sick elderly person, death with dignity

The first national study of COVID-19-related mortality in U.S. assisted living communities shows a “crucial need” for specific attention to such residences in pandemic and other emergency responses.

That’s according to a research published in JAMA Network Open from Brown University and the University of North Carolina, which showed that deaths in assisted living communities were significantly higher in 2020 than in 2019. Assisted living residents experienced 17% higher overall mortality in 2020 compared with 2019 and 24% higher mortality in the 10 states with the highest COVID-19 community spread from January to August 2020 compared with the other 40 states, the data showed.

The study, according to the authors, shows that assisted living residents experienced increased mortality during the pandemic consistent with deaths among nursing home residents. Those increases likely were an underestimate given the lack of data for assisted living due to wide variances in tracking and regulation among states, they said.

This finding also underscores the importance of understanding the “unique challenges” assisted living communities face, according to the authors. Kali Thomas, Ph.D., an associate professor in Brown’s School of Public Health, co-authored a STAT News opinion piece in March 2020 explaining some of these unique risks and calling on providers and policymakers to take steps to reduce the virus’ effects.

“The data from our new study suggests that a lot of our concerns were valid and even likely contributed to these excess mortality rates,” Thomas said in a statement. “When responding to a pandemic, assisted living communities need their own preparedness plans. The guidance that’s provided for nursing homes needs to be tailored specifically to this population.”

The fact that assisted living is built on a social model of care rather than a medical model, and the fact that residents are more independent than nursing home residents, can increase the risk of viral transmission as residents welcome visitors as well as schedule and access medical care on their own, the authors said. Access to personal protective equipment also is not typically as common in assisted living as it is in nursing homes, they pointed out.

Also, although nursing homes follow federally regulated infection prevention and control guidelines and are surveyed for adherence to them, state regulations for assisted living communities vary widely in level of detail, requirements and support, Thomas said. The predominantly private-pay structure of assisted living also makes it difficult to track mortality rates, she added.

Using data from the Centers for Medicare & Medicaid Services from 2018 to 2020, researchers examined the effects of COVID-19 on assisted living communities in 49 states and the District of Columbia. The research was funded by a supplement to an existing National Institute on Aging grant that tracked how COVID-19 affected individuals living with dementia. 

Read more about this study in the McKnight’s Clinical Daily e-newsletter.