389
Views
1
CrossRef citations to date
0
Altmetric
Research Articles

Female caregivers’ contextual complexities and familial power structures within Alzheimer’s care

ORCID Icon, ORCID Icon & ORCID Icon
Pages 446-464 | Received 29 Jun 2022, Accepted 22 Sep 2022, Published online: 26 Oct 2022

References

  • Abrams, J. A., Hill, A., & Maxwell, M. (2019). Underneath the mask of the strong black woman schema: Disentangling influences of strength and self-silencing on depressive symptoms among US black women. Sex Roles, 80(9–10), 517–526. https://doi.org/10.1007/s11199-018-0956-y
  • Ahl, H. (2007). A Foucauldian framework for discourse analysis. In H. Neergard, & J. P. Ulhøi (Eds.), Handbook for qualitative research methods in entrepreneurship (pp. 216–229). Elgar Publishing.
  • Alzheimer’s Association (2020). Alzheimer’s Association report: 2020 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 16(3), 391–460. https://doi.org/10.1002/alz.12068
  • Alzheimer’s Association (2022). 2022 Alzheimer’s disease facts and figures. Alzheimer’s Association. Retrieved May 25, 2022, from https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
  • American Psychiatric Association (2013). Neurocognitive disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association Publishing.
  • Arribas-Allon, M., & Walkerdine, V. (2008). Foucauldian discourse analysis. In C. Willig, & W. Stainton-Rogers (Eds.), The SAGE handbook of qualitative research in psychology (pp. 91–108). SAGE Publishing.
  • Aspesoa-Varano, E. C., Reinhard, S. C., & Choula, R. (2015). Multicultural caregiving and caregiving interventions: A look back and call for future action. Generations, 39(4), 39–48.
  • Cacchione, P. Z. (2019). The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. Clinical Nursing Research, 28(8), 907–910. https://doi.org/10.1177/1054773819876130
  • Castaño, E. (2020). Discourse analysis as a tool for uncovering the lived experience of dementia: Metaphor framing and well-being in early-onset dementia narratives. Discourse & Communication, 14(2), 115–132. https://doi.org/10.1177/1750481319890385
  • Cheng, S. T., Mak, E. P., Lau, R. W., Ng, N. S., & Lam, L. C. (2016). Voices of Alzheimer caregivers on positive aspects of caregiving. The Gerontologist, 56(3), 451–460. https://doi.org/10.1093/geront/gnu118
  • Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine, Schulz, R., & Eden, J. (Eds.). (2022). Families Caring for an Aging America. National Academies Press (US). Retrieved June 26, 2022, from https://www.ncbi.nlm.nih.gov/books/NBK396401/%20
  • 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. https://doi.org/10.1093/geront/42.2.237
  • Dowling, M., & Cooney, A. (2012). Research approaches related to phenomenology: negotiating a complex landscape. Nurse Researcher, 20(2), 21–27. https://doi.org/10.7748/nr2012.11.20.2.21.c9440
  • Dunham, C. C., & Cannon, J. H. (2008). “They’re still in control enough to be in control”: Paradox of power in dementia caregiving. Journal of Aging Studies, 22(1), 45–53. https://doi.org/10.1016/j.jaging.2007.02.003
  • Edwards, V. J., Bouldin, E. D., Taylor, C. A., Olivari, B. S., & McGuire, L. C. (2020). Characteristics and health status of informal unpaid caregivers – 44 states, District of Columbia, and Puerto Rico, 2015–2017. MMWR. Morbidity and Mortality Weekly Report, 69(7), 183–188. https://doi.org/10.15585/mmwr.mm6907a2
  • Fairclough, N. (1992). Intertextuality in critical discourse analysis. Linguistics and Education, 4(3–4), 269–293. https://doi.org/10.1016/0898-5898(92)90004-G
  • Fairclough, N. (2011). Semiotic aspects of social transformation and learning. In R. Rogers (Ed.), An introduction to discourse analysis in education (2nd ed.). Routledge.
  • Gallagher-Thompson, D., Choryan Bilbrey, A., Apesoa-Varano, E. C., Ghatak, R., Kim, K. K., & Cothran, F. (2020). Conceptual framework to guide intervention research across the trajectory of dementia caregiving. The Gerontologist, 60(Supplement_1), S29–S40. https://doi.org/10.1093/geront/gnz157
  • Greenberg, N. E., Wallick, A., & Brown, L. M. (2020). Impact of COVID-19 pandemic restrictions on community-dwelling caregivers and persons with dementia. Psychological Trauma: Theory, Research, Practice and Policy, 12(S1), S220–S221. https://doi.org/10.1037/tra0000793
  • Harrington, C. C. (2018). Family dementia caregivers’ perceptions of the Virtual Dementia Tour: A changed reality. Sigma Repository. http://hdl.handle.net/10755/22066
  • Harrington, C. C. (2021). I was not expecting that! Ethical dilemmas in Alzheimer’s disease and Alzheimer’s disease related dementia caregiving research. Clinical Nursing Research, 30(5), 527–528. https://doi.org/10.1177/10547738211021673
  • Hood, R. (2016). Combining phenomenological and critical methodologies in qualitative research. Qualitative Social Work, 15(2), 160–174. https://doi.org/10.1177/1473325015586248
  • Jenkins, E. J. (2002). Black women and community violence. Women & Therapy, 25(3–4), 29–44. https://doi.org/10.1300/J015v25n03_03
  • Jutkowitz, E., Kane, R. L., Gaugler, J. E., Maclehose, R. F., Dowd, B., & Kuntz, K. M. (2017). Societal and family lifetime cost of dementia: Implications for policy. Journal of the American Geriatrics Society, 65(10), 2169–2175. https://doi.org/10.1111/jgs.15043
  • Keeler, A. R., Siegel, J. T., & Alvaro, E. M. (2014). Depression and help seeking among Mexican Americans: The mediating role of familism. Journal of Immigrant and Minority Health, 16(6), 1225–1231. https://doi.org/10.1007/s10903-013-9824-6
  • Kentucky Cabinet for Health and Family Services (2022). 2020 Kentucky annual long-term care services report. Retrieved June 24, 2022, from https://chfs.ky.gov/agencies/os/oig/dcn/surveyreports/2020KentuckyAnnualLTCServicesReport.pdf
  • Koerner, S. S., & Shirai, Y. (2012). The negative impact of global perceptions of and daily care-related family conflict on Hispanic caregivers: Familism as a potential moderator. Aging & Mental Health, 16(4), 486–499. https://doi.org/10.1080/13607863.2011.638905
  • Lawler, L., & Nale, J. (Eds.). (2015a). Subjectification. In The Cambridge Foucault Lexicon (p. 496). Cambridge University Press. https://doi.org/10.1017/CBO9781139022309.08753
  • Lawler, L., & Nale, J. (Eds.). (2015b). Institution. In The Cambridge Foucault Lexicon (pp. 217–223). Cambridge University Press.
  • Lawler, L., & Nale, J. (Eds.). (2015c). Governmentality. In The Cambridge Foucault Lexicon (pp. 175–181). Cambridge University Press.
  • Lazar, M. (2014). Feminist critical discourse analysis: Relevance for current gender and language research. In S. Elrich, M. Meyerhoff, & J. Holmes (Eds.), The handbook of language, gender, and sexuality (2nd ed., pp. 180–202). Wiley Blackwell Publishing.
  • Lazar, M. M. (2007). Feminist critical discourse analysis: Articulating a feminist discourse praxis. Critical Discourse Studies, 4(2), 141–164. https://doi.org/10.1080/17405900701464816
  • Liao, K., Wei, Y. H., & Yin, M. (2020). The misunderstood schema of the strong black woman: Exploring its mental health consequences and coping responses among African American women. Psychology of Women Quarterly, 44(1), 84–104. https://doi.org/10.1177/0361684319883198
  • Losada, A., Marquez-Gonzalez, M., Knight, B. G., Yanguas, J., Sayegh, P., & Romero-Moreno, R. (2010). Psychosocial factors and caregivers’ distress: Effects of familism and dysfunctional thoughts. Aging & Mental Health, 14(2), 193–202. https://doi.org/10.1080/13607860903167838
  • McGee, J. G., Myers, D. R., & Meraz, R. (2021). Caring for a family member with early-stage Alzheimer’s disease: Caregiver perceptions, connections, and relational dynamics with the sacred. Journal of Religion, Spirituality & Aging, 34, 196–207. https://doi.org/10.1080/15528030.2021.1934771
  • Meyer, O. L., Nguyen, K. H., Dao, T. N., Vu, P., Arean, P., & Hinton, L. (2015). The sociocultural context of caregiving experiences for Vietnamese dementia family caregivers. Asian American Journal of Psychology, 6(3), 263–272. https://doi.org/10.1037/aap0000024
  • Miller-Ott, A. E., Cooper, R. A., & Lobdell, E. (2022). “It just shifted everything in our family dynamic.” Recalibration within the family system in response to Alzheimer’s disease. Journal of Family Communication, 22(2), 156–174. https://doi.org/10.1080/15267431.2022.2058947
  • Mullet, D. R. (2018). A general critical discourse analysis framework for educational research. Journal of Advanced Academics, 29(2), 116–142. https://doi.org/10.1177/1932202X18758260
  • National Institute of Health (2022). 2019–2023 Trans-NIH strategic plan for women’s health research. Office of Research on Women’s Health. Retrieved June 24, 2022, from https://orwh.od.nih.gov/about/trans-nih-strategic-plan-womens-health-research
  • North Carolina Department of Health and Human Services (2022). Nursing facilities with Alzheimer’s beds licensed by the state of North Carolina. Division of Health Service Regulation. Retrieved June 24, 2022, from https://info.ncdhhs.gov/dhsr/nhlcs/pdf/achscubeds.pdf
  • Ohio State Bar Association (2016). Laws protect employees who serve as caregivers (p. 1). Retrieved July 16, 2022, from https://www.ohiobar.org/ForPublic/Resources/LawYouCanUse/Pages/Laws-Protect-Employees-Who-Serve-as-Caregivers.aspx
  • Pappas, S. (2021). Effective therapy with black women. Monitor on Psychology, 52(8), 38. Retrieved May 25, 2022, from https://www.apa.org/monitor/2021/11/ce-therapy-black-women
  • Pickering, C. E. Z., Yefimova, M., Maxwell, C., Puga, F., & Sullivan, T. (2020). Daily context for abusive and neglectful behavior in family caregiving for dementia. The Gerontologist, 60(3), 483–493. https://doi.org/10.1093/geront/gnz110
  • Pinquart, M., & Sörensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45(1), 90–106. https://doi.org/10.1093/geront/45.1.90
  • Powers, S. M., & Whitlatch, C. J. (2016). Measuring cultural justifications for caregiving in African American and White caregivers. Dementia, 15(4), 629–645. https://doi.org/10.1177/1471301214532112
  • Rajan, K. B., Weuve, J., Barnes, L. L., McAninch, E. A., Wilson, R. S., & Evans, D. A. (2021). Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020–2060). Alzheimer’s & Dementia, 17(12), 1966–1975. https://doi.org/10.1002/alz.12362
  • Rozario, P. A., & DeRienzis, D. (2008). Familism beliefs and psychological distress among African American women caregivers. The Gerontologist, 48(6), 772–780. https://doi.org/10.1093/geront/48.6.772
  • Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18(2), 179–183. https://doi.org/10.1002/nur.4770180211
  • Sayegh, P., & Knight, B. G. (2011). The effects of familism and cultural justification on the mental and physical health of family caregivers. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 66(1), 3–14. https://doi.org/10.1093/geronb/gbq061
  • Sheehan, O. C., Haley, W. E., Howard, V. J., Huang, J., Rhodes, J. D., & Roth, D. L. (2021). Stress, burden, and well-being in dementia and non-dementia caregivers: Insights from the caregiving transitions study. The Gerontologist, 61(5), 670–679. https://doi.org/10.1093/geront/gnaa108
  • Teo, P. (2000). Racism in the news: A critical discourse analysis of news reporting in two Australian newspapers. Discourse & Society, 11(1), 7–49. https://doi.org/10.1177/0957926500011001002
  • Thorne, S. (2016). Interpretive description: Qualitative research for applied practice. Routledge.
  • Tian, Z., Xiong, C., Wang, Y., Tao, H., Zhou, S., & Yan, J. (2022). Association between familism and mental health in dementia caregivers: A systematic review and meta-analysis. Psychogeriatrics, 22(4), 469–477. https://doi.org/10.1111/psyg.12843
  • Troutman-Jordan, M., & Kazemi, D. M. (2020). COVID-19’s impact on the mental health of older adults: Increase in isolation, depression, and suicide risk. An urgent call for action. Public Health Nursing, 37(5), 637–638. https://doi.org/10.1111/phn.12774
  • United Health Foundation (2022). 2020 America’s health rankings annual report. United Health Foundation. Retrieved June 24, 2022, from https://www.americashealthrankings.org/
  • US Government Accountability Office (2022). Retirement security: Some parental and spousal caregivers face financial risks. US Government Printing Office. Retrieved May 25, 2022, from https://www.gao.gov/products/gao-19-382
  • Van Dijk, T. A. (1993). Principles of critical discourse analysis. Discourse & Society, 4(2), 249–283. https://doi.org/10.1177/0957926593004002006
  • van Manen, M. (1984). Practicing phenomenological writing. Phenomenology + Pedagogy, 2(1), 36–69.
  • Van Manen, M. (2016). Phenomenology of practice: Meaning given methods in phenomenological research and writing. Routledge.
  • World Health Organization (2022). Mental health and psychosocial considerations during the COVID-19 outbreak. Retrieved May 25, 2020, from https://www.who.int/docs/default-source/coronaviruse/mental-health-considerations.pdf
  • Xu, J., Liu, P. J., & Beach, S. (2021). Multiple caregivers, many minds: Family discord and caregiver outcomes. The Gerontologist, 61(5), 661–669. https://doi.org/10.1093/geront/gnaa067
  • Yu, D. S. F., Cheng, S., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1–26. https://doi.org/10.1016/j.ijnurstu.2017.10.008

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.