Dementia may be the underlying cause of nearly three times more deaths than official U.S. records show.
Published this week in the journal JAMA Neurology, a new study from researchers at Boston University School of Public Health estimates that 13.6% of deaths are attributable to dementia compared to the 5 percent of death certificates that list dementia as the underlying cause of death.
According to lead author Dr. Andrew Stokes, assistant professor of global health at BUSPH, understanding people’s cause of death is essential to setting priorities and allocating resources in healthcare.
“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,” Stokes said in a news release. “Our results indicate that the mortality burden of dementia may be greater than recognized, highlighting the importance of expanding dementia prevention and care.”
The researchers used data from a nationally-representative cohort of 7,342 older adults in the Health and Retirement Study (HRS), which draws its data from individuals when they move into nursing homes. They specifically focused on data from older adults who entered the cohort in the year 2000, following those adults until 2009 and analyzing the association between dementia and death when adjusting for other variables including age, sex, race or ethnicity, education level, geographic region and medical diagnoses.
Stokes’ team found that race was the largest variable in the mis-listing of cause of death for older adults: More than seven times more Black adults — who are more susceptible to Alzheimer’s and related to dementias than white adults — and more than four times more Hispanic adults died from dementia than health records indicated, while 2.3 times more white adults did.
Gender and education level were also factors: Dementia-related deaths were underreported more often for men than for women. More often, individuals without a high school education had their deaths mis-reported as not dementia.
“In addition to underestimating dementia deaths, official tallies also appear to underestimate racial and ethnic disparities associated with dementia mortality,” Stokes said. “Our estimates indicate an urgent need to realign resources to address the disproportionate burden of dementia in Black and Hispanic communities.”