Dementia symptoms appear to worsen after pandemic restrictions overwrite support routines, families say

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Since March 16, Susan Mills has had a daily ritual: Every morning, she’d stand outside The Grove nursing home in Arnprior, Ont., with her face pressed up to the glass of her mother’s ground-floor window. Next to her was a paper sign, taped to the pane with the text facing inward.

It read: “Susan here at 10:30 in the morning.”

Ms. Mills placed the sign there soon after COVID-19 protocols prevented family members from entering the facility, to notify its staff of her standing daily appointments with her mother, Barbara. From this spot, she witnessed her mother fade before her very eyes.

Before the lockdown, Susan used to spend several hours a day with her mother, who has vascular dementia. She would accompany her mother in the dining room for dinner, and they’d watch the news together and catch up on what was happening with Barbara’s five other children. When visitors were banned in March, her mother was still able to hold a phone to her ear and chat from the other side of the window. But by early September, the 84-year-old barely had the strength to lift her hands. Her side of the conversation had dwindled to one-word responses.

Last week, The Grove and other long-term care homes in Ontario officially reopened the doors to caregivers, which means family members, friends and other non-staff members who provide direct care to residents have been able to return without time restrictions. Many are discovering an unfortunate consequence of the safety protocols that were put in place to protect older adults from the coronavirus: A lack of social interaction has caused emotional suffering and deprived them of physical and mental stimulation, and in the case of many people with dementia, accelerated cognitive decline.

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“When we implemented all of the policies to try and prevent the spread of COVID-19, we didn’t think about … how is this going to impact the mental and emotional well-being of people who are living with dementia?” said Saskia Sivananthan, chief science officer at the Alzheimer Society of Canada.

Susan Mills sees the consequences firsthand. Barbara no longer recognizes some of her children in the photographs Susan shows her, and now needs help feeding herself.

“The deterioration is very real,” Susan said, noting that her mother will never regain much of the strength and cognitive function she has lost over the past six months.

Studies conducted prior to the pandemic have shown chronic loneliness and social isolation are serious health hazards. Lonely people are not only more likely to develop a range of illnesses, from cardiovascular disease and cancer to depression and dementia, they tend to feel worse when they fall ill than those who are not lonely. In a review paper, published in the September issue of the journal Trends in Cognitive Sciences, McGill University researcher Danilo Bzdok and co-author Robin Dunbar cite an analysis of 70 studies that found social isolation, living alone and feeling lonely increased the chances of dying among older adults by about 30 per cent.

It may seem strange to identify loneliness, an abstract feeling, as a cause of physical harm – studies suggesting that one causes the other are largely conducted on lab animals, not humans – yet there’s reason to believe loneliness has “a whole array of bodily consequences,” said Dr. Bzdok, an associate professor of biomedical engineering in the faculty of medicine. Some of the strongest evidence points to its detrimental effects on the immune system, he said. Wounds, for instance, take longer to heal. Bacterial and viral infections are harder to recover from. Certain immune cells, called natural killer cells, are “just less effective in people who feel lonely, and so it will take them longer … to get on top of an infection,” he explained.

The mechanisms by which loneliness leads to these physical effects are still not well understood, but scientists are trying to piece together the puzzle by drawing on various links. Lonely people, for example, tend to sleep less well than the non-lonely, and poor sleep is associated with having a worse immune response and poorer memory consolidation, Dr. Bzdok said.

Interacting with others is an important source of mental stimulation, he added. Consider all the work your brain does to help you navigate various social encounters. It keeps track of who’s who, how you know them and how the various individuals in your networks are related to one another (is that Linda from accounting, or Lisa from HR?). It processes social cues (did that person smile or smirk?). It keeps a record of what is socially acceptable and how others expect you to behave and it keeps track of what’s happening in other people’s lives.

For most people, “it’s just the most complicated thing that they do on an everyday basis,” Dr. Bzdok said, noting without social interaction, they lack this mental exercise.

He suggested this may be one reason why people develop signs of Alzheimer’s disease several years earlier, on average, if they are chronically lonely and not well integrated in society.

Interacting with others is also a source of intrinsic reward tied to happiness, he said. So it’s hardly surprising that a lack of interaction can negatively affect one’s mood.

Another potential and oft-cited mechanism is that when people are lonely, they have increased stress and elevated levels of the hormone cortisol, which may be damaging to the hippocampus, a part of the brain involved in forming memories, said Linda Mah, a geriatric psychiatrist and senior scientist at Baycrest’s Rotman Research Institute in Toronto. Cortisol, too, may affect the immune system, she added.

Depression could also be another piece of the puzzle. People who are lonely may become depressed, and people with depression are as much as twice as likely to develop dementia, said Dr. Mah, who is currently studying the effects of the pandemic and physical distancing on the mental health of older adults.

Susan Mills worked hard to keep her mother engaged and abreast of family news. She constantly jogged her memory with stories and photographs, and took her on outings and helped her participate in activities at The Grove. All of this emotional support and cognitive stimulation was essential to “bringing her life, making her life relevant to her,” Susan said.

Without her at her side, Barbara has spent the past six months mostly staring at the walls and sleeping. She has watched countless hours of television, seated in front of whatever program the staff put on at the nurses' station or on the television out in the lobby. Susan said the staff members brought her to occasional activities at the nursing home, though she didn’t know what kind and suspected her mother no longer participated much anyway. The guilt Susan feels about this is overwhelming.

“That’s not really a life,” she said.

Carol Morissette has witnessed a similar decline in her husband Mike, 69, who has vascular dementia. Prior to the pandemic, Mr. Morissette led an active life outside their Ottawa home. He participated in adult day programs provided by the non-profit organization Carefor that were designed for individuals with dementia to provide mental stimulation, physical exercise and camaraderie. He went to the gym, enjoyed regular breakfasts and lunches with friends and ran errands at the bank and the pharmacy.

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Mr. Morissette now spends much of his time doing word search puzzles, watching game shows on television and working in the garden. In the afternoons, he visits his daughter and grandchildren, with whom the couple have formed a bubble.

But since her husband is a social person, Ms. Morissette said she can tell he misses all the activity and broader social network of his prepandemic life. He is restless and more easily frustrated than ever. Physical distancing can be challenging for him since he doesn’t always remember to do so. Sometimes he puts on his mask upside down. As a result, Ms. Morissette has found he is much safer staying at home or waiting in the car while she does the couple’s grocery shopping.

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Ms. Morissette sees signs his short-term memory has worsened. He now struggles for the right words to express himself. Broccoli or green beans are now “those green things.” He mixes up the names of his seven young grandchildren, even though he loves them to pieces. He forgets the names of his neighbours.

Back when he attended day programs, she was able to get some respite and chat with her own friends.

“That’s gone. So that makes my life a little more complicated and a little bit more lonely too,” she said. “So now the days are very quiet.”

Robin Meyers, a director for the non-profit Carefor, which runs three retirement homes as well as community programs for adults with dementia, worries that there may be another epidemic on the horizon: one of depression or other illnesses caused by chronic illness and isolation.

Carefor has moved its community programs online to now offer music concerts, fitness classes and art sessions remotely, but these don’t fully replace in-person interactions. Ms. Meyers has heard from many family members that their loved ones' health is deteriorating and their dementia is progressing.

“More seniors live alone than we actually think,” Ms. Meyers added, noting they no longer have access to their regular social activities. “All that stuff stopped.”

With a second wave of COVID-19 cases expected to arrive later this fall, one of the key lessons from the past several months is the importance of taking preventive measures to protect long-term care residents from the virus while ensuring that family members are able to continue to provide support, Dr. Sivananthan said. Providing family members with personal protective equipment, doing temperature checks and screening, for example, can help allow them to be close to their loved ones without spreading the virus.

A Canadian military report in May revealed horrific conditions at five of Ontario’s long-term care homes. It revealed residents were being sedated and confined to their rooms, they were left in soiled diapers and they waited up to two hours before anyone responded to their cries for help. But Dr. Sivananthan said that not all nursing homes were in those situations. Other facilities operated in ways that allowed them to prevent the spread of COVID-19 while still focusing on quality of care, she said. They made sure staff had appropriate personal protective equipment and regular working hours and that the staff-to-resident ratios were sufficient to provide the latter with good care.

“When you have those foundational pieces in place, you’re able to also ensure the quality of life for the residents so that they’re not being restricted to their rooms and they’re not isolated,” she said.

The first time Susan Mills and her mother reunited, Barbara’s blue eyes brightened upon seeing her daughter walk through the door. The dullness Susan saw in them during their window visits lifted.

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But Susan said her mother is in such poor condition now she probably does not have a lot of time left to live. The least she can do is to be there for Barbara as she reaches the end, she said, just as Barbara has always been there for her.

“I just want to make sure she is supported by love.”

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