Chinese language versions of the National Alzheimer's Coordinating Center's Uniform Data Set version 4: a linguistic and cultural adaptation study

Project Summary Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) are one of the most common disorders in adults aged 65 or above. Older Chinese Americans have a high risk of inaccurate diagnosis or delayed diagnosis of AD/ADRD due to the absence of culturally and linguistically appropriate assessment batteries and normative data. The National Alzheimer’s Coordinating Center (NACC) developed a Mandarin version of the Uniform Data Set (UDS) test battery for evaluation of older Chinese Americans in AD/ADRD research. However, several important limitations have been observed for this specific battery. For example, the translations did not include Cantonese, which together with Mandarin, is the most commonly spoken language in the US after English and Spanish. It is important to note that Cantonese and Mandarin are significantly different from one another in both spoken and written forms. Secondly, the test items and instructions that comprise the overall battery were developed through verbatim translations, which are not always culturally and linguistically relevant to the diverse older Chinese American population. Furthermore, a lack of normative data creates barriers to accurate interpretation, diagnosis, and prognostication of AD/ADRD. The proposed study aims to develop minimally biased Mandarin and Cantonese versions of the NACC UDS test battery, guided by the pilot data collected for the Mandarin version of the current UDS battery (Aim 1). The team will also generate sociodemographic-adjusted normative data using 400 older Chinese Americans with normal cognition (Aim 2) at the Alzheimer’s Disease Research Centers (ADRCs) at Icahn School of Medicine at Mount Sinai (ISMMS; n=200) and the University of California, San Francisco (UCSF; n=200). Lastly, the team will examine if cognitive performance correlates with corresponding neuroanatomical regions identified via brain magnetic resonance imaging (MRI) (Aim 3). 300 participants will be required for the MRI sub-study; 100 participants will come from the 400 cognitively normal participants already enrolled in Aim 2 (from each site: n=50), while an additional 100 MCI and 100 AD/ADRD (from each site: n=50 MCI and n=50 AD/ADRD) will need to be recruited. Participants must be primarily Mandarin/Cantonese speaking and aged 65 or above. All enrollees will undergo a dementia evaluation at the ADRCs using the newly developed Chinese versions of the NACC UDS battery. The study PIs (Li & Tee) have been successful in recruiting and evaluating Chinese speaking older adults at their respective ADRCs, generating a combined sample of >600 participants. This cohort will provide a recruitment pipeline for the proposed study. The PIs also have established relationship with stakeholders in the older Chinese communities to assist with recruitment should it become a challenge. This novel project will provide linguistically and culturally appropriate assessment tools for future cross-geographic studies that include older Chinese Americans and add value to the NACC research database. The study results will also provide normative data for the detection and diagnosis of cognitive deficits in this underserved population, which is currently nonexistent.