En español | In February, Lorri Evans’ mom was walking the equivalent of four blocks, twice a day, around her memory care facility in Santa Cruz, California. “She used a walker for support,” Evans says, “but her legs worked fairly well for someone who is 99."
"Just a year ago, she was dancing at my daughter's wedding,” Evans says of her mom, Helen. “But now, she's fallen into an abyss.”
When the coronavirus pandemic hit the U.S., sending long-term care facilities into lockdown, Helen was confined to the second floor of her complex — where her room was located — for months. Her outdoor walks ceased, and so did her mobility. She became bedbound. Her mind, already battling dementia, deteriorated, too.
In May, she was placed in hospice. In July, Evans brought her home to begin what she believes will be the final months of her mother's life.
"Look, I'm sure she would have declined somewhat, but I know in my heart the isolation accelerated it,” Evans says. “She would have made it to well over 100 but that's not going to happen now. ... She's collateral damage of this COVID-19 seclusion, passing away because of a broken heart."
Data on the mental health effects of the long lockdown at America's nursing homes and other long-term care facilities is scant. But experts, resident advocates, and those with loved ones on the inside say that lockdown is fueling a mental health crisis that's amplifying the devastating impacts of the pandemic on the long-term care industry, where more than 70,000 long-term residents and staff have already died from COVID, accounting for 4 in 10 pandemic deaths. They say that feelings of loneliness, abandonment, despair and fear among residents — and their toll on physical and neurological health — are only pushing the pandemic's death toll higher.
"We're hearing from a number of family members and [long-term care] ombudsmen that many residents are just losing the will to live,” says Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care. She highlights that in Minnesota, “social isolation” is being listed as a cause or contributing factor on the death certificates of some long-term care residents who have died during the pandemic. “Failure to thrive” is a common cause being listed in other states.
Some facilities are taking steps to combat the problem. Most states are allowing nursing homes that have successfully managed or avoided COVID cases to resume communal activities and in-person visits. But even in those cases, activities require social distancing and most visits are infrequent, short, outdoors and highly regulated — nothing like conditions before the pandemic.
And Carla Perissinotto, M.D., associate chief of geriatrics clinical programs at the University of California San Francisco, says there's no end in sight. “In a regular flu season, we say to ourselves, ‘OK, I just need to get through the next couple of months and I'll be fine,’ but we don't know what that time frame is right now,” she says. “I thought we were coming out of this [in June] but now we're right in the middle of it again."
'I feel like I'm in prison’
Even before the pandemic, social isolation (the objective state of having few social relationships) and loneliness (the subjective feeling of isolation) were considered serious health risks for older Americans.
A body of evidence shows that these factors significantly increase a person's risk of mortality from all causes, potentially rivaling the risks of smoking, obesity and high blood pressure. Social isolation and loneliness are also associated with higher rates of clinically significant depression, anxiety and suicidal ideation.
But there is more than mental health at stake. Isolation and loneliness are associated with a 50 percent increased risk of developing dementia, a 32 percent increased risk of stroke, and a nearly fourfold increased risk of death among heart failure patients, according to separate studies. With 43 percent of adults age 60-plus in the U.S. reporting feeling lonely, the rates of social isolation and loneliness were already at the level of “a public health crisis,” according to Perissinotto, a coauthor of the report.
Lockdown measures appear to be exacerbating that crisis in long-term care facilities. “We're seeing an increase in depression, anxiety, frustration and irritability,” says Heather Smith, lead psychologist at the Milwaukee Veterans Affairs Medical Center. “We're also seeing an uptick in dementia-related behaviors,” she says, noting that a significant percentage of long-term care residents — at least half, according to the Centers for Disease Control and Prevention (CDC) — suffer from dementia diagnosis of some kind. “So what we're seeing is not a surprise.”
Deirdre Anderson says that her father, Richard, 85, who lives with dementia in a nursing home in Austin, Texas, fits that description. “My dad is usually super chipper,” she says. “He was social in the facility before going into lockdown. He had a fair amount of friends, and they all seemed to really like him.”
But without communal meals and group activities, Richard has lost those connections. “I noticed before lockdown that his roommate always kept the curtain in the middle of the room closed – the blinds, too,” she adds. “He actually asked me [one] day, ‘Is it nighttime?’ — which means he can't even see outside. He said, ‘I feel like I'm in prison now,'and he never normally says that,”
Nursing homes were prodded into lockdown in mid-March. COVID's spread prompted the federal Centers for Medicare and Medicaid Services (CMS) to issue guidance urging a ban on visitors and nonessential personnel from the nation's 15,400 nursing homes. Internal group activities, including communal dining, were canceled, too.
Many other long-term care facilities, such as assisted living facilities and memory care units, followed suit. None wanted to be the next Life Care Center of Kirkland, Washington, which lost 37 people to COVID-19 via an early outbreak of the virus that began in late February. Still, dozens of similar outbreaks followed in facilities across the country: In April, new COVID-19 cases and deaths in long-term care facilities peaked across the nation. Although cases decreased in May and June, they increased in July and August, according to an analysis by the Kaiser Family Foundation. Similarly, deaths in long-term care facilities decreased from May to July, but have increased in August, the analysis shows.
"We're faced with this heart-wrenching tension,” says geropsychologist Sheri Gibson, a private practitioner and clinical supervisor at the University of Colorado Colorado Springs, “between protecting the medically fragile older adults from the virus and cutting them off from outside support and connection, which we know is vital to their overall well-being.”
'Her brain has turned to mush'
Almost six months on, most nursing homes are still under some form of lockdown. So it's not surprising that Tami Crady has fielded “desperate calls of ‘Get me outta here, this is prison’ “ from her father, Dave, who lives in a nursing home in Sonoma County, California. For months, her 82-year-old father, who has Alzheimer's, has been “incredibly frustrated” by the ways that the lockdown has interrupted his routine.
For example, “his hair was crazy,” explains Crady, because of the ban on nonessential workers, including hairdressers. “So he somehow got ahold of an electric razor and cut his own hair.” The razor was confiscated, causing an argument between Dave and the staff that left Dave wanting to storm out of the facility.
Crady managed to calm him down over the phone. “He asked, ‘Why won't they give me my razor back?’ and I said, ‘Well, maybe you're going to go around cutting everyone else's hair’ and we had a good laugh,” she says.
Crady knew then that her father's mental health was deteriorating. Now, he's also battling COVID-19 after a recent breakout at the facility. Crady doesn't know which toll will be worse: “As much as COVID could kill him, lockdown could, too. ... I just hope he makes it through.”
Judith Gimbel also worries that the isolation is killing her mom. “I don't think she's deteriorating I know she is,” she says of 95-year-old Ida, who lives in an assisted living facility in Gloucester County, New Jersey. “She's dying a slow death in there.”
Before the pandemic hit, Ida participated in every activity the facility offered, says Gimbel: “She went down for morning exercise; she ate all three meals in the cafeteria; if they had crafts, she did craft; if they had music, she did music — anything.” Without daily stimulation, Gimbel thinks her dementia has progressed. “She sometimes doesn't recognize me, and that was never the case before,” she says. “Her brain has turned to mush.”
For many residents, the mental tolls are leading to declines in physical health. “We're seeing withdrawal from care,” says Smith, the psychologist in Milwaukee, “so refusal to eat or take medication or engage in self-care, like showers or exercise."
Those behaviors can lead to increased weakness, weight loss and pain perception, which put people more physically at risk. Weakness, for example, can contribute to falls, which in turn can produce other life-threatening health problems.
Until recently, Paul Da Veiga considered his 91-year-old mother, Philomena, to be physically very healthy. But under lockdown in her nursing home in Artesia, California, the stress seems to have worsened her dementia. “She doesn't understand why we're not there visiting her,” says Da Veiga. “She thinks something bad has happened to us.”
He estimates that she has lost around 20 to 25 pounds as a result: “A pretty significant amount when you're only a small lady.” Without visits from her family, she's also requesting to spend most of her days in bed. Her ability to speak is also declining. “I think it's the depression, I really do,” Da Veiga says.
'Many of these care facilities are on their own’
Many long-term care facilities feel hamstrung when it comes to finding solutions. “I don't envy them at all because they're trying to keep the virus out of the facility, but in doing so they're worsening mental health,” says Perissinotto. “It's a double-edged sword where very, very angry families say, ‘How dare you risk bringing COVID-19 into the facility,’ while others say, ‘How dare you not let me see my parents for four months.’ “
Federal guidance on resuming communal activities and visits puts the onus on state and local officials to figure out when it's safe to do so. So far, more than 30 states have issued guidelines or both nursing homes and assisted living facilities, which outline standards – for testing, infection rates, levels of personal protective equipment, and others – that the facilities must meet before recommencing visitation.
But "many of these care facilities are on their own,” says Patricia McGinnis, executive director of California Advocates for Nursing Home Reform, noting that the guidance is often long, convoluted and difficult to follow, and that limited resources and funding can prevent facilities from meeting the criteria. She says it has led to “inconsistencies everywhere” when it comes to combating isolation and loneliness. The disjointed framework for America's long-term care industry, with a mix of federal and state rules and regulators, is another barrier to a coherent national response.
Still, there has been a “surge of creativity” by some long-term care operators amid the crisis, says the University of Colorado's Gibson, who has been running webinars on maintaining connectivity during the pandemic for the national long-term care ombudsman program. Many facilities are going ahead and hosting outdoor — or window — visits to facilitate contact with loved ones, she says. Others are using videoconference platforms like FaceTime and Zoom to enable virtual visits.
AARP is advocating for federal and state laws that would require long-term care facilities to facilitate such virtual visits, although its ultimate goal is “to make it safe for all families and friends to visit residents in person again,” says Elaine Ryan, AARP vice president for state advocacy and strategy integration.
The reintroduction of socially distanced day-to-day activities, like bingo games and church services, at many facilities has also kept residents connected and engaged.
For Joan Shenberger's 96-year-old mother, Wilma, who lives at a skilled nursing facility in Franklin, Indiana, these developments have proved pivotal. Before the pandemic, Shenberger and her sister would visit their mother every few days to ensure she ate a big meal that day, and help out by doing the laundry and other tasks. In lockdown, she began losing weight.
"She's a social butterfly and [the nurses] felt when she was isolated in her room, she wasn't eating as well,” explains Shenberger. “So they got permission for her to sit at a table in the dining room by herself and have one of the men she likes to talk to sit at the table next to her. With their efforts, she's gained back the weight.”
Shenberger says the outdoor visits are also helping with Wilma's Alzheimer's. “Her memory was a big concern — we thought it was going to be hit hard, but we haven't seen that yet,” she says. “She recognizes us, and although she keeps telling us she wants to give us a big hug, outdoor visits are better than nothing.”
For Ida, meanwhile, the outdoor visits have made her frustrated and more depressed, her daughter Judith Gimbel says, because there's no physical contact. “She's 6 feet away from the table; she can't hear me,” Gimbel says. “I can't pass her my phone to show her pictures of her great-grandson. I can't share the food I bring with her. I think it's worse than no visits at all.”
The lack of touch is affecting many residents, says Gibson, particularly those who are suffering from dementia, like Ida. “We know that tactile sensation is one of the senses that remains intact, even throughout more severe levels of dementia,” she says, “so taking that away can be harmful.”
As the crisis continues, Gibson encourages the family, friends and representatives of residents to talk about mental health: “The most important thing that any of us can do is validate how difficult this is and normalize for the resident their anxiety or feelings of loneliness or hopelessness.”
Perissinotto agrees. “Talking about this is incredibly healing because it acknowledges you are not alone in this experience,” she says.
Editor’s note: Helen died on September 18, at age 99. The primary cause of death was Alzheimer’s.