Volunteering Program for Chinese Dementia Caregivers

Developing a Culturally-sensitive Volunteering Program to Reduce Stress of Dementia Caregivers in Chinese American Communities

Although many older Chinese Americans are expected to need intensive care because of cognitive impairment, a large gap exists in development of culturally sensitive interventions to reduce stress among caregivers in Chinese American communities. This research project will develop and pilot test a culturally sensitive intervention, the peer mentoring program (PMP), which is informed by the sociocultural stress and coping model. This project will generate preliminary data for a larger randomized controlled trial for efficacy or effectiveness testing of PMP, which is an innovative intervention to support dementia among Chinese Americans, by empowering the existing human resources of experiential caregivers in the same ethnic community.

Providing care for a family member with Alzheimer's disease and related dementia (ADRD) negatively affects caregivers' physical and mental health.Despite numerous studies on developing interventions for ADRD family caregivers of Caucasian Americans, it is not clear what interventions are effective in reducing the stress of family caregivers of Asian Americans. The purpose of this study is to develop a culturally sensitive and effective intervention to reduce the stress of dementia caregivers of Chinese Americans. It is necessary to prioritize Chinese American ADRD caregiving research because of: (a) the increasing needs of ADRD caregivers of Chinese Americans, the largest and fastest-growing ethnic group of Asians in the United States; (b) erroneous conclusions about Chinese American health in current research and policy practices due to omission, aggregation, and extrapolation; (c) health inequality issues ignored by the "model minority" stereotype of Asian Americans in general; (d) mental health vulnerabilities of older Chinese Americans; and (e) unresolved challenges of Chinese American caregivers such as lack of health literacy, concerns about stigma, failure to maintain family harmony, social isolation, and barriers to accessing culturally competent services. Given these concerns and the lack of health professionals who can speak Chinese and understand Chinese culture and norms, this study aims to develop a peer mentoring program to support dementia caregivers by empowering the human resources of experiential caregivers in Chinese American communities. Informed by the sociocultural stress and coping model and relevant empirical evidence, the investigators designed the Peer Mentoring Program (PMP) to train and monitor experiential caregivers in providing mentoring support for caregivers in the same ethnic community. Experiential caregivers in the same ethnic community could understand the caregiving journey embedded in Chinese cultural values and the international migration experience. In the PMP, experiential caregivers will be hired and trained as volunteer peer mentors and monitored in providing mentoring support to dementia caregivers to address cultural beliefs about dementia and family caregiving, develop culturally effective coping strategies, and enhance culturally appropriate social support. The intervention is promising given the needs of Chinese caregivers, positive results of a previous trial in a senior volunteer program in Chinese Americans communities, benefits of volunteering for older adults, preliminary analysis results of data from our pilot study (70% Chinese caregivers reported a desire to receive peer mentoring support), and the potential of developing a cost-effective and sustainable intervention that could be applied in other racial and ethnic minority communities. This proposed study will use a community-based participatory research (CBPR) approach based on a partnership of multidisciplinary researchers, health professionals, family caregivers and older volunteers in NYC to accomplish Stage 0 (Aim1) and Stage I (Aims 2 and 3) for behavioral intervention development and to develop Stage II and/or Stage IV (Aim 3). Aim 1: To study the challenges and enablers of successful caregiving for persons with ADRD in Chinese American communities in New York City (NYC). The investigators will analyze recently collected data from in-depth interviews and questionnaire-based surveys to identify robust challenges, barriers, resources, and successful coping strategies among these caregivers, which will help develop the PMP intervention manual. Aim 2: To develop the PMP intervention protocol. Using the analysis results from Aim 1 in collaboration with multidisciplinary researchers and professionals, I will develop the volunteer training manual, intervention protocol, and screening and evaluation tools. Aim 3: To examine the feasibility and acceptability of PMP. A pilot randomized clinical trial of five volunteers and 30 caregivers (15 to intervention, 15 to control) will be conducted. Qualitative and quantitative data from caregivers, volunteers, and professional collaborators will be collected to evaluate feasibility and acceptability of recruitment, randomization, intervention adherence, treatment fidelity, and administration of measures. Based on the results of feasibility and acceptability test, The investigators will refine the intervention and inform a subsequent larger randomized control trial (RCT) to initiate an efficacy or hybrid stage of intervention development.

The treatment group will receive intervention of a peer mentoring program plus usual services they could receive from community agencies.

The Peer Mentoring Program (PMP) is a 3-month intervention to provide one-on-one mentoring support via phone calls to reduce the stress of Chinese dementia caregivers. The PMP will address the following topics: cultural beliefs about dementia and family caregiving, culturally effective coping strategies, and culturally appropriate social support.

The outcome will be measured by Revised Memory and Behavior Problems Checklist (RMBC). RMBC is a 24-item scale measuring dementia caregiver's burden. Scores are computed for the presence or absence of each problem first, and then for caregiver "reaction" or the extent to which caregivers were "bothered" or "distressed" by each behavior. The caregivers' reaction to each behavior, or the extent of distress experienced, were scored as follows: Reactions are assessed by asking how "upsetting" the behavior was on a Likert scale of 0 to 4 (0 = Not at all, 1= a little, 2 = moderately, 3 = very much, and 4 =extremely). Frequency of behaviors are assessed based on a Likert-scale of 0 to 4 (0 = never occurs, 1 = occurs infrequently and not in the last week, 2 = occurred 1-2 times in the last week, 3 = occurred 3-6 times in the last week, and 4 = occurs daily or more often).

This outcome will be measured by Zarit's Burden Interview (ZBI). ZBI contains 22 items. Each item on the interview is a statement which the caregiver is asked to endorse using a 5-point scale. Response options range from 0 (Never) to 4 (Nearly Always). No clear cut-off points are defined in RMBC or ZBI. In general, higher score indicates higher levels of burden.

This outcome will be used by 10-item Center for Epidemiologic Studies Depression Scale. The score ranges from 0 to 30. Higher score indicates higher levels of depressive symptoms. 12 is usually considered as the cut-off point to indicate depression.

This outcome will be measured by Personal growth Index. A higher Personal Growth Index Score indicates a better outcome.

Inclusion Criteria: The caregivers will be recruited if they: self-identify as Chinese are 21 years old or older speak Mandarin or Cantonese Chinese provide care to a family member with dementia or cognitive impairment related to dementia for 10 hours or more a week are interested in receiving peer mentoring report moderate to severe caregiver burden can access a telephone and communicate via phone call. Inclusion Criteria: The volunteer mentors will be recruited if they: are 50 years old or older self-identify as Chinese speak Mandarin or Cantonese Chinese have experience providing care to a family member with dementia or cognitive impairment related to dementia can access a telephone and communicate via phone call can attend volunteering training in person agree to volunteer as a mentor with minimal financial compensation agree to the time commitment required by the program. Exclusion Criteria for both groups: do not self-identify as Chinese do not speak Mandarin or Cantonese Chinese