DEMENTIA In the Asian Diaspora
Every 3 seconds, someone in the world develops dementia.
In 2020, there were 55 million people living with dementia worldwide, with over 7 million of these in the U.S. The global number is expected to reach 78 million by 2030 and 139 million by 2050.
Several studies show that the prevalence of dementia varies based on ethnic groups. However, research is only beginning to explore the prevalence of dementia in the Asian diaspora.
A 2016 study[1] by Kaiser Permanente & University of California San Francisco showed that dementia risk for people over 65 was highest among African Americans, moderate among Latino, Pacific Islanders and Whites, and lowest among Asian Americans. However, the study was based on dementia diagnosis, and did not differentiate between different Asian American subgroups. They acknowledge that differences in education, and attitudes towards what is considered “normal aging” might have contributed to the lower rate of diagnosis in Asian Americans.
There is evidence[2] that Black persons with dementia were at higher risk of underdiagnosis than their white counterparts. There is no data on whether this is also true for the Asian population. However, 34% of Asian Americans seeking Alzheimer care report facing some discrimination, compared to 9% of white Americans, according to the Alzheimer’s Association[3].
A follow up study in 2018[4] explored the differences among several Asian American subgroups and found that Filipino Americans had the highest risk, followed by Japanese and Chinese. Not enough data was available for Vietnamese, Korean and South Asian subgroups. Still, overall, Asian Americans had a lower incidence rate than white Americans.
I think it is important for us to talk about it on the podcast because according to The Lancet, 40% of dementia cases could be prevented or delayed[5] through education and lifestyle changes. However, within the Asian diaspora, there is often lack of awareness that may be contributing to delayed diagnosis and treatment. In a 2017 study[6] Almost half of the Asian Americans sampled believed that Alzheimer/Dementia (AD) is a natural part of aging, but for Vietnamese Americans, make that 63%. Korean Americans were the most informed about AD, while Chinese were the least.
There is also the issue of stigma when it comes to considering nursing homes or home care. About 30% of the sampled Asian American women felt it was not right to move someone with AD into a nursing home. Filipino, Vietnamese, and Indian Americans were most resistant to the idea while Korean Americans had the least reservations against it (15.8%). As we’ll hear in our interview today, sometimes good intentions don’t translate into the best care possible.
References
- Mayeda, E. R., Glymour, M. M., Quesenberry, C. P., & Whitmer, R. A. (2016). Inequalities in dementia incidence between six racial and ethnic groups over 14 years. Alzheimer’s & dementia : the journal of the Alzheimer’s Association, 12(3), 216–224. https://doi.org/10.1016/j.jalz.2015.12.007
- Kan Z. Gianattasio, Christina Prather, M. Maria Glymour, Adam Ciarleglio, Melinda C. Power. (2019). Racial disparities and temporal trends in dementia misdiagnosis risk in the United States, Alzheimer’s & Dementia: Translational Research & Clinical Interventions, Volume 5, 2019, Pages 891-898, ISSN 2352-8737, https://doi.org/10.1016/j.trci.2019.11.008
- Alzheimer’s Association. (2022). Special Report: More than normal aging: Understanding mild cognitive impairment
https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf - Mayeda, E. R., Glymour, M. M., Quesenberry, C. P., Jr, & Whitmer, R. A. (2017). Heterogeneity in 14-year Dementia Incidence Between Asian American Subgroups. Alzheimer disease and associated disorders, 31(3), 181–186. https://doi.org/10.1097/WAD.0000000000000189
- The Lancet: 40% of dementia cases could be prevented or delayed by targeting 12 risk factors throughout life. https://www.alzheimers.org.uk/news/2020-07-30/lancet-40-dementia-cases-could-be-prevented-or-delayed-targeting-12-risk-factors
- Jang Y, Yoon H, Park NS, Rhee M-K, Chiriboga DA. Asian Americans’ concerns and plans about Alzheimer’s disease: The role of exposure, literacy and cultural beliefs. Health Soc Care Community. 2017;00:1–8. https://doi.org/10.1111/hsc.12509
EPISODE Summary
Today’s episode is an important one if you have any aging loved ones. Our guest today is passionate about providing care for dementia patients, as well as raising awareness of dementia & Alzheimer’s. We talk about the early signs, how to communicate and support loved ones with dementia, and how to decide whether professional care should be considered. Nicolas’ story is also an inspiring one, as he is living proof that failing high school is not the end all be all. A recent Masters graduate, he is now pursuing a PhD and is clearly very passionate about his chosen career path.
Before we get into our conversation with our guest, I want to share some statistics about dementia and put that in the context of the Asian diaspora. I will link all of this information in the show notes, so be sure to check nuancespod.com for this episode’s show notes for references.
GUEST BIO
Nicolas Kee Mew is a Sino-Mauritian-British award-winning care home manager based in London. He was recently awarded the British Citizen Award Medal at the Palace of Westminster and has won several national dementia awards. When he is not taking care care of patients, he is raising awareness or fundraising for dementia research..
DEFINITIONS
- Hakka: Chinese ethnic group, and language spoken by the group.
- A-levels: Standardized exams administered by Cambridge University (U.K.), similar to the Advanced Placement (AP) programs in the U.S.
TAKEAWAYS
- Your high school grades are not the end all be all.
- Asking people what support looks like to them instead of taking over and telling them what to do is likely a more productive strategy.
- Dementia is a fatal illness that still has no cure. But it can be prevented or delayed through lifestyle changes.
- Recognizing early signs of dementia and seeking diagnosis is key in order to start treatment as soon as possible.
- There are two types of professional care to consider. Home care, and care (nursing/retirement) homes.
Additional resources on Alzheimer’s & Dementia
Dementia in the Asian community: Prevalence, stigma, and more
10 Warning Signs of Alzheimer’s
Dementia Causes and Risk Factors | Everyday Health
Fact Sheet: U.S. Dementia Trends | PRB
Non-White Americans Have a Higher Risk of Dementia | Everyday Health
One in Three Cases of Alzheimer’s May be Lifestyle Related – Risk Factors
Alzheimer’s in Asian Populations: A Hidden Health Crisis? WebMD
Asian Americans and Dementia Risk, Not Homogenous
Black, Asian and minority ethnic communities and dementia research(UK)
Dementia statistics | Alzheimer’s Disease International (ADI)
U.S. burden of Alzheimer’s disease, related dementias to double by 2060 | CDC Online Newsroom
Survival after dementia diagnosis in five racial/ethnic groups
Association of Race and Ethnicity With Incidence of Dementia Among Older Adults
Fewer than 1 in 5 Americans (18%) are familiar with mild cognitive impairment (MCI).
Association of Race and Ethnicity With Incidence of Dementia Among Older Adults
Racial disparities and temporal trends in dementia misdiagnosis risk in the United States
People with dementia from ethnic minority backgrounds face extra barriers in accessing care.
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