All policies have consequences was the theme of the final report conducted by Mathematica to review and analyze nursing home policies and practices during the first six months of the COVID-19 pandemic.
“This report gave us an evidence base to support the concerns that the policies came at a cost of the physical and emotional wellbeing of those who live in facilities,” said Patricia Rowan, project director and health services researcher at Mathematica in a presentation to legislators on Monday afternoon.
In other words, even if a policy is formulated with the best of intentions, and necessary to prevent one problem, it might still create another.
Mathematica’s final report found that nursing home residents in Connecticut have suffered a significant decrease in wellbeing, including an increase in depressive symptoms and weight loss, since the outbreak of COVID-19 in March.
According to data available from mid-April to mid-May, nursing home residents showed a 15 percent increase in symptoms of depression compared to before the pandemic. The report also found that during the months of June and July the number of residents who had lost more than five percent of their body weight doubled in comparison to the month of March.
The study also showed an increase in severe pressure ulcers in early May, a decline in cognitive functioning between early April and mid-June, and an increase in episodes of incontinence.
The report attributes the decline in wellbeing of residents to increased isolation, mainly from the inability of family members to visit because of measures to control the spread of COVID.
“Family members are often sort of an informal workforce in the long-term care setting,” Rowan said. “The extra care they provide could not be sustained by formal, paid staff.”
In line with the finding, Elizabeth Stern, a retired educator and counselor from Stonington, said that she has watched her 92-year-old mother’s care and condition deteriorate since her mother’s nursing home in Mystic stopped allowing visitors in March.
“Imagine being a person in a nursing home who saw their loved one every day … and then all of a sudden, boom! They’re gone,” she said.
Stern’s mother is paralyzed and has vascular dementia. She doesn’t understand the pandemic or the restrictions.
“Every time I go to my mother’s window for a visit, she waves at me to come in,” she said.
Stern said that before the pandemic, her mother was very well cared for, she had her own certified nursing assistant, and the family was usually close at hand. Every day her mother was groomed and her room well kept.
After the shutdown, however, Stern said that her mom’s condition changed. Her clothes were dirty, her nails grew long and she developed a urinary tract infection.
Stern said that for the last eight months she has told her mother that she can’t enter her room because she “has a bad cold.”
Despite the report and personal stories, Interim commissioner of the Department of Public Health Deidre Gifford said that she does not want legislators or the public to jump to conclusions about the causes of residents’ increasing depression.
“I do want to hesitate that we draw direct lines from policy to these observations,” said Gifford at the Monday meeting. “I don’t want to say we know for sure that it was caused by a visitation policy. It could be from changes in staffing or PPE wearing or many other factors.”
Nevertheless, the Department of Public Health is helping nursing homes to revise policies and allow for in-person visits in an effort to limit the consequences of continued isolation.
The risks of social isolation
Social isolation and loneliness among the elderly is not new. In fact, Dr. Kristina Zdanys, associate professor of psychiatry and director of the Geriatric Mental Health Clinic at UConn Health, said that social isolation among the elderly is its own epidemic, one that can decrease life expectancy by 15 years.
But Zdanys said that this isolation has been significantly exacerbated by the pandemic, and has increased anxiety and depression among elderly individuals.
Dr. Neha Jain, assistant professor of psychology at UConn and a colleague of Zdanys at UConn Health, said that elderly patients have really been harmed twice in the pandemic — having to grapple both with the fear of contracting COVID, and a loss of human contact.
Both doctors advocated the use of technology to keep in touch with relatives, as well as a creative approach to social activities — bingo games over the intercom, for example, or giving residents robotic animals to hold, or organizing “drive-bys” in cars.
The Mathematica report made several suggestions to nursing home facilities, including developing individualized care plans tailored to residents’ needs, developing plans to address isolation and loneliness and creating a clear framework for reopening the facilities to visitation. .
Last week, in response to new guidelines announced by the federal Center for Medicare and Medicaid, Gov. Ned Lamont rolled back previous restrictions on in-person visits to nursing homes.
But Stern, who believes that restrictions on visitation need to change further, particularly for essential caregivers, has recently begun working with a group of nine other women, all with relatives in nursing homes, to advocate for the right of nursing home residents to “quality of life, visitation, dignity, family,” as outlined in the Nursing Home Reform Act of 1987.
Stern said she is currently allowed one 30-minute visit each week. The first two visits, on May 26 and June 9, were outside — Stern on a sidewalk outside and her mom on a gated patio — they remained six feet apart and wore masks.
“She couldn’t hear me, I couldn’t hear her. It was ridiculous,” she said.
Later, their visits were moved so that her mother was seated in an indoor dining room and Stern sat outside separated by a window. They spoke to one another by cell phone.
Stern agrees that PPE, masks and COVID testing are necessary, but she said that physical touch is also critical for residents like her mother. If she could, Stern said, she would hold her mother’s hand, clean her fingernails and brush her teeth.
Zdanys said that not being able to visit elderly residents also takes its toll on their families.
“I think there’s tremendous feelings of guilt and helplessness in adult children and other family members,” she said. “There’s not much that they can do.”
Stern said there are “no words” to describe how the separation has affected her.
“If my mother died on March 7, I would have had no regrets,” she said. “Now? That the last eight months of her life have been so sad … she has been robbed of her family, and I have been robbed of her.”
According to Mairead Painter, the state’s Ombudsman for Long-term Care, programming changes at nursing facilities have also compounded social isolation.
“Residents are lacking the social, emotional support from recreation aids and social workers they normally get,” said Painter. “They need to do more ‘one on one’ and small groups than they had historically done. So there is a need for staffing across the board to be increased.”
The risks of indoor visitation
Since March, the state and nursing providers have worked to implement policies to prevent visitors from entering facilities, require staff to wear protective equipment, mandate routine testing of all residents and staff, and require cohorting of COVID-19 positive patients. Each new policy was intended to help prevent the elderly from contracting the virus.
Now, the state and nursing homes are attempting to peel back those same policies — not without risk — but in an effort to prevent unintended consequences that may harm the physical and mental health of residents.
In its report, Mathematica recommended that like Arizona and Minnesota, Connecticut should adopt a framework for reopening.
Much as there are testing requirements for travelers, Rowan said that “some testing guidance should be issued for visitors to long-term care facilities.” But she also warned that this framework should not serve as a one-size-fits-all approach.
“Families need objective information about why a facility can’t do indoor visitation. The guidance needs to be based on clear and objective criteria,” Rowan said.
In other words, just because one region experiences a spike in COVID cases and requires limits on indoor visits, does not necessarily mean that another nursing home in a different region must be closed to visitors.
“We heard in our focus groups that people are having different experiences based on their location and the policies should reflect that,” Rowan said.
On October 2, the Department of Public Health sent a memo requiring weekly testing for staff in nursing homes in New London County in response to a growing number of cases in the region. Elsewhere in the state, for facilities without positive COVID-19 tests for 14 days in a row, only monthly testing is required:
“DPH is requiring for New London County: Test all staff (who have not tested positive in the past 90 days) on a weekly basis. This is to continue until further notice.”
Although COVID is currently spreading at a greater rate in New London County than in the rest of the state, Gifford said that the spread had not reached a level where the Centers for Medicaid and Medicare Services would require weekly testing. Gifford explained that the state was asking nursing facilities to test weekly nonetheless.
“CMS guidance does recommend moving from monthly to weekly to twice a week testing depending on community spread,” Gifford said. “Even in New London county where there has been an increase we don’t approach the CMS threshold for twice-weekly testing … Last week our team reached out to all the nursing homes in New London county and asked all of them to move to weekly testing anyway.”
Despite relatively low rates of infection and efforts to better allow in-person visits, the memo suggests additional efforts by the state to prevent the virus from spreading and the potential second wave.
“The increased testing of staff and new testing for visitors in New London County underscores the inherent and increased risks of indoor visits in areas where community spread is on the rise, even as we support and understand the needs to move in that direction now,” said Matt Barrett, the president and chief executive officer of the Connecticut Association of Healthcare Facilities.