Nguyen Hannah, Zaragoza Michelle, Wussler Natalie, Lee Jung-Ah
Department of Human Services, California State University, Dominguez Hills, Carson, CA, USA.
Department of Social Work, St. Olaf College, Northfield, MN, USA.
J Cross Cult Gerontol. 2020 Jun;35(2):217-234. doi: 10.1007/s10823-020-09396-7.
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.
家庭成员为患有阿尔茨海默病（AD）及相关痴呆症的患者提供了大部分护理。由于亚裔美国家庭对该疾病的了解有限，他们在护理负担方面受到的影响尤为严重。本研究探讨了越南裔美国家庭护理人员对AD的理解以及他们如何为患有AD的家庭成员提供护理。二十名曾为患有AD的家庭成员提供护理的护理人员参与了半结构化定性访谈。采用主题分析法对数据进行分析。在护理人员对AD的理解中确定了几个主题：（a）“现在我明白了”：在初步诊断之前的混乱、震惊和意外；（b）管理家庭成员认知障碍的挫折感；（c）“随波逐流”：应对性格和行为变化的挑战；（d）全天候护理的疲惫；（e）面对症状逐渐恶化“一天天地应对”。参与者对AD的描述突显了他们对该疾病逐渐恶化、复杂且不可预测的性质的共同理解，这使得家庭护理人员每天都面临挑战。研究结果对医护人员与越南裔美国家庭的沟通具有重要意义，即通过具有文化敏感性的教育来减轻护理体验，从而提高家庭识别早期症状并寻求适当帮助的能力。
