'It's a lonely journey': caregiving experiences and psychosocial distress among Chinese American dementia family caregivers.

OBJECTIVES: Chinese American family caregivers of persons with Alzheimer's disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies. METHODS: In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework. RESULTS: All participants reported high levels of caregiving stress associated with care-recipients' advanced symptoms and required assistance in activities in daily living. The relationship of caregiver and care-recipient was strained in their roles transition. The complex healthcare system, insurance policies, and a lack of linguistically appropriate services aggravated their psychosocial distress. Chinese cultural norms on 'family harmony' hindered their seeking of social support. Prolonged caregiving stress led to physical and mental impairment, including poor sleep, depression, and chronic conditions. Participants described their caregiving experience as 'a lonely journey' with a pervasive sense of hopelessness and withdrawal; their distress process was positively or negatively influenced by their coping strategies. All participants were eager for any kind of support; especially culturally appropriate programs that could improve their caregiving skills, self-care, and access to services. CONCLUSION: Our data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress, which was aggravated by the barriers to social support and health services due to their immigrant and minority status. Culturally appropriate targeted intervention is urgently needed for this underserved and vulnerable population.

A WeChat-based Intervention, Wellness Enhancement for Caregivers (WECARE), for Chinese American Dementia Caregivers: Pilot Assessment of Feasibility, Acceptability, and Preliminary Efficacy.

BACKGROUND: Chinese American family caregivers of persons with dementia experience high rates of psychosocial distress and adverse health outcomes. Due to their immigrant and minority status, they face substantial obstacles to care and support, including stigma and misperception of dementia, limited knowledge and use of welfare and services, and poor social support. Few interventions have been developed or tested for this vulnerable population. OBJECTIVE: This study aims to pilot-test the Wellness Enhancement for Caregivers (WECARE) intervention, a culturally tailored program delivered via WeChat, a social media app highly popular in the Chinese population. The 7-week WECARE was designed specifically for Chinese American dementia caregivers to improve their caregiving skills, reduce stress, and enhance psychosocial well-being. Feasibility, acceptability, and preliminary efficacy of the WECARE were assessed in this pilot. METHODS: A total of 24 Chinese American family caregivers of persons with dementia were recruited for a pre-post 1-arm trial of the WECARE. By subscribing to the WECARE official account, participants received interactive multimedia programs on their WeChat account multiple times a week for 7 weeks. A backend database automatically delivered program components and tracked user activities. Three online group meetings were organized to facilitate social networking. Participants completed a baseline and a follow-up survey. Feasibility was assessed by the follow-up rate and curriculum completion rate; acceptability was assessed by user satisfaction and perceived usefulness of the program; and efficacy was assessed with pre-post differences in 2 primary outcomes of depressive symptoms and caregiving burden. RESULTS: The intervention was completed by 23 participants with a retention rate of 96%. Most of them (n=20, 83%) were older than 50 years and the majority (n=17, 71%) were female. The backend database revealed that the mean curriculum completion rate was 67%. Participants also reported high rates of user satisfaction and perceived usefulness of the intervention and high ratings of weekly programs. The intervention led to significant improvement in participants' psychosocial health outcomes; their depressive symptoms reduced from 5.74 to 3.35 with an effect size of -0.89 and caregiving burden decreased from 25.78 to 21.96 with an effect size of -0.48. CONCLUSIONS: This pilot study suggests that WeChat-based WECARE intervention was feasible and acceptable; it also demonstrated initial efficacy in improving psychosocial well-being in Chinese American dementia caregivers. Further research with a control group is needed to assess its efficacy and effectiveness. The study highlights the need for more culturally appropriate mobile health interventions for Chinese American family caregivers of persons with dementia.

A Social Media-Based Intervention for Chinese American Caregivers of Persons With Dementia: Protocol Development.

BACKGROUND: Racial/ethnic minority and immigrant caregivers of persons with dementia experience high rates of psychosocial stress and adverse health outcomes. Few culturally tailored mobile health (mHealth) programs were designed for these vulnerable populations. OBJECTIVE: This study reports the development of a culturally tailored mHealth program called Wellness Enhancement for Caregivers (WECARE) to improve caregiving skills, reduce distress, and improve the psychosocial well-being of Chinese American family caregivers of persons with dementia. METHODS: Community-based user-centered design principles were applied in the program development. First, the structure and curriculum of the WECARE program were crafted based on existing evidence-based interventions for caregivers with input from 4 experts. Second, through working closely with 8 stakeholders, we culturally adapted evidence-based programs into multimedia program components. Lastly, 5 target users tested the initial WECARE program; their experience and feedback were used to further refine the program. RESULTS: The resulting WECARE is a 7-week mHealth program delivered via WeChat, a social media app highly popular in Chinese Americans. By subscribing to the official WECARE account, users can receive 6 interactive multimedia articles pushed to their WeChat accounts each week for 7 weeks. The 7 major themes include (1) facts of dementia and caregiving; (2) the enhancement of caregiving skills; (3) effective communication with health care providers, care partners, and family members; (4) problem-solving skills for caregiving stress management; (5) stress reduction and depression prevention; (6) the practice of self-care and health behaviors; and (7) social support and available resources. Users also have the option of joining group chats for peer support. The WECARE program also includes a back-end database that manages intervention delivery and tracks user engagement. CONCLUSIONS: The WECARE program represents one of the first culturally tailored social media-based interventions for Chinese American caregivers of persons with dementia. It demonstrates the use of community-based user-centered design principles in developing an mHealth intervention program in underserved communities. We call for more cultural adaptation and development of mHealth interventions for immigrant and racial/ethnic minority caregivers of persons with dementia.