Trang Nguyen is currently a PhD candidate at the College of Social work, University of South Carolina. She is also a junior scholar at the CHQ Junior Scholar Program. She earned her Bachelor’s and Master’s degrees in Social Work from the College of Social Sciences and Humanities, Vietnam National University. She also worked as social work instructor at the same university in Vietnam. Her research interests include mental health problems, such as depression and dementia, among older adults and their family caregivers. She is also interested in culturally competent and community-based interventions for older adults with mental disorders and international social work. She is currently working on her dissertation project on the adjustment process of Vietnamese family caregivers to their caregiving roles for older adults with dementia. She has presented her works in international conferences and coauthored multiple peer-review articles in social work and education.
Two-fold identity crises and social exclusion: Experiences of Vietnamese family caregivers for older adults with Alzheimer’s Disease
Alzheimer’s Disease (AD) is one of the leading causes of health burdens among older adults aged 60 and over in Vietnam. The care for Vietnamese patients with AD is carried out mostly by non-professional family caregivers who perceive caregiving as a filial or spousal obligation. Lacking social services, family caregivers of patients with AD also struggle with their care duty because of intense financial, physical, and psychosocial difficulties. However, very little is known about psychological difficulties regarding identity changes of both patients and their family caregivers while living with AD. Addressing this issue will help advocate rights and social service development for patients with AD and their family caregivers in Vietnam.
The purpose of this paper is to explore how Vietnamese family caregivers of older adults with AD perceive identity changes in both patients and themselves, and their adjustment to those identity changes. In a grounded theory study, 20 participants who were Vietnamese primary family caregivers of patients with AD from the National Geriatric Hospital (NGH) in Hanoi, Vietnam were interviewed with semi-structured interviewing protocol in Vietnamese language. Total 30 interviews, including 10 follow-up interviews, were conducted. Data collection and analysis were conducted iteratively to exhaust data for theoretical saturation. Interview transcripts in Vietnamese were analyzed with the program MaxQDA 12 and followed a three-phase coding procedure (initial coding, focused coding, and theoretical coding).
Data analysis of 30 interviews with 20 spouse or child caregivers (7 males, 13 females, average age of 61) yields four key themes, including: (1) two-fold identity crises of both the patients and their caregivers; (2) disconnection from the past, (3) social exclusion; and (4) spiritual belief as a mean to adjust to the identity changes. Under the impact of AD, patients lost their previous identity, such as a hardworking breadwinner of the family. Their caregivers were struggling with the identity loss of their loved ones and started questioning their own identities, especially as a spouse. Caregivers experienced the disconnection from the past when they felt a strong attachment to their relatives. Devotion to caregiving excluded them from social life. Upholding spiritual beliefs in family bonding and the mercy of doing good things helped them adjust to the identity crises and cope with caregiving-related burdens. However, further social supports are much needed. The study results advocate the need of appropriate service development, such as counseling and support groups, targeting patients with AD and their family caregivers.