflict of adult daughter caregivers. Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 56(1), P24–P34.
Stryker, S. (1968). Identity salience and role performance. Journal of Marriage and Family, 4, 558–564.
Stryker, S. (1994). Identity theory: Its development, research base, and prospects. Studies in Symbolic Interaction, 16, 9–20.
Stryker, S., & Burke, P. J. (2000). The past, present, and future of an identity theory. Social Psychology Quarterly, 63(4), 284–297.
Stryker, S., & Serpe, R. T. (1982). Commitment, identity salience, and role behavior: A theory and research example. In W. Ickes & E. S. Knowles (Eds.), Personality, roles, and social behavior (pp. 199–218). New York: Springer.
Stuckey, J. C., & Smyth, K. A. (1997). The impact of social resources on the Alzheimer’s disease caregiving experience. Research on Aging, 19(4), 423–441.
Thompson, L. W., Gallagher-Thompson, D., & Haley, W. (1993). Future directions in dementia caregiving intervention research and practice. In D. W. Coon, D. Gallagher-Thompson, & L. W. Thompson (Eds.), Innovative interventions to reduce dementia caregiver distress (pp. 299–311). New York: Springer.
Toseland, R., & Rossiter, C. (1989). Group interventions support family caregivers: A review and analysis. The Gerontologist, 29(4), 438–448.
Van den Heuvel, E. T. P., De Witte, L. P., Schure, L. M., Sanderman, R., & Meyboom-de Jong, B. (2001). Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clinical Rehabilitation, 15(6), 669–677.
Walker, A. J., Pratt, C. C., & Eddy, L. (1995). Informal caregiving to aging family members: A critical review. Family Relations, 44, 402–411.
Whitbourne, S. (1986). The psychological construction of the life span. In J. B. W. Schaie (Ed.), Handbook of the psychology of aging (pp. 594–618). New York: Van Nostrand.
Winslow, B., & Carter, P. (1999). Patterns of burden in wives who care for husbands with dementia. Nursing Clinics of North America, 34, 275–287.
Yee, J. L., & Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: A review and analysis. The Gerontologist, 40, 147–164.
Yin, T., Zhou, Q., & Bashford, C. (2002). Burden on family members: Caring for frail elderly: A meta-analysis of interventions. Nursing Research, 51(3), 199–208.
Youn, G., Knight, B. G., Jeong, H. S., & Benton, D. (1999). Differences in familism values and caregiving outcomes among Korean, Korean American, and White American dementia caregivers. Psychology and Aging, 14(3), 355–364.
Zarit, S. (1989). Do we need another “stress and caregiving” study? The Gerontologist, 29, 147–148.
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Montgomery, R.J.V., Kosloski, K.D. (2013). Pathways to a Caregiver Identity and Implications for Support Services. In: Talley, R., Montgomery, R. (eds) Caregiving Across the Lifespan. Caregiving: Research • Practice • Policy. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-5553-0_8
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