A Pandemic of Loneliness Swept Nursing Homes During COVID-19. Could It Happen Again?

During the early months of the COVID-19 pandemic, there was uncertainty about how best to protect nursing home residents and staff. Initially, the Centers for Medicare & Medicaid Services(CMS) allowed only limited visitation, known as compassionate care visits, for residents who were declining or near death.

As a result, many caregivers were unable to visit loved ones in nursing homes as the coronavirus spread. By April 2020, confirmed COVID-19 infections worldwide increased more than tenfold, exceeding 1 million cases, according to the Centers for Disease Control and Prevention (CDC).

Nursing homes and assisted living facilities nationwide initiated lockdowns to quell the spread and protect vulnerable patients and frontline health care workers.

Even after CMS later eased restrictions, many facilities continued to deny safe visitation.

In response, AARP state offices and national advocates pressed states and providers to comply with updated federal guidelines allowing safe in-person visitation. Despite these efforts, some states and individual facilities continued to restrict visits.

As time went on, a twin pandemic of loneliness swept nursing homes, as residents spent prolonged periods without visits from loved ones and opportunities for socialization or outings.

The result, family members and advocates say, was a rapid decline emotionally and cognitively for older adults who spent months separated from their support networks.

Essential Caregivers Act protects residents, families and staff

The legislation protects residents’ rights by allowing caregivers to visit during public health emergencies or other visitation restrictions, while guaranteeing access for end‑of‑life and compassionate care — a rule families say was applied unevenly from facility to facility.

The bill doesn’t simply open the door to everyone; it requires visitors to follow the same safety rules that apply to staff, like wearing personal protective equipment (PPE) or undergoing health screenings prior to entry, for example. Visitors can be denied entry if they don’t comply.

During a future pandemic, if the federal government were to limit nursing home visitation, a resident or their representative could name a designated caregiver under the Essential Caregivers Act.

Facilities would still be able to pause outside access completely to residents for short periods — up to 14 days with state approval — but designated caregivers would otherwise be able to visit freely.

The legislation also helps ease the burden on staff, since family members often supplement care, says Sam Brooks, director of public policy for the National Consumer Voice for Quality Long-Term Care.

Family members are often the first to notice subtle changes or signs that something is wrong and provide basic caregiving assistance. During the pandemic, nurses — already stretched thin by chronic staffing shortages — lost critical help from family, Brooks added.

Social isolation has health repercussions

A growing body of evidence over the years has shown that strong social connections have positive physical effects, akin to those of maintaining a healthy diet, avoiding harmful habits like smoking and being physically active, says Dr. Thomas Cudjoe, associate professor of geriatric medicine at the Johns Hopkins University School of Medicine.

“One of the key findings from literature is that healthy connections are associated with higher levels of survival,” he says.

For older adults, a lack of social connection is also linked to heightened risk of heart disease, stroke, mental illness and even vulnerability to viruses and respiratory illness.

A 2023 advisory from the U.S. Surgeon General reported that loneliness and social isolation can raise the risk of premature death by 26 percent and 29 percent respectively.

“Family caregivers are indispensable to the physical and emotional well-being of their loved ones, whether they are aging at home in their communities or residing in nursing facilities,” AARP’s Sweeney wrote in the letter to lawmakers.

It’s something Cheryl Vye knows all too well. Her husband, John, moved into long-term care in January 2020 after getting diagnosed with a progressive neurodegenerative disorder.

When the pandemic reached Florida, where they lived, Cheryl said John was isolated and began having trouble answering his phone. Without regular contact, their once-regular communication dwindled.

“It was shocking how fast he deteriorated,” she says.

Weaver, Vye and dozens of other caregivers and family members across the country have been petitioning lawmakers to pass the Essential Caregivers Act since it was introduced in 2021. They have become voices for those who were isolated during the pandemic.

That’s why the legislation sets “reasonable limits” on total lockdowns and “provides clear exemptions for end-of-life situations so that no resident is forced to spend their final moments without a loved one by their side,” Sweeney wrote. ​