Dementia Kills Far More Than Previously Thought

The researcher’s findings published in the journal JAMA Neurology estimate that 13.6% of deaths are attributed to dementia, this is 2.7 times more than the 5% of death certificates stating dementia as an underlying cause. This underestimation was found to vary by race, with 7.1 times more black older adults, 4.1 times more Hispanic older adults, and 2.3 times more white older adults dying from dementia than the official records indicate. Additionally, it was more underreported more for men than women, and for those without high school education. 

“Understanding what people die of is essential for priority setting and resource allocation,” says study lead author Dr. Andrew Stokes, assistant professor of global health at BUSPH. “In the case of dementia, there are numerous challenges to obtaining accurate death counts, including stigma and lack of routine testing for dementia in primary care,” he says. “Our results indicate that the mortality burden of dementia may be greater than recognized, highlighting the importance of expanding dementia prevention and care.”

“In addition to underestimating dementia deaths, official tallies also appear to underestimate racial and ethnic disparities associated with dementia mortality. Our estimates indicate an urgent need to realign resources to address the disproportionate burden of dementia in Black and Hispanic communities,” Stokes says.

Data was used from a nationally representative cohort of 7,432 older adults who were enrolled in the Health and Retirement Study who enrolled in 2000 and were followed until 2009, analyzing the association between dementia and death as well as adjusting for other variables such as sex, age, education, medical diagnoses, location, and race/ethnicity. 

“These findings indicate that dementia represents a much more important factor in U.S. mortality than previously indicated by routine death records,” says study senior author Dr. Eileen Crimmins, professor and AARP Chair in Gerontology at the University of Southern California Leonard Davis School of Gerontology and a co-investigator on the Health and Retirement Study.