What to Do if Your Loved One's Nursing Home Has a COVID-19 Case

Jennifer Schrack, an associate professor at the Johns Hopkins School of Public Health who specializes in the epidemiology of aging, recommends focusing on staff testing in particular, because “they are one of the key ways that COVID-19 will enter a facility now.” Although the CMS recommends retesting staff on a weekly basis, Schrack says, “if the supplies are available, it's not unreasonable to think that staff should be tested every day; they are the ones who come and go on a daily basis, so even if they test negative one day, they may be positive the next.”

Is the facility being transparent?

While confirmation of a COVID-19 case in a facility can be frightening, receiving this information can actually be a positive sign. “It means there's transparency,” says Sweeney, “which is key; families can't possibly make the right decisions for their loved one if they are dealing with incomplete information.”

Although the CMS has ordered nursing homes to alert its residents and their families or representative of a COVID-19 case within 12 hours of confirmation, some facilities are missing that deadline. And state-regulated assisted living facilities and other long-term care units may not be under the same requirements as nursing homes.

A lack of communication is a warning signal, says Dwayne J. Clark, founder and CEO of Aegis Living, which operates 32 assisted living and memory care units across Washington, California and Nevada. Aegis has experienced 38 positive cases, more than half of which occurred in an early outbreak, in March, at a facility in Washington.

“We have to own both the good and bad news,” he says, noting that Aegis Living facilities aim to communicate new positive cases with residents and their loved ones within 24 hours. “That's the only way to establish trust and comfort among the community.”

If you are struggling to get in touch with a facility, AARP's Ryan suggests reaching out to your state's long-term care ombudsman, who can help you connect with or investigate the facility's protocols.

If there's been a positive case, how has the facility responded?

If a case is confirmed, certain measures must be taken to prevent an outbreak.

The CDC guidance focuses on “cohorting” residents, which involves establishing a designated and separate COVID-19 care unit for residents with the virus. Ideally, the care unit should be as separate as possible from the COVID-free section of the facility. The guidance advises “a separate floor, wing, or cluster of rooms.” Dedicated staff should be assigned to work only on the COVID-19 care unit and should remain separated from other residents and staff.

Johns Hopkins’ Schrack says that a facility should go beyond cohorting to try and separate positive residents from other positive residents where possible. “They should be isolated, even from each other,” she says. “Even though we might think putting positive cases together is good practice, we don't know enough about this virus yet to know if that's okay.”

The federal guidance also offers personal protective equipment (PPE) recommendations for staff, such as wearing eye protection and an N95 or higher-level respirator in the COVID-19 unit at all times, as well as heightened testing and tracing protocols. The recommendations also cover new resident admissions or readmissions to facilities, which can introduce coronavirus.

While the federal guidance is comprehensive, resident advocates warn that, at this stage, it is just guidance — not official requirements. “It's what [the CMS] would like to see, not what they must see,” says Pennsylvania's Barajas. In turn, it's not being adopted consistently. “The CDC guidance and CMS reports may look tidy, but I would caution against any idea that all coronavirus responses are actually occurring this way,” says Ryan.

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Federal government data show that nursing homes with only one star in the government's five-star rating system are more likely to have large numbers of cases during the pandemic. “Not everyone's equal,” adds Aegis Living's Clark, who says “a provider's history is going to predict their future."

To investigate a facility's track record, visit the government's Nursing Home Compare website, which includes information on infection-control violations for all the Medicare- and Medicaid-certified nursing homes in the country. It also features some survey data taken during the pandemic. The CMS's new COVID-19 website, which allows you to track coronavirus cases and deaths in specific nursing homes, may also be helpful, but it's updated only weekly. You may find more up-to-date information through your state. Clark says that Yelp and Glassdoor reviews are also a good resource.

"Do whatever you can to learn as quickly as possible what the facility has done to respond to a positive result,” says Barajas, who suggests contacting the facility directly, first and foremost.

"Asking them what their plan is and how they're implementing that is a really critical step,” says Lori Smetanka, executive director of the Consumer Voice, a nonprofit that advocates for the public on long-term care issues. This involves many questions, on PPE, testing, cohorting and other areas, she says, which aim to answer the overarching question: What are you doing to protect the residents and staff?

Should I remove my loved one?

It's a tough question and “there's no definitive answers,” Schrack says, “It really depends on whether you can provide better care and a safer environment at home, and if you can, for how long?”

Many factors should enter into the decision, says Smetanka: “Does the resident want to leave? What are their rights for coming back to the facility? Is your home adequately equipped for the care they need? Do they need medical care and how will they receive that? Who is coming into the house, potentially exposing them to the virus?"

"These challenges are not things that can't be overcome,” she continues, “but people really need to be aware that it's often not just as simple as just bringing the person home.”

In short, think it through. And “understand that COVID-19 is going to be a part of our new normal for a while,” Barajas says. “The presence of it in a facility is not a death sentence,” she adds, “but the failure of a facility to act against it quickly and consistently may be."