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Research Article

Care Demands and Well-Being of Primary and Secondary Non-Spousal Caregivers of Aging Adults

, BAORCID Icon, , PhD, MPHORCID Icon & , PhDORCID Icon

References

  • Amirkhanyan, A. A., & Wolf, D. A. (2003). Caregiver stress and noncaregiver stress: Exploring the pathways of psychiatric morbidity. The Gerontologist, 43(6), 817–827. doi:10.1093/geront/43.6.817
  • Apesoa-Varano, E. C., Yajarayma, T. F., Reinhard, S. C., Choula, R., & Young, H. M. (2015). Multi-cultural caregiving and caregiver interventions: A look back and a call for future action. The Gerontologist, 39(4), 39–48.
  • Badana, A. N. S., Marino, V., & Haley, W. E. (2017). Racial differences in caregiving: Variation by relationship type and dementia care status. Journal of Aging and Health, 31(6), 925–946. doi:10.1177/0898264317743611
  • Barbosa, A., Figueiredo, D., Sousa, L., & Demain, S. (2011). Coping with the caregiving role: Differences between primary and secondary caregivers of dependent elderly people. Aging & Mental Health, 15(4), 490–499. doi:10.1080/13607863.2010.543660
  • Barker, J. C. (2002). Neighbors, friends, and other nonkin caregivers of community-living dependent elders. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 57(3), S158–S167. doi:10.1093/geronb/57.3.s158
  • Bédard, M., Ranet, D., Molloy, D. W., Lever, J., Pedlar, D., & Dubois, S. (2001). The experience of primary and secondary caregivers caring for the same adult with Alzheimer’s disease. Journal of Mental Health and Aging, 7, 287–296.
  • Brown, R. M., & Brown, S. L. (2014). Informal caregiving: A reappraisal of effects on caregivers. Social Issues and Policy Review, 8(1), 74–102. doi:10.1111/sipr.12002
  • Bullock, K., Crawford, S., & Tennstedt, S. L. (2003). Employment and caregiving: Exploration of African American caregivers. Social Work, 48(2), 150–162. doi:10.1093/sw/48.2.150
  • Cantor, M. H. (1979). Neighbors and friends: An overlooked resource in the informal support system. Research on Aging, 1(4), 434–436. doi:10.1177/016402757914002
  • Chadiha, L. A., Feld, S., & Rafferty, J. (2011). Likelihood of African American primary caregivers and care recipients receiving assistance from secondary caregivers: A rural-urban comparison. Journal of Applied Gerontology, 30(4), 422–442. doi:10.1177/0733464810371099
  • Checkovich, T. J., & Stern, S. (2002). Shared caregiving responsibilities of adult siblings with elderly parents. The Journal of Human Resources, 37(3), 441–478. doi:10.2307/3069678
  • Croghan, C. F., Moone, R. P., & Olson, A. M. (2014). Friends, family, and caregiving among midlife and older lesbian, gay, bisexual, and transgender adults. Journal of Homosexuality, 61(1), 79–102. doi:10.1080/00918369.2013.835238
  • Dilworth-Anderson, P., Boswell, G., & Cohen, M. D. (2007). Spiritual and religious coping values and beliefs among African American caregivers: A qualitative study. Journal of Applied Gerontology, 26(4), 355–369. doi:10.1177/0733464807302669
  • Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science & Medicine, 45(8), 1207–1221. doi:10.1016/S0277-9536(97)00040-3
  • Fredman, L., Bertrand, R. M., Martire, L. M., Hochberg, M., & Harris, E. L. (2006). Leisure-time exercise and overall physical activity in older women caregivers and non-caregivers from the caregiver-SOF study. Preventive Medicine, 43(3), 226–229. doi:10.1016/j.ypmed.2006.04.009
  • Fredriksen-Goldsen, K. I., & Hoy-Ellis, C. P. (2007). Caregiving with pride: An introduction. Journal of Gay & Lesbian Social Services, 18(3), 1–13. doi:10.1300/J041v18n03_01
  • Gaugler, J. E., Edwards, A. B., Femia, E. E., Zarit, S. H., Stephens, M. A. P., Townsend, A., & Greene, R. (2000). Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 55B(4), 247–255. doi:10.1093/geronb/55.4.P247
  • Gaugler, J. E., Mendiondo, M., Smith, C. D., & Schmitt, F. A. (2003). Secondary dementia caregiving and its consequences. American Journal of Alzheimer’s Disease and Other Dementias, 18(5), 300–308. doi:10.1177/153331750301800505
  • Given, B. A., Given, C. W., Stommel, M., & Lin, C. S. (1994). Predictors of use of secondary carers used by the elderly following hospital discharge. Journal of Aging and Health, 6(3), 353–376. doi:10.1177/089826439400600305
  • Gonçalves-Pereira, M. (2017). Toward a family-sensitive practice in dementia. In A. Verdelho & M. Gonçalves-Pereira (Eds.), Neuropsychiatric symptoms of cognitive impairment and dementia (pp. 349–368). Springer International Publishing. doi:10.1007/978-3-319-39138-0_16
  • Gonçalves-Pereira, M., Zarit, S. H., Cardoso, A. M., Alves da Silva, J., Papoila, A. L., & Mateos, R. (2020). A comparison of primary and secondary caregivers of persons with dementia. Psychology and Aging, 35(1), 20–27. doi:10.1037/pag0000380
  • Haley, W. E., Levine, E. G., Brown, S. L., & Bartolucci, A. A. (1987). Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2(4), 323–330. doi:10.1037//0882-7974.2.4.323
  • Haley, W. E., West, C. A. C., Wadley, V. G., Ford, G. R., White, F. A., Barrett, J. J., … Roth, D. L. (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. doi:10.1037/0882-7974.10.4.540
  • Himes, C. L., & Reidy, E. B. (2000). The role of friends in caregiving. Research on Aging, 22(4), 315–336. doi:10.1177/0164027500224001
  • Jervis, L. L., Boland, M. E., & Fickenscher, A. (2010). American Indian family caregivers’ experiences with helping elders. Journal of Cross-cultural Gerontology, 25(4), 355–369. doi:10.1007/s10823-010-9131-9
  • Jiménez-Martín, S., & Prieto, C. V. (2014). Do Spanish informal caregivers come to the rescue of dependent people with formal care unmet needs? Applied Economic Perspectives and Policy, 37(2), 243–259. doi:10.1093/aepp/ppu029
  • Kasper, J. D., Freedman, V. A., & Spillman, B. (2013). National study of caregiving user guide. Retrieved from https://nhats.org/scripts/documents/NSOCII_USER_GUIDE.pdf
  • Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. W., & Jaffe, M. (1963). Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185(12), 914–919. doi:10.1001/jama.1963.03060120024016
  • Kietzman, K. G., Benjamin, A. E., & Matthias, R. E. (2008). Of family, friends, and strangers: Caregiving satisfaction across three types of paid caregivers. Home Health Care Services Quarterly, 27(2), 100–120. doi:10.1080/01621420802022555
  • Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179–186. doi:10.1093/geront/9.3_part_1.179
  • Leung, D. Y. P., Lo, S. K. L., Leung, A. Y. M., Lou, V. W. Q., Chong, A. M. L., Kwan, J. S. K., … Chi, I. (2017). Prevalence and correlates of abuse screening items among community-dwelling Hong Kong Chinese older adults. Geriatrics & Gerontology International, 17(1), 150–160. doi:10.1111/ggi.12655
  • Li, H. (2015). Informal caregivers’ use of the internet for caregiving information. Social Work in Health Care, 54(6), 532–546. doi:10.1080/00981389.2015.1045577
  • Lou, V. W. Q., Kwan, C. W., Chong, M. L. A., & Chi, I. (2015). Associations between secondary caregivers’ supportive behavior and psychological distress of primary spousal caregivers of cognitively intact and impaired elders. The Gerontologist, 55(4), 584–594. doi:10.1093/geront/gnt156
  • Mittelman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161(5), 850–856. doi:10.1176/appi.ajp.161.5.850
  • Mittleman, M. S., Haley, W. E., Clay, O. J., & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67(9), 1592–1599. doi:10.1212/01.wnl.0000242727.81172.91
  • Monin, J. K., & Schulz, R. (2009). Interpersonal effects of suffering in older adult caregiving relationships. Psychology and Aging, 24(3), 681–695. doi:10.1037/a0016355
  • Muraco, A., & Fredriksen-Goldsen, K. (2011). “That’s what friends do”: Informal caregiving for chronically ill midlife and older lesbian, gay, and bisexual adults. Journal of Social and Personal Relationships, 28(8), 1073–1092. doi:10.1177/0265407511402419
  • National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. Retrieved from https://www.nap.edu/read/23606/chapter/1
  • National Alliance for Caregiving. (2015). Caregiving in the U.S. 2015—Appendix B: Detailed methodology. Retrieved from http://www.caregiving.org/caregiving2015/
  • Neal, M. B., Ingersoll-Dayton, B., & Starrels, M. E. (1997). Gender and relationship differences in caregiving patterns and consequences among employed caregivers. The Gerontologist, 37(6), 804–816. doi:10.1093/geront/37.6.804
  • Paúl, C., Teixeira, L., Duarte, N., Pires, C. L., & Ribeiro, O. (2019). Effects of a community intervention program for dementia on mental health: The importance of secondary caregivers in promoting positive aspects and reducing strain. Community Mental Health Journal, 55(2), 296–303. doi:10.1007/s10597-018-0345-6
  • 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), 583–594. doi:10.1093/geront/30.5.583
  • Ramos, B. M. (2004). Culture, ethnicity, and caregiver stress among Puerto Ricans. Journal of Applied Gerontology, 23(4), 469–486. doi:10.1177/0733464804271281
  • Roth, D. L., Mittleman, M. S., Clay, O. J., Madan, A., & Haley, W. E. (2005). Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer’s disease. Psychology and Aging, 20(4), 634–644. doi:10.1037/0882-7974.20.4.634
  • Schulz, R., Hebert, R. S., Dew, M. A., Brown, S. L., Scheier, M. F., Beach, S. R., … Nichols, L. (2007). Patient suffering and caregiver compassion: New opportunities for research, practice, and policy. The Gerontologist, 47(1), 4–13. doi:10.1093/geront/47.1.4
  • Shanas, E., Townsend, P., Wedderburn, D., Friis, H., Milhoj, P., & Stehouwer, J. (1968). Old people in three industrial societies. New York: Atherton Press.
  • Shiu, C., Muraco, A., & Fredriksen-Goldsen, K. (2016). Invisible care: Friend and partner care among older lesbian, gay, bisexual, and transgender (LGBT) adults. Journal of the Society for Social Work and Research, 7(3), 527–546. doi:10.1086/687325
  • Staight, P. R., & Harvey, M. (2010). Caregiver burden: A comparison between elderly women as primary and secondary caregivers for their spouses. Journal of Gerontological Social Work, 15(1/2), 89–104. doi:10.1300/J083v15n01_10
  • Steiner, P. M., Shadish, W. R., Cook, T. D., & Clark, M. H. (2010). The importance of covariate selection in controlling for selection bias in observational studies. Psychological Methods, 15(3), 250–267. doi:10.1037/a0018719
  • Stone, R., Cafferata, G. L., & Sangl, J. (1987). Caregiving of the frail elderly: A national profile. The Gerontologist, 27(5), 616–626. doi:10.1093/geront/27.5.616
  • Tennstedt, S. L., McKinlay, J. B., & Sullivan, L. M. (1989). Informal care for frail elders: The role of secondary caregivers. Gerontologist, 29(5), 677–683. doi:10.1093/geront/29.5.677
  • Tolkacheva, N., van Groenou, M. B., & van Tilburg, T. (2014). Sibling similarities and sharing the care of older parents. Journal of Family Issues, 35(3), 312–330. doi:10.1177/0192513X12470619
  • U.S. Department of Health and Human Services, H. R. a. S. A., National Center for Health Workforce Analysis. (2018). Long-term services and supports: Direct care worker demand projections: 2015-2030. Retrieved from https://bhw.hrsa.gov/sites/default/files/bhw/nchwa/projections/hrsa-ltts-direct-care-worker-report.pdf
  • Wolf, D. A., Freedman, V., & Soldo, B. J. (1997). The division of family labor: Care for elderly parents. Journals of Gerontology. Series B: Psychological Sciences and Social Sciences, 52, 102–109. doi:10.1093/geronb/52b.special_issue.102
  • Wolff, J. L., & Kasper, J. D. (2006). Caregivers of frail elders: Updating a national profile. The Gerontologist, 46(3), 344–356. doi:10.1093/geront/46.3.344
  • Wolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2017). Family caregivers of older adults, 1999-2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 817–827. doi:10.1093/geront/gnx093
  • Woo, K. H., Rhee, K. O., & Choi, S. J. (2004). Korean primary caregivers’ perceptions about secondary caregivers of demented elderly: Are secondary caregivers source of support or stress? Geriatrics & Gerontology International, 4(S1), S101–S103. doi:10.1111/j.1447-0594.2004.00166.x

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