With winter approaching and pandemic fatigue causing less adherence to prevention guidance, health authorities are looking to the future with worry. The Institute for Health Metrics and Evaluation at the University of Washington projects around 400,000 Americans dying before the end of February due to Covid-19. Such dismal numbers make the probability of future lockdowns and shelter-in-places likely, including more long-term care lockdowns.
These statistics are bad news for nursing homes and assisted-living facilities, which were the hardest hit in the first wave of the pandemic. Many care facilities have just started allowing visitations, and others never left lockdown. Another wave of Covid would undoubtedly cause more long-term care lockdowns for months to come, and each time a care facility closes their doors to visitors for the interest of pandemic safety, the mental health of its residents is sacrificed and their quality of life deteriorates.
Aging can be lonely, particularly for seniors living in care facilities. Severe loneliness afflicts 22-44% of those living in care homes, which is double the rate of loneliness experienced by seniors living in community homes. 35% of long-term care residents experience major depression or clinically significant depressive symptoms. With mental health so deeply interconnected with quality of life, care facilities certainly understand the importance of maintaining high morale and strong social networks. However, keeping their residents alive has always been a higher priority.
The pandemic has been devastating care facilities. Eight of ten Covid-19 deaths in the U.S. have been with adults over the age of 65, and 40% of the deaths have occurred in nursing homes. At the height of the pandemic, care facilities imposed strict new rules to limit their clients’ interaction. Family and friends’ visitations were curtailed. Outside volunteers were not allowed in. Excursions were stopped, as well as communal events like bingo games and communal dining. Residents were isolated from the outside. The trade-off for safety was even greater social isolation and loneliness.
It has been difficult for loved ones to watch from the sidelines as their parents’, family’s, and friends’ mental health deteriorate.
Tamar K. is a caregiver whose parents are in an assisted-living facility in New Hampshire. Whereas normally she was actively involved in her parents’ lives and visiting often, she wasn’t able to physically see her parents for three months. Her mother is deaf and not really able to do email. Her father doesn’t have a computer with video and neither of them have smartphones. She had almost zero communication with her mother for that time.
“Nobody knows my parents as well as me. Nobody knows their baseline of how healthy they were six months ago and a year ago other than me…. My mom is 93. You wouldn’t know what her function was before, which was really good. But because of the isolation, the loneliness, the quarantining, the not able to leave your apartment, the not able to see friends and family, not able to talk on the phone with people, it makes everybody’s quality of life go down so fast and their hope gets taken away, their energy gets taken away.”
Tamar’s mother wasn’t just isolated from Tamar; at times she was also isolated from her own husband. When Tamar’s mother broke her hip, she was not allowed to see her husband for seven weeks even though the hospital was in the adjoining building. It was the longest stretch of time for them to be apart since they were married.
Social isolation is hard for people of all ages to bear. However, for most Americans if 2020 becomes a lost year, we won’t fall into despair. We rationalize lockdowns by imagining the future years in which we will once again enjoy freedom of movement and social interaction. Residents of care facilities don’t have the luxury to think this way. They are in care facilities because of serious chronic health problems that cannot be cared for at home. Their health is often deteriorating. They don’t have a brighter future to look forward to. The average length of stay in a long-term facility is two years, and 44% of long-term care patients need it for less than a year. The end of their stay often comes with their death. If one year is spent in isolation, due to Covid or not, many will leave their social isolation in a coffin.
Care facilities are accountable for their residents’ wellbeing. When care facilities isolate their clients, they are attempting to protect their residents from the virus. Paradoxically, that isolation itself may be hastening their deaths. Social isolation is associated with a 50% higher risk of having dementia and around a 30% increased risk of heart disease and strokes. A meta-analytical review of the scientific literature found that social isolation and loneliness increased the risk of early mortality by 29% and 26% respectively.
The correlation between social isolation in dementia is particularly worrisome. Protective measures against the pandemic create more isolation, which exacerbates dementia. Those with dementia often forget why they are being isolated, which brings more loneliness and anxiety. And for their children, there are always legitimate fears that after months of isolation, an elderly parent with dementia will have reached a level of not recognizing their family.
The increased feeling of social isolation is only one of the problems created by care facilities during their attempts to control the spread of the virus.
Heather P. is a recreational therapist at a long-term care facility for veterans. Heather explained that being in a long-term facility was already a struggle. Many residents didn’t have family or friends to see them, and the social interactions were through staff and with each other. Loneliness was common. But she also saw the patients finding it difficult to adjust to losing their freedom.
“You go into these places and you have nurses and doctors making these suggestions and these decisions for you and how your life’s going to be. You have a dietitian telling you what you can eat and what you can’t eat. That’s something that’s a really hard adjustment to begin with. And you add on that there’s this worldwide pandemic going on. That loss of freedom is even worse now because you can’t go outside. You can’t go on your trips. The volunteers that came in to see you aren’t coming in to see you. It’s a loss, but it’s tenfold.”
At Heather’s facility, there was a Covid outbreak. Nearly half of her unit had symptoms or had tested positive for the virus. During that time, each patient was restricted to their rooms, which was even more of a loss of freedom than before. Her patients were veterans whose life experiences gave them a lot of anxiety.
“They’re dealing with a lot of past demons. But I found that a lot of them were depressed. They felt more isolated, obviously, because they were and a lot of them started acting out with being verbally aggressive, refusing to take their medications. You could see how it was starting to really affect them that way.”
Nobody passed away due to Covid at Heather’s unit. However, she did say that since March she had six or seven patients pass away. “It’s almost like that change in our regular life affected them to the point where they just kind of gave up and let their physical ailments take over. It’s been hard,” she said.
There’s a trade-off between pandemic safety and mental health. Allowing residents to interact with their families or with their own community increases the risk of an outbreak. However, not permitting residents to participate in their normal activities may give residents the impression that they are in a jail. Not permitting visitors rips residents from their main emotional support during the last years or months of their lives.
There is no easy answer. In the beginning of the pandemic, everyone thought that the U.S. would be able to get the pandemic in control within a couple of months. Now, it may be a couple of years. Solutions that incorporated strict social isolation made sense for a couple of months, but if they are extended for a couple of years, they no longer seem ethical.
Tamar K. discussed her feelings on this. “I want them to be safe. I’m glad they shut everything down and kept us out. They kept them [my parents] alive and have done the best they can and I think they are wonderful. It’s also completely heartbreaking. And I feel totally helpless.”
For the near future, Covid-19 is here to stay. Our seniors’ quality of life has already been deeply impacted by the coronavirus. Personal hygiene and following Covid-19 prevention guidelines are important for their physical safety. At the same time, mental health is intricately interconnected with their physical health and their quality of life. It is a delicate balance, which is being lost. Care facilities and families need to find better ways to keep seniors in care facilities from falling to loneliness and depression.
There are ways for family and caregivers to help.
In their editorial published in the Journal of the American Medical Directors Association, “Loneliness and Isolation in Long-term Care and the COVID-19 Pandemic”, Joyce Simard and Ladislav Volicer detailed many useful ideas for caregivers to help improve seniors’ mental health. Families can be asked to call up and say good morning and good night. They can come to the window and sing. Personal computers and iPads can be bought for residents. All staff wear name tags, to facilitate connections. Families can send letters and cards with pictures that trigger fond memories. Realistic dolls or animal toys may comfort some seniors with dementia. Staff can ask residents to help sort cards and then thank the residents.
Of course, we can all help our seniors by wearing masks and reminding our community to wear masks. By reducing the spread of the virus in our communities, we will keep our assisted-living and long-term care facilities open for visitors. These are our parents and our grandparents, and it may be us in the future. 70% of those aged 65 and over will need some type of long-term care service during their lives. Let’s show some compassion.
Learn more about mental health in the pandemic with the video “You are not alone“.