I left the nursing home nearly six years ago, but I worry about my friends who still work there, about the residents, about their families. I worry with good reason. At the time of writing, at least 29,100 people living or working in long-term care in the U.S. have died from COVID-19, but the number is undoubtedly higher. A staggering one-third of coronavirus deaths across the United States are linked to nursing homes. New Jersey — the state where I served for seven years as a nursing home chaplain — reports that nearly 40% of coronavirus-related deaths are linked to nursing facilities.
The latest CDC guidance states that, given their congregate nature and the resident population served — older adults often with underlying chronic medical conditions — nursing home populations are at the very highest risk of being affected by COVID-19.
While certain age-related biological factors, as well as higher incidence of underlying conditions, make older people more susceptible to dying from the coronavirus, the alarming death rate of U.S. nursing home residents is not a sad inevitability. It reflects the priorities and prejudices of our larger culture in the United States, which readily views older adults as less worthy of resources and respect than other groups. It reflects policies which fail to provide sufficient services for people to remain in their own homes and communities, while simultaneously under-regulating the very institutions in which they must live. It reflects poor pay and protections for care workers.
That nursing homes have become in the last few weeks what New York's former lieutenant governor Betsy McCaughey called "death pits," reflects ageism: the systematic devaluation of old lives. I have witnessed firsthand, for many years, prejudices and policies which — to borrow a word from the title of my recent book on the subject of dementia and caregiving — "vanish" older populations and their carers from public view and public concern.
Not all old lives suffer ageism's blows equally. If the residents of 55+ communities, planned neighborhoods geared toward younger retirees, were dying at the same rate as people in nursing homes, responses would likely take on a greater sense of urgency. The ubiquity of coronavirus-related nursing home deaths reflects a particular permutation on ageism — discrimination not only against old age but also against dependency in old age, most typified by the cognitive limitations associated with dementia.
Given that nearly half of nursing home residents have a diagnosis of Alzheimer's disease or other dementias, nursing home deaths from COVID-19 are disproportionately impacting people with brain disease. Dementia is the fifth most common COVID-19 comorbidity, outranking respiratory illnesses, including chronic obstruction pulmonary disease and asthma. Many of the roughly 120 residents at Kirkland's Life Care Center, the suburban Seattle epicenter of the first U.S. outbreak, were, as the New York Times reports, "in their 80s or 90s, suffered from dementia and were there for good." To the ageism that is uncovered and exacerbated by the pandemic, add dementism — the deeply-ingrained prejudice against the deeply forgetful.
On my first day, I was given a tour of the facility. When we reached the dementia unit, my guide told me that I would probably not spend much time here. The implication was clear: these residents were so far "gone" that they weren't worthy of my time. He was merely reflecting a dominant cultural attitude that says people with dementia have disappeared from themselves, so there's no need to be fully present to them. The more time I spent with the people on the unit, the more I came to know them as complex individuals with histories, relationships, desires — not as undifferentiated "dementia sufferers" lost to their disease. I witnessed what they too often endured — treated like children, rushed past, ignored — and became convinced that the social response to dementia creates as much suffering as the disease itself.
Whether they have dementia or not, frail elders and their care partners often find themselves forgotten at the exact time when they need the most care, and the last few weeks have brought that fact into sharp relief. I have seen it happen again and again, long before the coronavirus hit America. Friends, family, and even faith communities quietly withdraw; physicians offer little support outside prescriptions; public policy neglects care needs. A third of people with dementia have reported losing friends following a diagnosis, and over a third said they have felt lonely recently, according to a recent survey by the U.K.'s Alzheimer's Society. The National Council on Aging reports that nearly half of people with dementia have experienced abuse or neglect.
The common language of our time also reflects and generates prejudice. People do not simply have brain disease; they are imagined as gone, fading away, vanishing in plain sight. While dementia raises existential questions in ways other chronic or terminal conditions do not, we seem to have placed dementia beyond the pale of personhood. So, if we've already imagined these people as disappeared — and, to some extent, have treated them as such — then it is no surprise that the disproportionate vulnerability of people in nursing homes to dying from COVID-19, has not seemed to be, at the level of state and federal government, a priority.
Indeed, the huge proportion of deaths in nursing facilities in the last few weeks, which surely could have been mitigated with proper planning, precautions and care funding, barely seems to register as a systemic injustice. The statistics from the last few weeks make clear that the residents and staff of the kinds of nursing homes I worked at have been left to fend for themselves against this virus, and have suffered greater losses than anywhere else in the community. My own state of New York — where more than 5,300 nursing home residents have died from COVID-19 — has provided unusual legal cover for the nursing home industry, shielding them from lawsuits over their failure to protect residents from infection and death from the coronavirus.
I hope that the pandemic will lead us to re-examine values and language that discount people with dementia, and to re-evaluate an American philosophy and healthcare system that requires so many older adults — frail in mind, body, or both — to live in institutions that leave them vulnerable. More than anything, I hope we embrace dementia-inclusive communities, where people are welcomed and supported within their neighborhoods, where intergenerational networks thrive, where the general public is educated about dementia and other challenges that disproportionately impact the elderly, and where compassion is valued over cognitive capacity. If that can happen, something positive and enduring will have come out of this crisis.