Dementia underlying cause in 3 times more deaths in U.S. than currently reported, study concludes

Dementia may be responsible for almost three times more deaths in the United States than what is being reported, according to a new study out of Boston University School of Public Health (BUSPH).

"Our results indicate that the mortality burden of dementia may be greater than recognized, highlighting the importance of expanding dementia prevention and care," Dr. Andrew Stokes, the lead author of the study published in JAMA Neurology, said in a news release.

The study estimated that 13.6 percent of deaths in the U.S. are attributed to dementia, some 2.7 times more than the 5 percent of death certificates that stated the underlying cause of death was dementia.

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"Understanding what people die of is essential for priority setting and resource allocation,” Stokes said in a news release.

For the study, the researchers analyzed information from the Health and Retirement Study (HRS), which gathers data from individuals starting when they move into nursing homes. The researchers looked at data collected from a nationally representative cohort of 7,342 elderly adults from 2000 to 2009. They analyzed the correlation between death and dementia while adjusting for other variables including sex, age, race/ethnicity, medical diagnosis, education level, and region of the U.S, according to the news release.

"These findings indicate that dementia represents a much more important factor in U.S. mortality than previously indicated by routine death records," senior author of the study 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, stated in the release.

The findings included that dementia-related deaths were underreported more for men than women, and the underestimated number of dementia-related deaths varied significantly by race.

Dementia was underestimated 7 times more in Black older adults, 4 times more in Hispanics, and 2.3 times more in White older adults dying from dementia than government records showed, according to the news release. Dementia-related deaths were also underreported more in individuals without a high school education, they found.

“Previous research has shown that dementia is disproportionately common among older adults who are Black, male, and/or have less education," the authors reported in the news release.

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"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, also an assistant professor of global health at BUSPH, said in the release.

The authors noted that it is challenging to obtain accurate records related to death counts in cases of dementia, with Stokes in the press release citing “stigma and lack of routine testing for dementia in primary care," as two of the reasons.

“The findings of this study suggest that dementia may represent a more important factor in U.S. mortality than indicated by routine mortality statistics, highlighting the need to expand population-based interventions focused on dementia prevention and care," the study author added.