Dementia Caregiver Burden Among Korean Immigrants in the United States: Qualitative Inquiry Using the Stress Process Perspective

Background and Purpose:

More than 11 million of the US population provide unpaid care for their relative with Alzheimer’s disease or other related dementias (Alzheimer’s Association, 2022). Providing care for persons with dementia can be a lonely and difficult journey. To individuals with limited English proficiency (LEP), the journey can be even more challenging due to unfamiliarity with the mainstream health care systems and limited access to dementia-related resources and services. Furthermore, those with LEP may not seek help proactively due to cultural stigma and misconceptions about dementia (Casado et al., 2018; Herrmann et al., 2018). However, little is known about dementia caregiving in the LEP population. Considering the gap, this study qualitatively explored caregiving experiences and burdens among Korean immigrants who provide informal care for their family/relative. The Stress Process Perspective was used as a guiding/conceptual framework (Pearlin et al., 1990).

Methods:

Using a variety of sampling strategies including referrals and advertisement on social media, 16 Korean American caregivers of their family/relatives with dementia were recruited in the Los Angeles area. In-depth interviews were conducted virtually in Korean and transcribed verbatim. Using a thematic approach, a team of three members was involved in coding the transcripts and derived categories of codes and themes. The fourth member reviewed all transcripts, codes, and themes and checked discrepancies and worked toward consensus coding. The process continued until a consensus emerged for codes, categories, and themes. Using Atlas.ti qualitative data software, data were coded, organized, and examined for patterns and relationships.

Results:

All participants (caregivers and care recipients) were born in Korea and spoke Korean as their primary language. On average, care recipients were 85 years old (ranging from 66 to 99). The mean age of caregivers was 55 years old (ranging from 30 to 82). The majority of caregivers were women (81%) and caregivers have provided care for about five years on average. Regarding relationship to care-recipient, nine of them provided care for their parent, four for parent-in-law, one for a spouse, one for a grandparent, and one for a relative. Guided by the stress process lens, the derived themes were categorized into five main domains (background/context, primary stressors, secondary role strains, secondary intrapsychic strain and outcome (caregiver burden), and one mediator domain (coping strategy and social support). The adverse effects of caregiving (caregiver burden) were manifested through emotional, financial, physical, and social burdens.

Conclusions and Implications:

Dementia caregiving can take a devastating emotional and physical toll on caregivers especially when they are not prepared and unsupported. The burden of caring for a family member with dementia may be understood in the sociocultural context involving layers of protective and risk factors. One of the groups that are hard-to-reach and less likely to be informed about dementia and its related services may be immigrants with LEP. When working with such groups, social workers should identify barriers including cultural stigma and unawareness of services/resources and help LEP caregivers access needed services/resources. Also, outreach for education and supportive services for caregivers requires further attention.

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