The elderly and the immunocompromised have been the two groups most victimized by the SARS-CoV-2 virus. Of the more than 950,000 individuals who have died of COVID-19 in the US as of March 2, about 75 percent have been people aged 65 or older.
A large number of the elderly who have survived COVID have also suffered from dementia. Dementia is not a disease but a syndrome, which means that it’s a group of symptoms. People who are diagnosed with dementia have two or more associated symptoms. There are various potential causes for dementia, but it’s hard for doctors to diagnose with certainty. And since it can manifest in varying forms and degrees of severity, it sometimes isn’t diagnosed at all.
Viral infections can spread to the brain and alter its function. When SARS-CoV-2 or other viruses infect the brain, it can result in encephalopathy, an umbrella term for any kind of damage or disease of the brain. This phenomenon can occur in anyone, but most severely affects individuals aged 65 and older. It can be serious for elderly patients with or without dementia, but an increasing amount of scientific data suggest that COVID patients with dementia are suffering from more intense, long-term brain damage.
Unfortunately, this is what happened to my grandfather, who is 83 years old. About 10 years ago, he started exhibiting minor personality changes that were so subtle we couldn’t really figure out if he was acting unusual or just becoming quirkier with age. Then five years ago, he began a gradual mental decline. He started to lose his short-term memory, develop aphasia (an inability to recall words), and would randomly speak to me and my brothers in his native language which we didn’t speak, even though he usually spoke to us in very good English.
The last two years had been worse than the ones before, which was expected, because dementia is progressive. The greatest concern was that he would go off on odd tangents when talking or answer a question with something irrelevant. Still, at the beginning of 2022, my grandfather was able to communicate with us efficiently.
Then, in the first week of January, he tested positive for COVID. He was fully vaccinated with Moderna, but hadn’t been boosted. He had a mild fever and chills and was very weak. Within a few days, my grandma said he began to seem weaker and more withdrawn and was unable to use the bathroom on his own. When she called an ambulance, he was lying on the bathroom floor—apparently, he had decided to lay there because he was tired. He was too weak to get up on his own and my grandma wasn’t able to lift him by herself. He was brought to the hospital to ride out the infection, where he slept most of the time. When he was awake, he would barely eat or speak, and according to the medical team, was not receptive to anything going on around him. They said he was delirious. His respiratory system, which is typically affected in severe COVID cases, was fine. And despite a preexisting heart condition, his heart was unaffected. The doctors diagnosed him with encephalopathy based on his deteriorating cognitive function.
When my grandfather finally recovered from COVID, he was physically stable but extremely confused. It seemed as if the virus had accelerated his dementia. He was much worse than before he’d gotten sick, with new episodes of fatigue and mood changes. He was also having delusions, seeing people and things that weren’t there. Now in late February, he is able to walk around on his own, has an appetite, and he’s active again. But the doctors have said he has end-stage dementia. He can recognize most of his family members, but beyond that, he doesn’t know what’s going on. The person he was before all this happened is fading.
The ordeal my grandfather experienced is undoubtedly a form of long COVID, which the CDC describes as “post-COVID conditions.” This includes brain fog, defined as difficulty thinking or concentrating, which can last for weeks or months after the initial infection. It can occur in anyone who had COVID-19, whether their case was mild or severe. “It’s a vague phenomenon,” says physician and researcher Dr. Pamela Davis. “There are symptom complexes [syndromes] that occur after COVID infection. But we don’t know exactly if it’s because the virus still lingers in organ systems or if it’s an autoimmune phenomenon.”
The vagueness of long COVID lends itself to questions about the correlation between COVID and encephalopathy in dementia patients. “It’s still not certain whether [dementia patients’] vulnerability is biological due to a damaged blood brain barrier, or whether their behavior is such that they may be exposed,” Dr. Davis says. “It’s likely a combination of both.”
According to a study Dr. Davis co-authored, “COVID-19 and dementia: Analyses of risk, disparity, and outcomes from electronic health records in the US,” people with vascular dementia are at higher risk for COVID infection than those with Alzheimer’s dementia. Alzheimer’s is the most common type of dementia in older adults; according to the CDC, an estimated 6.2 million people in the US were living with the disease in 2021. Vascular dementia is caused by damaged blood vessels in the brain as a result of various heart conditions, and often coexists with other types of dementia, including Alzheimer’s.
COVID-19 tends to bind to endothelial cells, the cells that line blood vessels. This supports the idea that the biological effects of a damaged blood brain barrier in dementia patients may be to blame for their increased vulnerability. “However, it’s hard to tell whether dementia is Alzheimer’s or vascular until post-mortem examination, when cerebral blood vessels can be examined,” says Dr. Davis.
Underlying racial and socioeconomic inequities in health care reveal themselves here, as well. Dr. Davis’s study found that Black patients with dementia were more likely to be infected by COVID than white patients with dementia, and that hospitalization and mortality rates in Black COVID patients with dementia was higher than that of white patients.
Dr. Davis’s study was published in early 2021, shortly before the vaccines rolled out, and she says one of her team’s motivating factors was to inspire vaccination efforts, specifically in the elderly population. That would not only lower their risk of catching the virus, but reduce the impact of mitigation efforts, some of which are disproportionately harmful for the elderly. The standard protocol COVID patients in nursing homes is to isolate for two weeks. While this is meant to ensure the safety of the other residents of the homes, it can have severe consequences for the elderly. “Isolation is not good for people with dementia,” Dr. Davis says. It’s even worse for patients with newly developed encephalopathy. They need to be mentally stimulated and surrounded by people they know and have memories with.
According to records from December 15 of last year, about 96 percent of residents and 97 percent of staff at adult care facilities in New York were fully vaccinated. As COVID resistance has been successful on this front, it might be time to reconsider the way our systems handle recovery and quarantine among elderly patients—especially those with dementia.
When my grandfather was deemed stable enough to leave the hospital, he was brought to a nursing home to regain physical strength after being in bed for so long. By the time he had left the hospital, it had been almost two weeks since he started experiencing symptoms, but he was still testing positive. They allowed him admission to the nursing home, but required him to isolate until he had two consecutive negative tests. It was more than a week after he was admitted that he tested negative, even though he was no longer infectious. During that time, none of us were able to see him. My grandma and dad were each able to visit him once, only because they didn’t think he was going to make it.
In a bid to protect one of our nation’s most vulnerable populations, some of our actions may be hurting them. Some nursing homes require patients who have recovered from COVID to isolate for five to 10 days, even if they tested negative before arrival. Caring for an elderly patient with dementia requires a complex set of calculations. “This is a whole problem we’ve imposed on dementia patients by trying to keep them safe,” Dr. Davis says. “But at the same time, preventing exposure is also a key way to keep them safe.”
There is still a lot to learn, as well. SARS-CoV-2 is a novel disease, and it’s long-term effects are unknown. Dr. Davis and her team are applying for grants to do a five-year study, where they will follow dementia patients who have recovered from COVID and see what specific aspects of their brain function have been affected long-term.
In the meantime, the elderly remain vulnerable. My grandfather is one person who represents an entire community that is too often neglected by the American healthcare system. If, in that week and a half that he was most vulnerable in his recovery, we had been able to see and interact with him, it might’ve changed the trajectory of his progress. It might’ve somehow reversed or slowed his cognitive decline. It might not have made any difference. But we’ll never know because we couldn’t try.