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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.
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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.”