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Connecting with Asian American and Pacific Islanders about Dementia

Monday, December 11, 2017   (0 Comments)
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An Action Guide for Service Providers



Nikki Eller, MPH, and Basia Belza, PhD, RN, FAAN, Healthy Brain Research Network, University of Washington


“In my family or maybe my culture we don't like to visit [the] doctor or tell anyone they are sick, especially aging parents. They are afraid [to] give us [an] extra burden if they tell they are sick” – Chinese female caregiver


Asian Americans and Pacific Islanders (AAPI) may be struggling more than you think with Alzheimer’s Disease and related dementias (ADRD). The scant research there is on AAPI and cognitive health suggests that diagnoses occur in the later stages of ADRD. [1] AAPI also face a higher burden of caregiving, as 42% of those surveyed by AARP were caring for an older adult, as opposed to 22% in the general population. [2]


Both the tendencies to remain undiagnosed until the manifestations of dementia are unavoidable, and to care for older adults at home may be related to the stigma many AAPI cultures attach to dementia. The Chinese lack a word for dementia, instead applying the term “crazy catatonic.” [3]. While the Japanese have a translation for Alzheimer’s Disease, they also have a term for senility that is used for those who are perceived to be culpable for losing their minds. [4]


To learn how to connect better with AAPI communities about dementia, we conducted focus groups with Chinese and Japanese Americans residing in King County, Washington to help identify the barriers adult children face to bringing their parents in for a cognitive evaluation. Based on the analysis of our findings we produced Connecting with AAPIs about Dementia: An Action Guide for Service Providers.  The Action Guide includes three recommendations to help service providers improve their care of adults from AAPI communities.


1.       Advocate for adequate resources to end Alzheimer’s Disease for all Americans, including AAPIs.

2.       Collect disaggregated race data to tailor education and long-term services and supports.

  • The City of Seattle has a list of suggested sub-categories that cover the largest ethnic groups in that area, and the 2010 Census offers 25 categories for Asian Americans, and also reports on the largest groups in cities around the country.

3.       Facilitate access to culturally and linguistically appropriate education and services. 

  • The Action Guide provides tips on improving messages targeted to AAPI about ADRD.

Our Action Guide also includes a resource list with websites in AAPI languages to help families learn more about dementia and find caregiving resources, as well as culturally appropriate screening tools and cultural competency training where providers can learn more.


Please let us know if you are interested in using the Action Guide at your clinic — we are happy to help get the conversation started and/or connect you to other resources. We also welcome feedback on the Action Guide. The Action Guide is available at:




This work was part of what we do as the CDC-funded Healthy Brain Research Network (HBRN), which was created in 2014 to promote cognitive health and address the needs of Americans living with cognitive impairment from a public health perspective. The HBRN includes 6 CDC Prevention Research Centers and two affiliate centers located at universities throughout the USA. The lead center is located at the University of Washington Health Promotion Research Center, which also offers evidence-based programs to improve older adult fitness and depression, workplace health, and cancer prevention and control. Please visit our website to learn more about our initiatives: http://depts.washington.edu/hprc/


Community agencies interested in using tested messages and images to promote an adult child taking a loved one for a screening/provider visit (with African American and white adults in urban populations) please contact our HBRN colleagues at the University of Pennsylvania Terrence Casey (terrence.casey@uphs.upenn.edu) and/or Kristin Harkins (kristin.harkins@uphs.upenn.edu).  


[1] Alzheimer’s Association (2009). Alzheimer’s Disease Facts and Figures in California: Current Status and Future Projections. http://www.alz.org/CAdata/FullReport2009.pdf [April 4, 2017]

[2] AARP (2014). Caregiving among Asian Americans and Pacific Islanders Age 50+. http://www.aarp.org/content/dam/aarp/home-and-family/caregiving/2014-11/caregiving_aapis_english.pdf

[3] Elliott, K. S., Minno, M. D., Lam, D., and Tu, A. M. (2014). Working with Chinese families in the

context of dementia In G. Yeo & D. G. Thompson, Ethnicity and Dementia (pp. 89-107). Taylor and


[4] Traphagan, J.W. (2006). Being a good rojin. In A. Leibing & L. Cohen, Thinking about Dementia: Culture, Loss, and the Anthropology of Senility. (pp. 269-287) Rutgers University.


NWRPCA welcomes and regularly publishes white papers and articles submitted by members, partners and associates with subject matter expertise. The appearance of any guest publication in our Health Center News database represents the views of the author and does not constitute endorsement by NWRPCA of the stated opinions or perspectives, nor does it suggest endorsement of the contributor's products or services.



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