PHILADELPHIA — For the first six months of the pandemic, Kim Boddy could see her mother only through a window.
Marguerite Forbes, who has had Alzheimer’s disease for 10 years, spent most of those months sitting in her room at a nursing home. Boddy was “beside herself” with worry over her mother’s condition and the time they were losing.
After September, there were visits — separated by six feet and plexiglass — every couple months. Forbes, who is now 90, just found them confusing.
Once the two were vaccinated, Boddy could see her mother more often and assess the damage that nearly a year of inactivity and isolation had added to the ravages of old age and dementia. Forbes, who had by then moved to the nursing home at Rydal Park, a Jenkintown retirement community, had stopped walking. She wasn’t communicating well before, but her language had deteriorated. Her hands shook. Forbes fed herself before, but had started letting others feed her. Worse, when Boddy saw her, “she was just blank.” There was no sign of recognition.
For about a month starting in late March, Boddy, who lives in Montgomeryville, was able to visit every day. She fed her mother. She saw the older woman tap her foot to music and sing. They could touch, a connection that now transcends words. Boddy is a realist about what time and the coronavirus have done, but sometimes she sensed a recognition in her mother’s eyes.
Their visits are on pause now because two residents and a staff member tested positive. Boddy worries that her mother’s minor gains will be lost. “I’m hoping she won’t forget me again before I’m able to see her in person,” she said.
As vaccination has allowed nursing homes to open up a little, thousands of family members are seeing older loved ones with a disturbing clarity not possible during FaceTime calls and window visits. Even under the best of circumstances, the oldest seniors tend to decline over a year. But experts on dementia and aging say there is little doubt that isolation and loneliness steepened the slope for many. The pandemic was especially hard for nursing home residents with dementia, they said, but even some elders who live alone in their longtime homes suffered from lack of social contact and oversight.
The agony of the lockdown is now yielding to a transition that also feels hard. Caregivers such as Boddy are grappling with physical, cognitive, emotional and behavioral changes in their loved ones. One of the next pandemic frontiers will be figuring out how much of the last year’s damage can be undone.
“We are concerned that it will take some time to recover from the double whammy of the direct effects of the virus as well as the indirect effects,” said Sarah Lock, AARP’s senior vice president for policy and brain health.
“The real question is how much of [the damage] is reversible, and we don’t really know the answer to that yet,” said Karl Steinberg, a San Diego geriatrician who is president of AMDA-the Society for Post‑Acute and Long‑Term Care.
Depression, anxiety, and failure to thrive
It’s clear, he said, that the isolation of the pandemic made things worse for some residents of long-term care. “There’s just no doubt that, for a lot of residents, the inability to see their family in person was just devastating,” he said.
He estimates that at least a quarter of residents suffered extra decline because of loneliness and lack of social activities. Many had “failure to thrive,” which manifests in weight loss and depressed appetite. Depression, anxiety and crying jags also increased.
Aging and dementia experts said the triggers for decline went beyond not having family visits. Residents were also often told to stay in their rooms, so they exercised less. Activities stopped. Dining rooms closed. Staff was exhausted and frightened. Lack of stimulation could worsen brain functioning, but so could depression and anxiety.
Seniors who live in their own homes may not have faced all those problems, but they also suffered from lack of outside connection. Pamela Cacchione, a gerontological nursing expert at Penn Nursing, said she saw problems in her own 88-year-old parents, who live in Maryland. Around Easter of last year, she started feeling uneasy during phone calls with them. “I needed to put my eyeballs on them,” she said. When she arrived, both were dehydrated. Her father’s heart rate and blood pressure were too low. He had mixed up his medications. The problems could easily have gotten far worse if she had not visited or had the knowledge to hear warning signs.
Family caregivers of long-term care residents said they have seen mood changes, weight loss and increased frailty.
Ross and Kay Calvert, both 74, were living independently at Maris Grove Senior Living Community in Glen Mills before the pandemic. Ross Calvert doubts that most of their neighbors knew then that Kay, a “social butterfly” who thrived on community connections, had been diagnosed with Alzheimer’s in 2008.
The pandemic, though, caused what he called a “precipitous corkscrewing right into hell.” Her only social contact was with him and Charlie, a neighbor’s dog they walked together. Her behavior worsened and kept Ross Calvert from sleeping. She started wandering. “I should just die,” she would say.
She moved to the community’s memory unit. The behavior got worse, and she was admitted to a psychiatric unit for a while. Her husband tried again to live with her but gave up after 10 days. “I just thought that love would conquer all or something stupid like that, but it didn’t,” he said. He has “no doubt” that she would be better without the lockdown.
Carolyn Michener couldn’t see her 91-year-old mother, who has dementia, at Elm Terrace Gardens in Lansdale for 200 days last year. Shirley McGuigan couldn’t handle video technology and just seemed “flat,” Michener said. She wasn’t eating or drinking enough. McGuigan, who walked before the pandemic, fell in October and now uses a wheelchair. She also had a mild case of COVID-19 in December. Things got so bad in January that McGuigan went on hospice care. Michener sees improvement now, but said her mother seems weaker and talks less.
Alan Cohen, a pediatrician at Children’s Hospital of Philadelphia, has also seen decline in his wife, Michele Langer, 72, a retired lawyer who lives in the memory unit at Atria Center City. “It was much more difficult to have anything that approaches a conversation,” he said. “It wasn’t as if that had been easy before.”
He’s not sure how much to blame the lockdown. He and the family had trouble seeing her, but she was not confined to her room and had a private caregiver during the day. Activities continued in the memory unit, as did communal dining, a decision he called “incredibly wise.”
“This is a miserable disease that does progress,” he said, “and it’s so difficult under any circumstances to tease out what makes it worse at any given time.”
Hope for some
Steinberg said he saw patients who declined during the first few months, then plateaued. He’s now seeing some improve. “It just seems like those that have survived are probably going to be OK,” he said.
He thinks what residents need most is human contact. “That’ll be the biggest part of the healing process,” he said.
William Mansbach, a geriatric neuropsychologist who is CEO and president of CounterPoint Health Services in Simpsonville, Md., said some people might be overwhelmed, though, by a flood of attention after months of quiet. He likens it to feeding someone who hasn’t eaten for a long time. “You wouldn’t give them 10 chocolate bars, would you?” he asked. Some people may need to ease into activities slowly. When they do, he recommended family visits, eating with others, and activities that trigger old memories.
Like others, he said that people with moderate to severe dementia may not spring back. “Those changes could be permanent,” he said.
Although some caregivers are able to see loved ones in person daily now, others are allowed to visit only a couple times a month or not at all, if staff or residents have recently tested positive.
Lock suggested helping family members get out of their rooms and move as much as possible. Going outside in the spring is a mood booster. If you can’t see your family members often, give them something to look forward to and remind them when you’ll return.
You can try brain games and the like, but what’s probably most important, Lock said, is that “you are simply there and the person understands that you are there and you care about them.”
Felicia Greenfield, a social worker who is executive director of the Penn Memory Center, said caregivers also need to take care of themselves. The extra worry and isolation have been hard on them, too, and their feelings can affect loved ones with dementia. She sees more caregivers hiring extra help now.
Greenfield cautions people to be realistic. “There’s no harm in trying, but a year is a long time,” she said. The general things that help people with dementia cope are physical engagement, social connection, cognitive stimulation, good diet, and exercise. “Those are the recommendations always,” she said.
People who are weaker may benefit from physical and occupational therapy and better nutrition, Cacchione said. Families can bring in food the resident enjoys and talk with nursing home leaders about how they plan to help. “It takes a lot of TLC and patience,” she said.
Dawn Mechanic-Hamilton, director of neuropsychological services and cognitive fitness programs at Penn Memory Center, says establishing routines, which many abandoned during the pandemic, is crucial for older adults with dementia. She suggests setting achievable goals, such as getting outside once a week. Physical exercise, she said, is the most important activity. Returning to 2019 life may not make sense. People may enjoy different things now.
Rebecca Cordner, of Oreland, hopes that her 88-year-old mother, who lives at Artman Lutheran Home in Ambler, can get better. Kathie Cordner, who has stroke damage and vascular dementia, became depressed and “dilapidated” during the lockdown. She lost 25 pounds. The isolation, Rebecca Cordner said, “is accelerating aging.”
She began seeing her mother again in October as a compassionate caregiver. She asks her mother to read aloud and gives her a vitamin D supplement. “I give her peace and comfort and joy,” she said. She sees small improvements. At her mother’s age, she said, “it takes so much time to get over a change.” She was recently hospitalized for an infection and is now back at Artman in quarantine.
Kim Boddy has “no expectation” that her mother will return to her pre-pandemic self. Nor does Cohen have high hopes for his wife. But he does notice that she is “more comfortable” when he or their daughter visits. She is lucky that the staff adores her and treats her with compassion. What people such as her need now, he said, is for the people who care about them to “show that love and compassion more than ever before.”