“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Methods: Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results: Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions: In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.