BOSTON — Dementia is a debilitating condition characterized by loss of cognitive functioning and memory. It isn’t usually considered a “fatal disease” all on its own, however. Now, that distinction may have to change. A new study from Boston University finds that dementia may be the underlying cause of close to three times more U.S. deaths than shown in official records and medical documents.
More specifically, researchers estimate that dementia is to blame for 13.6% of deaths. That’s a whole lot more than the 5% of death certificates listing the ailment as an underlying cause of death.
“Understanding what people die of is essential for priority setting and resource allocation,” says lead study author Dr. Andrew Stokes, assistant professor of global health at BUSPH, in a release. “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. Our results indicate that the mortality burden of dementia may be greater than recognized, highlighting the importance of expanding dementia prevention and care.”
Dementia-related death rates by ethnicity
The study shows that dementia-related deaths among African Americans and Hispanics go unrecorded more often than Caucasian deaths. They estimate that 7.1 times more older Black adults, 4.1 times more Hispanic older adults, and 2.3 times more older Caucasian adults have passed away due to the condition than officially reported.
Additionally, dementia deaths are more commonly underreported for men than women. That’s also the case among individuals without a high school education.
“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,” Dr. Stokes adds.
These findings were made possible by a nationally-representative dataset of 7,342 of older adults living in nursing homes. Researchers focused on individuals who entered a retirement facility in 2000, and checked in on each person nine years later. If an individual had passed away, researchers investigated the association between death and dementia after accounting for other important factors (other medical diagnoses, age, gender, region of the United States, education level, 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,” concludes senior author Dr. Eileen Crimmins, professor and AARP Chair in Gerontology at the University of Southern California.
The study is published in JAMA Neurology.