Abstract
Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.
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13 May 2020
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Acknowledgements
We thank our community partners: Southland Integrated Services Inc. (Tricia Nguyen, Executive Director and Tiffany Huynh, MSW, Coordinator), Family Caregiver Resources Center (Pauline Le, MSW, Family Consultant), and Alzheimer’s Orange County (Mark Odom, LCSW, Vice President of Programs and Education, Kari Walker, Director of Education, and Min-Thu Co, Vietnamese Community Outreach Coordinator) for their support in participant recruitments. In addition, we thank bilingual research assistants, Linh Tran, RN, BS, Yen Huynh, RN, BS, and Trang Nguyen, RN, BS for their efforts to conducting the individual interviews with participants in Vietnamese language.
Funding
The parent project was supported by two funding sources (Principal Investigator: Jung-Ah Lee, PhD, RN) from (1) Arthur N. Rupe Foundation and (2) University of California Irvine, Institute for Clinical and Translational Science through the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health (NIH), through Grant UL1 TR0001414. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH
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The original version of this article unfortunately contained a mistake. The name of the second author was incorrectly spelled. The correct name of the second author is “Michelle Zaragoza” which is now correctly spelled in this article.
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Nguyen, H., Zaragoza, M., Wussler, N. et al. “I was Confused About How to Take Care of Mom Because this Disease is Different Everyday”: Vietnamese American Caregivers’ Understanding of Alzheimer’s Disease. J Cross Cult Gerontol 35, 217–234 (2020). https://doi.org/10.1007/s10823-020-09396-7
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DOI: https://doi.org/10.1007/s10823-020-09396-7