Overlooked and Undercounted: The Growing Impact of COVID-19 on Assisted Living Facilities

Since the COVID-19 pandemic first surfaced in the United States, the number of cases and deaths in long-term care (LTC) facilities has been rising. As of August 20, 2020, over 70,000 COVID-19 related resident and staff deaths have been reported in nursing homes and other long-term care facilities, which is a conservative estimate because not all states publish these data. The increase in deaths among long-term care facility residents and staff has become an urgent concern for federal and state policymakers, the long-term care industry, family members of residents, residents themselves, and the general public.

While COVID-19 outbreaks and deaths in nursing homes have received a fair amount of attention, assisted living facilities (ALFs), which are home to over 800,000 mostly frail, elderly residents, have been largely overlooked. Unlike nursing homes, assisted living facilities are not federally regulated, leaving states to decide whether or not to publicly report data or to impose restrictions to protect residents. This analysis examines the impact of COVID-19 on assisted living facilities as well as changes over time, using state-level data on COVID-19 cases and deaths reported in early June 2020, and again in early August. These counts are a subset of the state-level COVID-19 cases and deaths in all long-term care facilities, including nursing homes, as reported in other KFF analyses. (See Methods for details).

Less Than Half of All States Report COVID-19 Cases in Assisted Living Facilities and Even Fewer Report Deaths

As of August 2020, 19 states identify COVID-19 cases or deaths specific to assisted living facilities, an increase of four states since June 2020. Of these 19 states, 13 [CO, CT, FL, KY, MA, NV, ND, OH, PA, RI, TN, TX, UT] report COVID-19 data for assisted living facilities in its own, distinct category, and 6 [CA, GA, LA, NC, NY, SC] report COVID-19 data for assisted living facilities along with congregate settings other than nursing homes (Tables 1 and 2). This leaves 31 states and DC that do not identify COVID-19 cases and deaths occurring in assisted living facilities specifically, as of August 2020.

• 18 of the 19 states report COVID-19 cases in assisted living facilities: As of August 2020, 18 states report COVID-19 cases in assisted living facilities, either in its own distinct category (13 states) or combined with other congregate, non-nursing facilities (5 states), and report either cumulatively (13 states) or active cases only (5 states). Of these 18 states, 14 report cases among residents and staff separately, 2 report cases among residents and staff combined, and 2 report cases among residents only.
• 14 of the 19 states report COVID-19 deaths in assisted living facilities: As of August 2020, 14 states report COVID-19 deaths in assisted living facilities, either in its own distinct category (8 states) or combined with other congregate settings other than nursing homes (6 states), and report either cumulatively (12 states) or only among facilities with ongoing outbreaks (2 states). Of these 14 states, 7 report deaths among residents and staff separately, and 7 states report deaths among residents only

COVID-19 Cases and Deaths in Assisted Living Facilities Have Increased, With a Notable Increase in Cases Among Staff

CASES: As of early August 2020, a total of 22,080 COVID-19 cases have been reported among residents and staff in assisted living facilities, based on the 18 states reporting COVID-19 cases data. This total reflects both the number of cases among 14 states that were reporting this information in June and the addition of 4 states that started reporting since then. Among the 14 states that reported COVID-19 cases in both June and August, the number of cases among residents and staff has increased by 66% and the number of cases among residents only has increased by 63%. This is an undercount because it is based on data reported by a minority of states.

As of early August 2020, a total of 7,626 cases were reported among assisted living staff in the 14 states reporting staff cases, including 6 states that started reporting since June. Among the 8 states that reported in both June and August, the number of staff cases has increased by 156% from 2,085 to 5,333 cases in early August.

DEATHS: As of early August 2020, a total of 2,651 deaths among residents and staff have been reported in the 14 states that identify COVID-19 deaths specific to assisted living facilities, including the 10 states that reported deaths in both June and August, and 4 states that started reporting since June. Among the 10 states that reported deaths in both June and August, the total number of deaths increased by 59% from 1,483 to 2,356 deaths in early August. The majority of reported COVID-19 deaths are among assisted living facility residents (2,257); a relatively small number represent deaths among staff (99).

As of early August 2020, a total of 99 deaths were reported among assisted living staff in the 7 states reporting staff deaths, including 2 states that started reporting since June. Among the 5 states that reported in both June and August, the number of deaths has increased by 219% from 31 to 99 deaths in early August.

In the 10 states reporting cumulative COVID-19 CASE numbers for assisted living facilities in both June and August, the percentage increase in the aggregate number of COVID-19 cases in the population overall was significantly greater than the percentage increase in aggregate resident and staff cases in ALFs (223% versus 61%). But the opposite is true in the states reporting cumulative deaths in assisted living facilities. In the nine states reporting cumulative DEATH data for assisted living facilities separately from nursing homes, the aggregate percentage increase in COVID-19 deaths occurring in the overall population in these states was roughly half of the increase in resident and staff deaths occurring in ALFs between June and August (36% vs. 60%).

Discussion

Despite intense scrutiny of the number of COVID-19 cases and deaths in nursing facility settings, less than half of all states are reporting data for COVID-19 in assisted living facilities specifically. As a result, it is difficult to know the extent to which residents and staff in assisted living facilities have been affected by COVID-19 or the extent to which interventions are urgently needed. Our analysis finds a significant increase in COVID-19 cases and deaths among residents and staff in assisted living facilities in the two-month period between June and August. The rise in cases among staff is especially noteworthy. Notably, four out of five states [CA, FL, NV, SC] with the largest increase in cases among staff are also considered “hotspot” states with widespread community transmission. The rise in COVID-19 cases among staff is most likely to disproportionately affect female, Black, and low-wage workers, based on a recent analysis.

Since COVID-19 data for assisted living facilities are reported separately from nursing facilities by a minority of states, the counts of cases and deaths presented in this analysis are undoubtedly conservative. Compounding this data limitation, states that do report for assisted living facilities separately from nursing homes vary significantly in what they report: some states report cases, but not deaths, and some do not report cases or deaths among staff. In fact, only seven states separately report deaths among staff working in assisted living facilities. Additionally, while some states (e.g., NY, LA) have been reporting cumulative case and death data dating back to early March, others do not specify the start date of their retrospective data reporting, leading to potential undercounts of cases and deaths that have occurred since the beginning of the pandemic. The reporting of active cases only by some states (such as Florida) is likely to result in an undercount of the true magnitude of cases and deaths since the numbers do not take into account cases and deaths that may have occurred but are no longer active.

Overall, the incomplete system of state-level reporting of COVID-19 data in assisted living facilities results in an incomplete picture of disease incidence and mortality among staff and residents in these facilities. Based on data from the states that do report, outbreaks in assisted living facilities, and protections for residents and staff, warrant more careful attention.

Table 1:

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To collect data on COVID-19 cases and deaths in ALFs, we reviewed public reporting of COVID-19 surveillance data displayed on applicable state-run websites in all states, and collected numbers of cases and deaths for ALFs in states where this data is reported separately from cases and deaths in LTC facilities generally, in order to exclude nursing facilities from our analysis. Not all states report COVID-19 data for LTC facilities, and some only report this data for nursing homes. For this analysis, we collected state data on COVID-19 cases and deaths between June 5 and June 8, 2020, and between August 3 and August 6, 2020.

We included COVID-19 case and death data for each state (n=13) that reported for ALFs specifically, as well as other states (n=6) that report ALF data separately from nursing facilities, but do so within a larger category that includes ALFs along with other non-nursing home facility types, such as residential care facilities, personal care homes, and adult care facilities. We included these congregate facilities because assisted living facilities represent a large share of their total residents in many states. We intentionally excluded states reporting in broader categories that include nursing homes because these numbers are reported to CMS separately and our goal is to understand the impact of COVID-19 in assisted living facilities to the extent this is possible with current data limitations.

In order to compare increases in COVID-19 cases and deaths overall to increases in cases and deaths occurring in ALFs over the study period, we calculated the percent increases in cases and deaths occurring between June 8 and August 6, 2020 in the 11 states reporting cumulative ALF data in both the beginning and end of the study period, using the state data section of the KFF COVID-19 Coronavirus Tracker.

Notably, states vary widely in reporting data for cases and deaths. Among the 18 states that report ALF cases, 2 states report aggregate cases for residents and staff, 14 states report cases for residents and staff separately, and 2 states report cases for residents only. Among the 14 states that report ALF deaths, 7 states report deaths for residents and staff separately and 7 states report deaths for residents only. Since June, Connecticut and Texas, which were previously reporting cases and deaths for residents only, are now reporting staff cases, but not staff deaths (Texas) and cases and deaths for residents and staff separately (Connecticut). Most states in our analysis (n=14) report cumulative case and death data, however five states (Florida, North Carolina, North Dakota, Tennessee, Utah) report only active cases, which may lead to a significant undercount of cases and deaths that are no longer active. Within the two-month period, North Carolina switched from reporting cumulative cases to active cases.

States differ slightly in how many cases constitute a facility “outbreak” which triggers reporting – some states report data for facilities with just one active case, others begin reporting when two or more cases are reported by facilities. States also differ in whether they report suspected COVID-19 cases and deaths, in addition to confirmed cases – some only report cases confirmed via diagnostic test. For the purpose of this analysis, we have included both suspected and confirmed COVID-19 cases and deaths reported. Additionally, four states (Massachusetts, Rhode Island, Utah, and California) report ranges of cases and/or deaths, versus specific counts. For these states, we used the median of the reported range, or 5 in the case of “5 or above” reported, and 31 for “greater than 30”.