Recruitment of Chinese American elders into dementia research: The UCSF ADRC experience

Asian Americans are one of the fastest growing population groups in the United States. Among Asian Americans, Chinese Americans are the largest group, representing 23% (http://www.census.gov/acs/www/). The life expectancy of Asian Americans living in the United States is in the mid 80s (http://www.census.gov/population/www/projections/index.html). Given that the incidence of dementia increases steadily with age (J. H. Chen, Lin, & Chen, 2009), we can expect an increasing need for geriatric dementia care in Chinese Americans. Although Asian Americans represent 4.37% of the total U.S. population, they are not well represented in clinical research, including studies of dementia (Hinton, Guo, Hillygus, & Levkoff, 2000; Hou, Yaffe, Perez-Stable, & Miller, 2006). The University of California, San Francisco (UCSF) Alzheimer’s Disease Research Center (ADRC) was established in 2004. As 1 of 30 ADRC’s currently funded by the National Institute on Aging (http://www.nia.nih.gov/Alzheimers/ResearchInformation/ResearchCenters/), the mission of the UCSF ADRC is to promote earlier and more accurate diagnosis of neurodegenerative dementias by enrolling older individuals with cognitive and behavioral changes into longitudinal clinical research. The annual research participation involves several hours of clinical assessment including a neurological exam, neuropsychological testing, and an interview with an informant at the university hospital. Participants are often asked to make a second visit for magnetic resonance imaging (MRI) scanning, and remuneration is low. Thus, there are many aspects of the research that might lessen the enthusiasm for participation. At the same time, a major goal of the UCSF ADRC and the ADRC program in general is to translate knowledge gleaned from research to underserved communities and promote participation of socioeconomically or otherwise disadvantaged groups in research. In San Francisco County, Chinese Americans constitute one fifth of the total population, making this one of the largest Chinese American communities in the United States (http://www.census.gov/acs/www/). Because of the prominence of Chinese Americans in the San Francisco Bay Area and in order to begin addressing the underrepresentation of Chinese Americans in dementia research, UCSF has developed a Chinese Outreach Program to promote participation of Chinese Americans in dementia research. The context in which our outreach program was undertaken was one where significant barriers prevent enrollment of Asian Americans into dementia research. It has been noted that members of the Asian American community may endorse beliefs that hamper research participation, including the belief that memory loss is normal for aging (and not a disease), that research participation can cause excessive worry and thus be harmful, and that Alzheimer’s disease (AD) carries a social stigma. Additionally, medical practitioners serving the Asian community do not always see research as beneficial to participants (Hinton et al., 2000). These issues are compounded by the fact that the largest portion of the Chinese American community in the Bay Area lives in Chinatown and is geographically separated from the facilities at UCSF, and many individuals in Chinatown are uncomfortable coming to the UCSF campus for medical care. Studies have indicated that the location of health services and transportation are significant barriers for minorities in accessing health care and that increasing the convenience of health care service and partnering with community organizations can improve interactions with minority communities (Flanagan & Hancock, 2010; Perry, Chien, Walker, Fisher, & Johnson, 2010). In addition, research in dementia is beginning to focus on the earliest symptoms of memory impairment that occur before the development of frank dementia. Patients with such symptoms are often diagnosed with mild cognitive impairment (MCI), and they are at increased risk of developing dementia (Petersen et al., 2001). It is possible that disease-modifying treatment of degenerative diseases will only be effective at this early stage (Roberson & Mucke, 2006). Thus, our goals were to enroll a cohort of patients spanning a range of cognitive impairment from none (normal elderly controls) through MCI to frank dementia. However, enrollment of MCI patients into research depends on them or their family recognizing that they are showing cognitive impairment and being concerned enough to bring them in before the deficits are having significant impact. The potential cultural stigma associated with a diagnosis of dementia (Hinton et al., 2000) may inhibit patients from complaining to their physicians about cognitive changes or may inhibit families from bringing up these issues for fear of insulting an older family member or a perceived head of the household. In support of this concern, prior studies have suggested that East Asian immigrants are less likely to seek mental health services and recommend them to others (Barry & Grilo, 2002), and a recent study indicated that Asian Americans were less likely than Caucasians to be referred to mental health research through traditional mental health pathways (Bistricky, Mackin, Chu, & Arean, 2010). In contrast, more advanced dementia is often associated with disruptive behavioral problems (J. C. Chen, Borson, & Scanlan, 2000), which often result in presentation to a physician for help with management. Thus, we surmised that we might have difficulty identifying patients with MCI but rather would have most of our referrals already be in a stage of dementia. In order to overcome some of the barriers to participation, we established outreach clinics in San Francisco’s Chinatown where local practitioners could refer patients for subspecialty evaluation of cognitive impairment. The outreach clinics take place in two institutions in the heart of Chinatown where community members frequently go for care. In addition, our group tried to engage with the Chinatown community by offering lectures targeted at Chinese American elders and participating in an annual health fair. The purpose of this article is to describe the efforts made to promote enrollment of Chinese Americans into research and learn more about the factors predicting enrollment into longitudinal studies of aging in this community by examining the demographics of the potential research participants encountered in these settings and exploring the characteristics of individuals who chose to enroll.