Perceptions of Dementia and Culturally-Appropriate Services in Asian Communities in the U.S

Background: Cultural norms and stigma often prevent members of Asian immigrant communities from seeking help when dementia strikes. Delayed initiation of medical treatment or behavioral interventions can result in symptom exacerbation, premature or avoidable institutionalization, and significant burden to caregivers. This study examined dementia-related perceptions and facilitators/barriers in accessing care among first generation older Korean and Chinese immigrants who have limited English-language proficiency and their caregivers, a population that is underrepresented in previous research.

Methods: Twenty-four in-depth, semi-structured face-to-face interviews were conducted with older Korean and Chinese immigrants (80 to 90 years old) and their family caregivers. Participants were recruited from an urban home care agency specializing in the care of older Asian immigrants. To maximize diversity of experience related to dementia, the final sample included: 1) four families (two Korean and two Chinese) who had formal diagnoses of dementia; 2) four families (two Korean and two Chinese) with memory loss issues and other behavioral symptoms without formal diagnoses of dementia; and 3) four families (two Korean and two Chinese) with no memory loss issues. Interview questions were designed to elicit perceptions of dementia and facilitators and barriers in accessing care. Older participants and family caregivers were interviewed separately. All interviews were audio-taped, transcribed verbatim, and translated into English for analysis. A codebook was developed following the directed content analysis approach. NVivo11 was used to facilitate coding and analysis. All transcripts were independently coded by two members of the research team to assure coding accuracy.

Findings: Three major themes emerged for older immigrants and their family caregivers, including delayed help-seeking, barriers to care, and caregiver burden. The findings suggest that older Asian immigrants and their family members delay help-seeking until the behavioral symptoms become unmanageable. They perceived language, the futility of treatment, and lack of knowledge about available services as major barriers to seek care. Severe behavioral issues were commonly reported by both older immigrants and their family caregivers as the primary prompt to seek help. Most participants perceived family as the first line of support for the care of older persons with dementia. Family caregivers shared that they experience caregiving burden. Additionally, the participants identified needs for services for older Asian immigrants, including emotional support for family caregivers, education, and social/recreational programs.

Conclusion and Implications: Training and educational programs should be developed to raise awareness of dementia in the Asian community and enhance their motivation to seek professional help. Special attention should be given to symptom recognition to facilitate timely help-seeking in Asian communities. Additionally, social work interventions, such as stress management and counseling, could be developed to alleviate caregiver burden for family caregivers of older Asian immigrants with dementia. Furthermore, linguistically matched social services are imperative to address the emotional and social needs of the older Asian immigrants and their family caregivers.