Nursing homes’ continuing crisis inflicts big toll on residents with dementia

dementiadiagram-300x204Even as news organizations reported that the coronavirus pandemic has taken a grievous toll on seniors institutionalized with dementia, a presidential panel on nursing home care split over common sense but limp recommendations on how the nation might reduce Covid-19’s savaging of the old, sick, and injured in long-term care facilities.

The unsurprising, 180-plus pages of recommendations from the Coronavirus Commission on Safety and Quality in Nursing Homes to the Trump Administration and specifically its long-term care facility watchdog Centers for Medicaid and Medicare Services (CMS) included calls for: “More money for testing, for personal protective equipment (PPE), for registered nurses, for infection control training and staff salary increases,” the Washington Post reported.

Seema Verma, the CMS chief who has led a calamitous federal response in long-term care that has left at least 77,000 vulnerable residents dead — 40% of all the coronavirus fatalities in the nation — and not quite a half million infected, tried to spin the commission’s findings.

She asserted they were a “vindication” of CMS policies and actions, including its tardy action to close off facilities, then to pull back on inspections, and largely leaving residents, families, and facilities on their own and subject to whatever safeguards — or lack of them — that profit-minded owners and operators could muster.

The federal actions on long-term care clearly did not sit well with the commission members, with McKnight’s, a trade media outlet reporting of the invited experts:

“More than half (13) endorsed the full report, with 11 objecting to at least one recommendation and member Eric Carlson, directing attorney of the National Senior Citizens Law Center, not endorsing the report at all.”

Carlson told the Washington Post the recommendations were “just aspirational if anything. He scoffed as he quoted from the report: ‘Mobilize resources.’ Yeah, whatever. ‘Urge nurses.’ You can urge nurses all you want. It’s the facilities’ responsibility to provide quality of care.”

Mike Dark, an attorney for California Advocates for Nursing Home Reform, a nonprofit watchdog group, commented to the newspaper that the commission report “does nothing to address the crucial issue of weak federal enforcement of standards intended to protect residents of nursing homes, and the blame that nursing home operators must share in creating the conditions that let Covid spread so catastrophically in these facilities.”

Panel members, joining with front-line health workers, expressed exasperation that facility owners and operators and federal officials, notably CMS, still have failed to deal with infection-control basics, including sufficient testing, tracing and isolating of the infected, and providing adequate PPE. CMS officials have asserted that $5 billion in congressionally appropriated aid, distributed haltingly by the agency, should be credited for assisting long-term care facilities. But, for example, the agency’s much promoted plan to provide testing equipment to thousands of homes nationwide fast proved to be more hype than help. It is still a good thing that the agency is requiring nursing home staff to be tested.

And with the elderly falling prey to the novel coronavirus at startling rates, states and owners and operators are talking about but mostly keeping shut still nursing homes coast to coast.

Residents with dementia suffer greatly

This has only inflicted further health harms and deaths on lonely, isolated, and already enfeebled elderly residents, notably those afflicted with dementia and its most common form — Alzheimer’s. The Washington Post, separately, and Politico both reported that thousands of elderly residents have died in nursing homes of what death certificates will record as effects of dementia and Alzheimer’s, though experts and loved ones blame the coronavirus.

The Washington Post said tens of thousands of dementia deaths have occurred in long-term care facilities in the months since the pandemic broke out, but a significant slice of those likely resulted from debilitations directly tied to Covid-19 and nursing home lockdowns:

“America has counted tens of thousands of excess deaths since the pandemic began. These are deaths not recorded as due to the coronavirus and occur from causes such as hypertension or sepsis. But they are occurring at much higher levels than in the past. Many of the deaths are likely undiagnosed cases of coronavirus, experts say, while others are likely due to indirect effects from the pandemic — hospitals being overrun, or care being delayed. Among the sources of excess deaths, dementia has produced by far the most — more than the next two categories, diabetes, and heart disease, combined. For one man in Indianapolis, the rapid deterioration of his dementia made it harder to swallow. Food that went down the wrong way led to a lung infection and eventually death, his daughter said. For a woman in Boston, her body — no longer able to move — became so atrophied and frail that a slight fall sent her into a death spiral of hospitalizations, her doctor said. Other cases have been more subtle. In isolation, many are suddenly struggling with severe depression. ‘We have clients who have lost almost 30 pounds,’ said Sharon O’Connor, who runs a program for dementia patients at Iona Senior Services, a D.C. nonprofit. ‘Some just don’t have reason to get up anymore, so they stay in bed all day. Others sit by themselves in a dark room.’”

Reporter William Wan also noted this:

“Overlooked amid America’s war against the coronavirus is this reality: People with dementia are dying not just from the virus but from the very strategy of isolation that’s supposed to protect them. In recent months, doctors have reported increased falls, pulmonary infections, depression, and sudden frailty in patients who had been stable for years. Social and mental stimulation are among the few tools that can slow the march of dementia. Yet even as U.S. leaders have rushed to reopen universities, bowling alleys and malls, nursing homes say they continue begging in vain for sufficient testingprotective equipment and help.”

The Washington Post worked with experts to develop its estimate that 13,000 “excess” dementia deaths should more properly have been attributed as coronavirus casualties, while Politico puts the figure at almost double that — 26,000 excess deaths due to dementia and Alzheimer’s, based on death certificates.

A powerful point pushes through from the commission findings, as well as the news articles on the coronavirus’ harms to residents with dementia and Alzheimer’s: nursing homes and other long-term care facilities have become reliant on the care and attention provided by friends and families, even as they get charged big sums, an average of $90,000-plus annually for a private room for a loved one.

Jason Karlawish, an Alzheimer’s expert at the University of Pennsylvania, told Wan:

“Families fill in a lot of gaps at nursing homes. They do much of the feeding and bathing. They advocate and communicate. If you think of Alzheimer’s as a disability, family members are almost like a cognitive wheelchair for patients who have lost part of their mind. They’re essential.”

Verma, who earlier had cozied up with owners and operators and told them that her agency was all in, in supporting them in tough times, has turned less from “carrots” and more toward “sticks,” with CMS issuing warnings to nursing homes to facilitate visits by residents’ friends and families — or face penalties, including citations and fines.

Verma has penned an Op-Ed for a Florida newspaper — geez, she can generate media opportunities that heighten her public profile without taxpayers throwing money out the window to do so — describing how appropriate safeguards, including distancing and masks and allowing contacts outdoors, could restore important and desperately needed human relationships for the elderly, sick, and injured in institutions.

Let’s not forget that, even as much as CMS and Verma jaw about nursing home lockdowns, states also have huge say in this issue. As with other aspects of an overall shambolic federal response to the pandemic, the reopening of long-term care facilities has become a state-by-state matter and a jumble.

It is fascinating to see how ready the industry and its overseers want others, notably their paying customers, to step up to fill gaps caused by weak staffing and penurious pay by owners and operators to under trained, over worked, and stressed out health aides. Let’s not forget that most of these folks provide the bulk of care in long-term facilities and they often must work at several institutions to make ends meet  — even if that means that due to a lack of testing and a dearth of PPE, combined with poor infection control practices, they may be worsening coronavirus cases.

In my practice, I see not only the harms that patients suffer while seeking medical services, but also their damages inflicted on them and their loved ones by negligence and abuse at nursing homes and other long-term care facilities.

The coronavirus has laid bare the major work this country needs to undertake to ensure that profit-hungry owners and operators of long-term facilities provide safe, effective, appropriate, affordable, and, yes, affirming care. A number of groups recently prodded Senate Majority Leader Mitch McConnell about Republicans’ wrong-headed campaign to give nursing homes and other similar facilities a gold-plated pass from legal liabilities for negligent and abusive actions during the pandemic. (A tip of the hat to the Center for Justice and Democracy for helping to win attention for a pointed letter on this issue to McConnell).

As a colleague of mine observed in a recent newsletter I wrote on whether residents and their loved ones might need to seek recourses in the civil justice system, nursing homes and long-term care facilities confront many challenges. Too many of them reduce to money and commitment, or as my colleague put it, we are past the time when we can look at nursing homes as places where people to go to die. Instead, they must be true homes where the old, sick, and injured can live safely and well. Our nation grows grayer by the moment, with dementia and Alzheimer’s cases expected to spike and create even more major issues in the days ahead. Will the pandemic put us in a worse or better place soon in how we care for our must vulnerable?

Illustration credit: Alzheimer’s Association
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