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 6 feet and Plexiglas — every couple of 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 a nursing home at a retirement community, had stopped walking. She wasn’t communicating well before, and 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” — no sign of recognition.
For about a month starting in late March, Boddy was able to visit every day. She fed her mother. She saw her 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 were paused again because two residents and a staff member tested positive. Boddy worries that her mother’s minor gains will be permanently lost. “I’m hoping she won’t forget me again before I’m able to see her in person,” she said.
As vaccinations have allowed nursing homes to open up, 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 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 past 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.
Lack of stimulation and connection
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 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.
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.
But the pandemic 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.
Hope, with a dose of realism
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 that people with moderate to severe dementia might 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 of 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 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.
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.
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.
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 might not make sense. People might enjoy different things now.
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.”