"I Lost My Freedom": Exploring the Challenges of Caregiving for Vietnamese American Dementia Family Caregivers

Background: Significant cognitive and behavioral impairments associated with the progression of dementia can make the caregiving experience challenging and stressful. In particular, the need to keep watch over a loved one around-the-clock can intensify caregivers’ loss of freedom and agency over their time, personal space, and social connectedness. While previous studies have looked at the meaning of freedom among dementia family caregivers from an existential perspective, a majority of those studies do not include Asian Americans. Given that Asian Americans are likely to take on the responsibility of caregiving for their family member with dementia, there is a need for research to better understand the experiences of Asian American families, including Vietnamese Americans, to inform culturally-responsive caregiver interventions for this population. Guided by the Sociocultural Stress and Coping Model, the present study explores the meaning of freedom within the sociocultural context of caregiving among Vietnamese Americans caring for a family member with dementia.

Methods: Twenty individual, semi-structured interviews were conducted with Vietnamese American caregivers recruited from ethnic-specific community centers and support groups. Participants ranged from 49 to 79 years in age, were mostly born in Vietnam (n=19) and female (n=17). Caregivers reported providing care to one or both parents (n=10), spouse (n=9), or sibling (n=1). Interviews elicited participants’ knowledge of dementia, challenges in caregiving, and utilization of formal and informal support. Interviews were conducted in Vietnamese and simultaneously transcribed and translated into English by a bilingual team member. Data were coded thematically by a team of three coders.

Results: One salient theme that emerged was the idea of the loss of freedom for caregivers, spanning across physical, social, and psychological dimensions. Caregivers reflected on the “physical” loss of freedom when most of their days are spent to provide watch over the loved one within the home. Caregivers felt that it was not possible to physically leave home, not knowing what might happen to the family member in their absence. In addition to the caregivers’ physical attachment to their loved one, there is a loss of “psychological” freedom described as caregivers’ constant preoccupation with worries, concerns, and routine planning. The loss of physical and psychological freedom was exacerbated by the loss of “social” freedom, described by caregivers as feeling socially isolated from family and friends and not understood by others when needing someone to listen and validate the challenges they faced in caregiving. Caregivers juxtaposed their desire for freedom – physical, social, psychological – with mixed feelings of obligation, duty, and compassion for their loved one, highlighting the tension between personal and cultural values on their conceptualizations of freedom.

Implications: Findings suggest that Vietnamese American caregivers’ sense of obligation to fulfill the familial and cultural expectations of caregiving take precedence over their own need for freedom. Culturally-responsive programs for Vietnamese American dementia caregivers could ease the caregiving burden and distress by framing the need for respite and self-care as taking care of one’s health so that one could continue to take care of loved ones.