From her wheelchair, Pam Reece leads an exercise class for her fellow residents at Wakefield Care and Rehabilitation Center in Kansas.
Nowadays, the class is not in the activity room, where residents used to gather in a tight circle. It’s in the hallway, with residents masked, more than 6 feet apart, and stretching between their door frames.
It’s one of the few times every week that Reece gets to see other people.
People in nursing homes have been hit especially hard by the coronavirus. More than 40% of COVID-19 deaths nationwide have been linked to nursing homes and other long-term care facilities. But the pandemic has also taken a less obvious toll on residents by increasing the loneliness and isolation of people who were already largely invisible in our society. The challenges have inspired innovative programs to foster human connection in the face of mandates to maintain social distance. And many adults themselves are finding creative ways to keep loneliness and sadness at bay.
Reece, 54 has been at Wakefield for the past three years due to a heart condition and Guillain-Barré, an auto-immune syndrome that attacks nerves. The lockdown to mitigate the spread of the virus changed her life. Meals and activities, once communal, are now taken in isolation. Residents are mostly confined to their rooms. If they have to leave the facility for essential medical care, such as surgery, they are subject to a mandatory 14-day quarantine upon return. Visits from friends and family, if any, must be scheduled in advance and conducted through a closed window.
Reece keeps herself engaged with activities such as coloring, cross stitch, and solitaire. In addition to her hallway exercise class, she participates in hallway bingo. Once a week, Reece talks to a volunteer from Friendly Voices, a grassroots project that sprang up in response to the pandemic to facilitate phone friendships between people in nursing homes and volunteers.Reece and her volunteer friend chat about their days, their lives, and goings-on. “She wants to visit me when this is all over,” Reece said. “It makes me feel good to talk to her.”
Dilip Jeste, a UC San Diego research professor and geriatric neuropsychiatrist is conducting a study on loneliness in residents of retirement communities. He has found that the reaction to the pandemic among older adults has varied considerably.
“I have bad days. Some days, I think, ‘Do I even want to get up?’ It really is hard to be locked down. But I really do try to find things to keep me busy so I’m not constantly thinking about being locked down.” — Pam Reece, Kansas
“There are many older people who are learning new things, keeping themselves physically and mentally active, and saying there have been more difficult times, and that they know the crisis will pass,” he said. “And there are also many who are feeling depressed, sad and anxious because the isolation makes it hard for them to go out to do exercise, to get groceries and to visit their loved ones.”
While isolation and loneliness often go hand in hand, they are different concepts. Isolation is objective and can be measured in the number of relationships. Loneliness is the subjective experience of being disconnected from others and depends heavily on the quality of relationships. People can, for example, feel lonely in a crowded room.
But there are no crowded rooms these days, and isolation and ageism are exacerbating loneliness in seniors. And loneliness, like smoking, shortens lives. Research has shown that loneliness is associated with a 29% percent increase in the risk of heart disease and a 32% rise in the risk of stroke.
“We need to think about the long-term effects of loneliness,” said Stacey Schepens Niemiec, an occupational therapist and researcher at University of Southern California. “It’s linked to diminished sleep quality, higher blood pressure, reduced executive functioning, and reduced pleasure and engagement in activities.”
People who feel lonely are especially receptive to negative messages. And older people are being bombarded with ageist messages, as states reopen and people say — wrongly, as it happens — that most people are safe because only the elderly and the immunocompromised get sick and die of COVID-19.
“The stigma (against elders) is growing,” Jeste said. “Anytime you mention the virus and risk, immediately people think of older adults. They think of the people more likely to be hospitalized, to take up beds in the ICU.”
The digital divide further compounds the isolation of seniors. Many older adults have no way to move their social lives to the internet. “They’re used to visits with friends and family, they’re used to going out every once in a while, and they can’t do any of those things anymore,” said Jeste. “The same thing has happened with younger people, but the difference is that younger people have been using technology for a longer time.”
Organizations across the country are using creative ways to reach out to isolated elders in facilities and in the community.
Love for the Elderly, a nonprofit that sends letters to the elderly, saw an uptick in numbers, with 14,234 letters sent to 233 senior communities in May. Jacob Cramer, who was 13 years old when he first started the nonprofit in 2013, is now creating video messages for facilities that are no longer allowing mail.
Age-Friendly Student Senior Connection, a program started by Bonnie Olsen, a geropsychologist and researcher at USC, matches isolated older adults with health care professional students at the university. Students like Nicole Manalo are encouraged to interact with the older adults, provide resources, and teach them to use digital platforms such as Zoom so they can use technology to connect with others — including their doctors.
“Switching from voice to visual really improves the quality of interaction of both student and senior, but also when it comes to medical care,” said Olsen. “It’s really hard for many older adults to get comfortable and get organized around doing telehealth medical visits, so a lot of them are just not getting the care that they need.”
Manalo has been paired up with an older adult we’ll call Hana (she asked that her real name not be used), and found that technology made a difference. “When I first called her, she was struggling to hear what I was saying, and I would have to communicate a little bit more slowly, and a little bit more simply,” said Manalo. “It was really exciting when we first started FaceTiming. She said she was able to understand me a lot better because she could read my lips, which actually allowed for greater communication between us.”
Hana, who recently turned 97, talks with Manalo about her family, her activities and her past, including her experience in internment camp for Japanese Americans in the 1940s. She exercises, gardens, and, before she had to shelter-in-place, she drove to visit family and run errands. “She’s definitely knocked out a lot of my preconceptions of what a person can do at 97. In a lot of ways there really are no boundaries for what people at that age can do.”
For Hana’s birthday, Manalo put on a violin concert via FaceTime. She played Celine Dion’s “My Heart Will Go On” and Kyu Sakamoto’s “Sukiyaki,” while Hana sang along.
LGBTQ+ older adults are particularly vulnerable to the social and emotional fallout of the pandemic. According to a 2018 survey by AARP, they are more likely to live alone and experience severe social isolation. They are also more likely to rely on “chosen” families for caregiving support. These arrangements have become complicated these days, for several reasons. Chosen families tend to be in the same age range, so they, too, have a high risk for COVID-19. And they lack legal ties, so they are not covered by paid family leave laws and other benefits, which can make caregiving difficult.
The nonprofit SAGE provides services and resources to LGBTQ+ older adults primarily in New York City. When the city was locked down, staff began checking in with their 3,000 regular clients to make sure they were getting the food and medicine they need.
“We provided that support for many weeks… then we started to hear from our participants that while they had their concrete needs met, their mental health needs were starting to surface,” said David Vincent, chief program officer at SAGE. The organization shifted to virtual programs, from a “Chamber Queer” ensemble and a Black lesbian social group to a Feldenkrais course, a gentle method of movement that promotes greater awareness of mind and body.
Virtual programming allowed for an unexpected benefit: SAGE extended its reach to homebound and rural seniors. “We’re able to reach audiences which we have never been able to reach before,” said Vincent. “Virtual programming will have a place in the delivery of services for the years to come. There are so many homebound and rural older adults who haven’t been getting services because we as service providers have only been thinking in the brick-and- mortar world, and have not been able to adequately serve this population. With this current time, it’s forced us to think more about how to provide services.”
As the nation struggles to shift back to business as usual, vulnerable adults are almost certainto wrestle with loneliness for a long time.
In the meantime, Pam Reece waits patiently for the day it’s safe to go out again, coloring pictures and completing jigsaw puzzles. She likes to sit with the curtains open, looking out the window, watching the birds fly by and the children frolic on the swings below.