As nursing homes and assisted-living facilities have restricted the movements of residents and eliminated most in-person visits by friends and families amid the COVID-19 pandemic, an unexpected elderly health crisis has emerged in South Dakota and across the country.
The mental and physical health of many residents of long-term care facilities are declining and in some cases leading to death from the extended isolation residents are undergoing due to restrictions on visitation and interaction aimed at preventing the spread of the coronavirus among a highly vulnerable population.
Recent efforts in South Dakota to use federal relief funds to increase testing for the coronavirus among facility visitors or to implement other measures to reduce isolation have failed, leaving many worried that more elderly residents will suffer the slow decline caused by loneliness, isolation and sensory deprivation.
Anecdotal reports of the decline of residents of long-term care facilities have become commonplace in South Dakota and beyond. Advocates for the elderly and family members of facility residents recently testified before a South Dakota legislative committee that patients with Alzheimer’s disease have declined rapidly, that residents are losing the will to live, and that some have died unexpectedly from causes not directly related to the virus.
Terryl Cadwell told lawmakers in September that her father, Jim Rumbolz, 88, was living an active lifestyle at the Avera Prince of Peace Retirement Community in Sioux Falls before the pandemic. When coronavirus restrictions were implemented, including limits on social activities and family visits, Rumbolz quickly deteriorated and died in mid-June.
“There was never a slip we noticed before COVID in any of his mental capacities at all, so this was really devastating,” Cadwell said. “I feel like it was the isolation that ended this life shorter than it should have been.”
As the pandemic drags on, medical researchers are starting to drill in on the potential consequences of extreme isolation among elderly people.
In a paper published this summer in the Journal of the American Medical Directors Association, researchers from the U.S. and Australia noted that severe loneliness was present among residents of long-term care facilities at double the rate compared with people living in a personal residence, and that the pandemic has exacerbated that difference.
“A feeling of loneliness has many deleterious consequences … including increased risk of depression, alcoholism, suicidal thoughts, aggressive behaviors, anxiety and impulsivity,” the article said.
Other studies have shown that loneliness is a risk factor for stroke, obesity, elevated blood pressure, worsening Alzheimer’s symptoms and death. Some studies have shown that extreme isolation and loneliness among the elderly can rival the mortality risks of smoking, obesity and high blood pressure.
Data compiled by the federal Centers for Disease Control and Prevention indicate that deaths among dementia patients in the U.S. have risen sharply during the COVID-19 pandemic, not only due to the virus itself.
In the second week of April, U.S. deaths due to dementia rose by 42% compared with the average deaths in the same week from 2015 to 2019.
From March to September 2020, dementia deaths in the country increased by as many as 2,500 per week compared with the average during that time period in 2015-2019. In all, about 15,000 more people with dementia have died since March due to “unexpected” causes, which could be from the virus but also for unknown reasons, according to the CDC.
Advocates for the elderly joined with family members of long-term care residents to make the case to state lawmakers in September that some of the $1.5 billion South Dakota received from the federal CARES Act pandemic relief fund should be spent on efforts to help facilities open safely to visitors.
Their pleas for rapid testing of potential visitors and other efforts drew sympathetic responses from lawmakers, but in the end fell short. The Legislature held a special session in October and did raise the aid level for long-term care facilities from the $100 million originally proposed by Gov. Kristi Noem to $115 million.
But rules set by Congress allow CARES Act money to be used only to offset net financial losses by businesses, including long-term facilities. None of the money, which must be spent by Dec. 31, can be used on capital projects or to create new programs or install new infrastructure. The additional $15 million was added to help long-term care facilities offset financial losses during September instead of only March through August, which was the allowable time frame for losses to be offset by most of the CARES Act money. Many facilities were already facing financial headwinds before the pandemic hit.
That leaves long-term care facilities with no new money to buy or use rapid COVID-19 tests on visitors who want to safely enter the facilities to visit relatives. Furthermore, the Legislature allocated no state funds for other unique efforts beyond testing that could improve visitor access to long-term care facilities, such as creating new entrances, allowing relatives to be designated as essential caregivers or developing structural ways to allow physical visits at reduced risk.
Efforts to find money and methods to help reduce isolation are continuing in South Dakota as more attention gets paid to the plight of long-term care residents, said Joe Schartz, public policy director for the Alzheimer’s Association of South Dakota.
“It’s been a groundswell of interest from people who haven’t seen mom or dad or grandma or grandpa for months except through a window or by phone, and they’re seeing them wither away,” Schartz said. “It’s not unique to South Dakota; it’s a national crisis and is happening all over the world.”
"People who haven’t seen mom or dad or grandma or grandpa for months except through a window or by phone [are] seeing them wither away. It’s not unique to South Dakota; it’s a national crisis and is happening all over the world.” -- Joe Schartz, Alzheimer's Association of South Dakota
Virus protections needed; health declines result
State Sen. Deb Soholt, R-Sioux Falls, has a keen interest in helping facility residents and their families, both as the chair of the Senate Health and Human Services Committee and as a daughter whose 91-year-old mother is in an assisted-living facility.
Her mother suffers from cognitive decline but is mostly self-sufficient in the facility, Soholt said.
And yet, since the pandemic hit in mid-March, Soholt has seen her mother’s mental, spiritual and physical condition decline.
“They don’t eat together, they don’t socialize together, they’re completely isolated,” Soholt said. “Think how we would be if, since the second week of March, we had been in only three rooms 100% of that time.”
Soholt, a registered nurse, said she supports the facility’s measures to protect her mother, other residents, staff and visitors from the virus that is especially deadly to the elderly. But Soholt said that as COVID-19 protections have restricted the movement of residents within the facility, reduced opportunities for socialization in the home and limited opportunities for family and friends to meet with and physically touch her mother, she has watched her mother suffer emotionally and her physical condition worsen.
“She’s a trooper,” Soholt said. “My mom has a great attitude and a sweet personality, but you can just see the exponential decline.”
Soholt supported efforts to use federal CARES Act funding to mitigate isolation of residents, and was disappointed that the money was unavailable. She said she would not give up on efforts to find money to pay for programs to test visitors or find other ways to bring residents and families together while still keeping them safe from the virus.
“We’ve gone so far from protecting them from the virus, and I understand why, but at the expense of any kind of quality of life,” she said. “It’s really about dignity and respect for our elderly.”
Soholt said she remains hopeful that there may be CARES Act funds allocated to South Dakota that do not get spent by the Dec. 31 deadline, and that Congress may allow that money to be used for reasons other than to cover net losses. For instance, the rules could be changed to allow unspent money in South Dakota to be distributed to facilities to implement rapid testing or other programs to safely allow visitors to enter the homes.
If that fails, Soholt said she expects that elderly advocates will appear before the Legislature during the 2021 session starting in January to request state money for programs aimed at mitigating isolation of long-term residents.
Soholt, who will leave the Legislature before the upcoming session due to term limits, said the isolation issue has been put on the radar of the governor and others in government and will likely be seen as a priority in 2021.
“We want to provide funded support for the facilities to be able to develop their plan,” Soholt said. “I’m very encouraged that the legislative branch is interested in trying to do something to mitigate the isolation for our elders.”
Dementia patients at higher risk
Schartz, who testified twice before legislative committees this fall, said research on Alzheimer’s disease and dementia shows that patients fare best when they have regular routines and are surrounded by friends and family in their own homes.
In addition to losing the stability of living at home, dementia patients who reside in long-term facilities are now losing that critical human touch and sense of familiarity due to restrictions on visitation and interaction.
“When you pull someone with Alzheimer’s or dementia out of their routines and you disrupt that and their loved ones are turned away, that isolation can cause the disease to progress and results in worsened outcomes or death,” Schartz said. “The isolation is leading to premature deaths for these people.”
Those cognitive conditions are common among people in long-term facilities across the country, Schartz said. In the U.S., about 48% of nursing-home patients and 42% of assisted-living residents have Alzheimer’s or dementia, he said.
Meanwhile, Schartz said his association and other elderly advocates expect to file a bill, as they did without success last year, for South Dakota to create a new dementia coordinator position within state government.
The coordinator could apply for federal grants, improve training for front-line workers and establish programs to aid Alzheimer’s and dementia patients and caregivers.
About 18,000 people over 65 have Alzheimer’s disease in South Dakota, and the disease if the fifth-leading cause of death in the state. South Dakota has roughly 140,000 people in that age group overall.
The number of patients is expected to climb as the population ages, and the number of dementia patients is undoubtedly rising as well, Schartz said. The state is home to about 40,000 people who are caregivers to patients with Alzheimer’s, and they too have suffered great emotional and physical stress during the pandemic, Schartz said.
“I wish that you could hear their phone calls to our office; I wish you could hear the panic and the strain and the hurt in their voices,” Schartz told lawmakers in September. “The pandemic is pushing these families to the breaking point.”
Experts say the negative effects of isolation on long-term care residents, staff and family members will worsen during the winter months in South Dakota because the few outdoor visits taking place now will become less frequent and the facilities will become more locked down from the cold.
“At the end of the day, nothing is going to replace in-person visiting and human contact, which as humans we all rely on for part of our health and part of our humanity,” he said. “This has gone on for many months, and it’s only going to get much worse as we approach winter and outdoor visitation will become much tougher.”
Facilities find ways to reduce isolation
Many facilities have allowed residents to have brief visits with patients outdoors on patios or in courtyards, though without physical touching. Other novel methods have been used to reduce isolation, including visits through windows, via internet connections or even through messages left for staff to deliver to residents.
When the pandemic hit in March, assisted-living facilities such as the Edgewood Rapid City senior living complex underwent immediate and significant changes to keep residents and staff safe.
Edgewood Director Erin Andersen said restrictions on visitation and movement within the facility, which has about 95 residents mostly in small apartments, were needed to fight the spread of the coronavirus but took a noticeable emotional and physical toll on residents and staff.
“Prior to COVID, we were like an apartment building where people could come and go and visit as they pleased,” Andersen said. “It was a beehive of activity.”
Under the threat of the virus invading the complex, shopping trips by residents were banned, visitors were not allowed inside, communal meals were replaced by food delivered to individual rooms in disposable containers, and popular activities such as bingo were halted.
Restrictions and testing of staff were heightened when a resident tested positive for COVID-19 early in the pandemic, even though no one ever got sick, Andersen said.
“We didn’t want to be cruel, but we also knew that if it got into our building, it could be really, really deadly, so we wanted to protect everybody even if it wasn’t always the most popular decision,” Andersen said.
A general pall fell over the facility and some situations in particular were especially hard to endure, she said.
“We have one resident whose husband was in a skilled-care community and he passed away from COVID,” Andersen said. “She was not able to see him or be with him in his final days, and it was devastating.”
As the pandemic dragged on, a staff member at Edgewood heard about an effort by an Idaho facility run by the Edgewood group that allowed for a safe way for residents and visitors to physically connect.
After some research, and with donations of materials from several Rapid City businesses, the staff at Edgewood built a so-called “hugging wall,” an 8-foot-tall, 6-foot-wide wooden structure that resembles a window frame in which visitors and guest can embrace. The two users are separated by a vinyl sheet that is cleaned after each use and are able to safely hug by wearing long plastic sleeves that typically would be used to artificially inseminate cattle. The plastic barriers prevent the spread of the coronavirus while allowing two people to fully embrace, Andersen said.
“It does get used a lot,” she said. “And the reactions from people the first time they touched a loved one, it was tears of joy, and actually staff cried too, because you could see the relief. You could see a lot of that loneliness wash away with just a 30-second hug.”
Family members in pain as loved ones suffer
During phone testimony before the legislative Joint Health & Human Services Committee in September, Cadwell of Sioux Falls shared the story of her father’s mental and physical decline and eventual death that she blames largely on isolation he endured during the pandemic.
Cadwell said her father, Jim Rumbolz, had a multi-faceted career that included stints as a state trooper, a criminal-justice educator at the University of South Dakota and finally as a hospital administrator in Custer, S.D. After retiring to Sioux Falls, Rumbolz most recently lived at the Avera Prince of Peace community, where he was well known as active, gregarious and full of life.
Rumbolz, who buzzed around the facility on a scooter, eschewed games like bingo and instead sought out more stimulating and meaningful activities to keep his mind active and sharp, Cadwell said.
He was part of a book club, took art lessons and formed a coffee club to discuss current events. He exercised regularly, read a newspaper every day and relished time spent with friends or relatives either in person or by phone.
“My dad would kiss my hand every day before I left, and I was able to hug him,” Cadwell said, fighting back tears.
But then the COVID-19 pandemic hit, and Cadwell said her father’s overall condition quickly deteriorated as opportunities for activities and visits were restricted and touching was not allowed.
Rumbolz became fearful of caregivers who wore masks, gloves and protective gowns. He felt isolated because he could no longer hear or read the lips of nurses and others as they spoke through masks. He longed for the touch of his daughter and other family members, but was unable to have physical contact with anyone.
In a period of just a few months, Cadwell’s father began to falter, and he died on June 16. In a follow-up interview with News Watch, Cadwell said her father’s official cause of death was a swallowing problem that required his being fed through a tube. He was never diagnosed with COVID-19, she said.
Cadwell insists that the loss of meaning, purpose and stimulation suffered by her father hastened his mental and physical decline and played a large role in his death.
“I believe we are of mind, body and spirit,” Cadwell said. “You shut that off on a guy like that, with no joy from eating, no activities that were his lifeblood, and he can’t see me or hear the nurses, and the joy of life was gone.”
Cadwell’s story is not uncommon among families of residents of long-term care facilities.
Doctors and caregivers have reported that patients with Alzeheimer’s or dementia have become withdrawn or show slowed mental cognition. Some patients have suffered falls, become more susceptible to infections and shown sudden frailty.
Soholt said she noticed her mother is walking with more of a shuffle and may not be as physically strong as she was before the pandemic.
“I’ve seen a change in her gait, and there’s no way to stay strong,” Soholt said. “The fact they’re not out walking in hallways, there’s a strength decline, and they’re shuffling their feet because the space they’re in is so small.”
Lee Raines of Sioux Falls is suffering through what she said is the devastating decline of a man who became the love of her life after a 50-year separation.
Raines, 82, and her husband, Tom, knew each other in the 1950s growing up in eastern South Dakota. They led separate lives, and then were reintroduced in 2006 when both were free of prior relationships; they married in 2007.
After several happy years, Raines began to notice problems. On one occasion a few years ago, Tom was driving them on the interstate near Brookings and had to ask which exit to take to a city where he had worked as a banker for a quarter century.
Tom was eventually diagnosed with Alzheimer’s disease in 2015, Raines said, and he later moved to an assisted-living facility for safety. The disease took a toll on his mind and body, but since the pandemic struck in March, and restrictions on visitation were implemented, his decline has become more rapid.
“Tom was such a bright person, intelligent and fun and always telling a joke, and to see that decline so quickly …” Raines said. “I’ve seen the slow decline since 2015, but he’s definitely declining faster in the past several months.”
His physical condition has also deteriorated amid the pandemic, Raines said, noting that Tom, 82, has lost more than 20 pounds.
Now, they are only able to visit briefly together outside, six feet apart, with no touching allowed. Tom struggles with wearing a mask that sometimes entangles with his hearing aid, which then falls out. Raines tries to stimulate Tom’s mind and memory by asking him about his childhood or writing things on cards that may spur recollections of the past and generate a greater connection to the present.
The inability to fully communicate, and especially the restriction on touching, are especially trying for her husband and other people with Alzheimer’s, many of whom rely on close relationships to stay healthy and aware, Raines said.
Though the visits are a mix of love, hope, appreciation and some sadness, the trips alone back to the home she once shared with Tom can be crushing, Raines said.
“Sometimes I cry all the way home,” she said. “It just breaks your heart, it really does.”
Raines is pushing state government to implement a rapid COVID-19 testing program for visitors to long-term facilities that she said could provide results in less than 20 minutes and allow for safe in-person visits by family and friends. So far, no widespread testing programs for visitors at long-term facilities have been implemented in South Dakota.