illustration of Lois Bowers

More than 201,000 residents and staff members of long-term care facilities had died from COVID-19 as of Jan. 31, accounting for at least 23% of all COVID-related deaths in the United States up to that point, according to a Kaiser Family Foundation report published Thursday.

The tally is based on federal and state data on assisted living communities, nursing homes and group homes, although author Priya Chidambaram noted that because the federal government only requires data on COVID-19 cases and deaths from Medicare and Medicaid-certified nursing facilities, the number “is likely an undercount … since it excludes deaths in long-term care settings other than nursing homes after June 30.”

“The data gap for all settings across the care continuum makes it difficult to assess the full impact of the pandemic on seniors and people with disabilities residing outside of nursing homes,” wrote Chidambaram, a senior policy analyst.

She maintains that “COVID-19 data that includes settings across the care continuum is essential to comprehensively assess the impact of COVID-19 on seniors and people with disabilities.” After all, Chidambaram said, U.S. assisted living communities are home to almost 1 million people.

Data-gathering challenges

Will there ever be a more precise count? Gathering data from settings outside of nursing homes is challenging, said the representatives of national long-term care associations with whom I spoke.

“More data might well be helpful to understand both the current impact of COVID-19 on older adults and care workers, as well as possibly mitigating the impact of a future public health crisis. However, we do not have a system to track reporting in assisted living and other non-nursing home congregate settings,” Robyn Stone, DrPH, LeadingAge’s senior vice president of research and co-director of the LeadingAge LTSS Center @UMass, Boston, told me.

As she pointed out, assisted living primarily is regulated at the state level, and regulations differ from state to state. “Similarly, states’ public health infrastructures — and data collection policies and processes — also vary,” Stone said.

Because assisted living is regulated at the state level, that’s where the data collection should take place, a representative from the American Health Care Association/National Center for Assisted Living told me.

“We support long-term care facilities publicly reporting vaccination rates as well as other critical COVID-19 data; however, as assisted living providers are regulated at the state level, they should report this data to their state government,” the spokesperson said. “It’s important to streamline existing systems rather than creating new ones, especially during an emergency such as a pandemic. Extensive and duplicative reporting requirements take precious time and resources away from resident care.”

AHCA/NCAL, the spokesperson said, encourages “local, state and federal governments to work together to improve our nation’s public health reporting systems rather than putting additional burden on providers. We also encourage government agencies to use the data collected as intended to strengthen the public health response to the pandemic.”

Argentum has been calling for transparency in COVID reporting among states since early in the pandemic.

In May 2020, the association “call[ed] upon each state to publicly and promptly report the COVID-19 data that their regulatory agencies are required to collect,” including COVID cases and fatalities as well as recoveries, “and the distinction of data reported by setting such as assisted living communities and nursing homes.”

Argentum President and CEO James Balda said at the time, however, that the association was “seeing discrepancies in how and which states across the country are publicly reporting data, and we are asking the states to offer full transparency. Not only is it important to maintaining trust and integrity; it’s also the right thing to do.”

A year later, a study by NORC at the University of Chicago calculated the average adjusted death rate from COVID-10 in assisted living at 19.3 per 1,000 residents, with 64% of assisted living facilities reporting no deaths from COVID-19. The NORC study, which also looked at other areas of senior living, and skilled nursing, was funded by the National Investment Center for Seniors Housing & Care and co-sponsored by the John A. Hartford Foundation, two private organizations.

The study undoubtedly has contributed to, or reinforced, positive perceptions of the industry during these unprecedented-in-our-lifetimes times. And it certainly has been something providers could point to, to reassure prospective residents and their families, as well as the general public. But is relying on private surveys, which the average person may not see, the only way these data can be known?

Beyond marketing

Their usefulness goes beyond marketing purposes.

As AHCA/NCAL told me, “Data can help identify critical areas that are most in need of aid and resources.”

Even if assisted living data aren’t collected at the federal level, there is something at the national level — investment in long-term services and supports — that could help assisted living and the rest of the long-term care continuum, LeadingAge’s Stone said.

“The COVID-19 public health crisis has raised awareness of our healthcare infrastructure’s many weaknesses, and specifically some that impact older Americans and their families,” Stone said. “Not only has our country chronically underinvested in long-term services and supports, but we have also neglected state and local public health programs and failed to create and support a coordinated public health system.”

Such a system, in addition to providing a more complete picture of COVID cases and deaths in long-term care, also could have provided a chance to identify COVID hotspots earlier, “with the possibility of mitigating the virus’ spread and serious negative health outcomes,” she said.

The issue is part of a broader story of public health systems typically not paying as much attention to the older adult population as they do to other groups, Stone and colleagues wrote last year in the Milbank Quarterly.

“In the wake of COVID-19, this lack of attention coincided with a lack of adequate resources like personal protective equipment (PPE), testing and contact tracing to target LTSS facilities and to help contain and mitigate the spread of infection early on in the pandemic,” they said.

Indeed, AHCA/NCAL said, even when data help identify where aid and resources are needed, “too often, no aid or resources have ever come.”

In the future, Stone and her co-authors said, “our country must increase coordination between public health departments and long-term services and supports agencies and providers and fund initiatives to enhance collaboration and communication across health, LTSS and public health systems.”

For senior living companies, workers and residents who need resources to combat the risks they face every day, and for everyone who seeks a clearer picture of the effects of the pandemic, that coordination can’t come soon enough.

Lois A. Bowers is the editor of McKnight’s Senior Living.