By Jennifer Abbasi, JAMA, July 16 2020
Residents in nursing homes that remain locked down during the novel coronavirus pandemic face another silent threat: social isolation. In early July, long-term care insiders said many older adults in homes with ongoing strict social isolation had increased depression, anxiety, worsening dementia, and failure to thrive.
“The physical and psychosocial wellbeing of residents has been tremendously impacted by the isolation and restrictions,” Lori Smetanka, JD, executive director of the advocacy group National Consumer Voice for Quality Long-Term Care, said in an email.
As the pandemic not only continued but also surged throughout the summer, nursing homes faced a dilemma. Should they continue to ban visitors and group activities to protect their residents or should they relax restrictions to lessen social isolation’s mental and physical harms?
In late June, the Centers for Medicare & Medicaid Services (CMS) clarified that locked-down nursing homes could be creative with communal activities—book clubs, movies, and bingo, for example—and outdoor family visits, even if they took place in a facility’s parking lot. But CMS emphasized that precautions including personal protective equipment (PPE) and social distancing should be taken. By July, 28 states had issued reopening guidelines— nearly all permitting only outdoor visits—according to advocacy organization LeadingAge.
“Visitation varies significantly state by state, for reasons that have little to do with differences in coronavirus prevalence or risk,” Richard Feifer, MD, MPH, chief medical officer of Genesis HealthCare, which operates nursing homes and senior living communities in 26 states, said in a July 1 email. “In Connecticut, these open-air visits have been allowed for weeks, but other states like Pennsylvania and Rhode Island are slow to ease restrictions.”
In Colorado, where controlled outdoor visits were allowed, many facilities maintained restrictions anyway. Their owners were wary of capricious surveyors—state inspectors with the power to levy steep fines for minor lapses, according to Lea Watson, MD, MPH, a psychiatric consultant to more than 50 of the state’s long-term care facilities. The centers’ owners “are living in complete fear of getting exposed for an infection control violation and so they’re being more strict than they need to be,” she said in an interview.
Watson and other physicians said that some nursing homes were moving too slow. “With masks we should be letting patients eat in congregant dining, do activities with appropriate distance and, most importantly, visit with family and caregivers,” said Dallas Nelson, MD, the medical director of 2 nursing homes in Rochester, New York.
Research suggests the restrictions could have serious health implications. A National Academies report on older adults released earlier this year concluded that social isolation can hasten premature death from all causes, with a mortality risk potentially on par or even greater than factors like smoking and obesity.
In fact, for some nursing home residents, the prolonged isolation may have been deadly, experts told JAMA. Watson said staff from multiple homes reported that residents had stopped eating and had “given up” without family visitation. “We now have a handful of people we think have actually died because they’ve been in isolation and haven’t had any contact at all with their families,” she said.
Beyond Window Visits
Since the coronavirus disease 2019 (COVID-19) lockdowns began, many nursing homes have made substantial efforts to keep residents socially engaged. Stretched-thin staff coordinated additional phone calls and video chats with family, for example, and facilitated family visits and entertainment—live music, parades, and therapeutic animal drop-ins—through windows. Rehabilitation departments took residents outside for physical and occupational therapy, providing sensory stimulation on top of functional improvements. And residents’ loved ones were encouraged to send recordings of their voices and drop off photo albums to keep memories alive.
With indoor congregating for the most part banned, centers used their closed-circuit internal television systems to broadcast activities to patients in their rooms. Some homes allowed residents wearing masks to sit in their doorways so they could see one another from a distance, play bingo, do dance steps in unison, or choose a snack or a (disinfected) book from a mobile cart.
But not all nursing homes offered these solutions, Watson said. Many homes were too short-handed, thanks to the industry’s longstanding staffing problems that were exacerbated by the pandemic, and outside volunteers weren’t allowed in.
Adding personnel could give staff members more time to spend on activities. But addressing the workforce crisis in long-term care won’t be easy. Certified nursing assistants, who spend the greatest number of hours a day at the bedside with older people, need higher salaries, better benefits, and a career ladder to climb. “Those have to become jobs that people want to do,” said Alice Bonner, PhD, RN, a senior advisor at the Institute for Healthcare Improvement who was a long-term care geriatric nurse for more than 30 years.
Regardless of staff size, the solutions to mitigate loneliness haven’t been perfect. Bonner runs national COVID-19 nursing home “huddles“ via video conference every weekday. In an interview, she said that concerns about social isolation had become “absolutely pervasive” across the industry.
“The nursing home teams are trying desperately to engage older people who are residents in these activities, but it’s really hard to do day after day,” she said. “It’s just not the same as the human interaction.”
Physically distanced communal activities weren’t an option for residents who did not have the cognitive ability to keep their masks on and to stay 6 feet from others. And video chats and window visits, although helpful for some, were counterproductive for many residents with dementia, who often found these interactions confusing and frustrating.
“Although window visitation allows residents to see their family, it does not provide the same positive impact as hand holding, a gentle embrace, or other physical forms of affection and communication,” Christina Beauregard, the social services director at a Hanover, New Hampshire, nursing home, said in an email.
For many residents, communal dining and daily visits from family members or paid caregivers had been triggers to eat. Without those familiar faces and routines, some residents refused food and lost weight. “Failure to thrive has become rampant” in nursing homes during the COVID-19 lockdown, Christopher Laxton, executive director of the Society for Post-Acute and Long-Term Care Medicine, known as AMDA, said in an email.
Nelson rounds on about 160 nursing home residents. In an interview, she said that some had become much less interactive during her visits to their rooms. They slept through her attempts to talk to them, a change that she attributed to the loss of stimulation they previously got from visitors and group activities. “It’s accelerating their dementia and failure to thrive process,” she said, sometimes leading to early deaths.
Nelson noted that the staff’s face shields, masks, and physical distance—all necessary for infection control—probably contributed to the residents’ distress. “You can’t see their smile, you can’t see their expressions,” Bonner said of the staff. “Part of human nature is to see those things.”
The isolation also fueled another alarming scenario in nursing homes, according to Watson, an adult and geriatric psychiatrist. “I’m seeing a huge increase in providers wanting to prescribe more antidepressants, more antipsychotics, more anxiolytics,” she said.
Some of the requests were for residents who were withering away. Others were to calm new and disruptive behaviors.
Watson said she frequently discouraged psychotropic medications in these cases and instead suggested that clinicians talk with the home’s administrator and nursing director about increasing activities. Residents could be allowed to wander in hallways cleared of other people or in an outdoor space with a one-on-one aide, for instance.
By early July, most of the nursing homes Watson worked with had begun expanding to controlled outdoor visitations, but inside activities were still slow to return to normal, she said. Exactly what each nursing home chose to do inside and out was highly variable in her state and was often based on staffing levels. In homes where new cases were identified, residents were confined to their rooms, conforming with CMS rules.
Family members understandably were losing patience. Some knew their loved ones were wasting away from loneliness and lack of stimulation. Others received calls at all hours from their relatives in homes asking why they hadn’t visited that day. Dementia can worsen under stress and with changes to daily routines. During the pandemic, some residents with the condition frequently called 911 because they thought that something was wrong.
“It’s been chaos,” Watson said. “The antidote is unequivocally to open up as much as possible, in every way possible, as soon as possible, while still following the rules.”
To that end, AMDA recently endorsed guidance that New Jersey medical directors developed for limited outdoor and indoor scheduled visitations in long-term care facilities. According to the recommendations, which the clinicians sent to the state health department, visits should depend on the facility’s case status; adequate staffing, testing, and PPE; contact tracing capability; and other factors. Visitors should undergo a temperature and wellness check and the visits should be monitored for social distancing and face mask use. The guidance also supports limited in-room visits with proper PPE and social distancing for bedbound residents with dementia who need psychosocial support.
The Consumer Voice’s Smetanka also advocated for visits. “We think there needs to be a common sense approach to balancing the need to protect residents from the spread of COVID-19 with allowing families and other support persons back into facilities to provide critically needed support to residents,” she said.
As the weeks and months passed, many nursing homes eventually gained access to adequate PPE and testing and were able to control or prevent outbreaks. It’s time now for those homes to loosen social restrictions, albeit carefully, Watson said. Prescheduled, supervised outdoor visits should be encouraged and facilitated. Congregate dining and activities—socially distanced and with masks—should resume. And residents experiencing failure to thrive should be allowed in-room visitors as part of compassionate care exemptions, which have been limited to end-of-life scenarios.
An example from Nelson’s practice explains why. “I just put a patient who cleared COVID on hospice due to failure to thrive,” she said. Before the resident fell ill, she liked to be in the center of the action on her floor. Now, Nelson said, “both COVID damage and isolation are accelerating her decline.”