This weekend, the New York Times uncovered new, seemingly damaging information about nursing homes, this time unrelated to their mishandling of the Covid-19 epidemic. “Phony Diagnoses Hide High Rates of Drugging at Nursing Homes,” is a detailed investigative essay by three reporters that reveals that nursing homes regularly under-report the frequency with which they prescribe sedating, antipsychotic medications for residents with dementia. Such medications, while useful for controlling paranoia and delusions (which may afflict people with dementia), have not been shown to be more generally helpful in controlling the behavioral symptoms of dementia. They are, however, associated with a two-fold increase in mortality and other adverse effects. As a result, nursing homes have been under pressure for years to limit their use of “chemical restraints,” medications that suppress agitation--including general sedatives and antipsychotics.
The campaign against the use of anti-psychotics in dementia began with the Nursing Home Reform Act of 1987 (OBRA-8)7, legislation asserting that residents have the right to be free from physical and chemical restraints that are “not required to treat specific medical symptoms.” Then, nearly a decade ago, CMS announced a new approach, the National Partnership to Improve Dementia Care and Reduce Unnecessary Antipsychotic Use in Nursing Homes. This strategy provided for training modules for nursing home staff on how to handle residents with dementia; the strategy also involved including as a “quality indicator” the proportion of long-stay nursing home residents receiving an antipsychotic medication. In 2015, this quality indicator was added to the list of measures that comprise the overall rating of nursing homes that CMS publishes on its website, Nursing Home Compare.
The last 34 years have seen a marked decline in the use of antipsychotic medications in nursing home residents. The Nursing Home Reform Act of 1987 led to a 27 percent reduction in antipsychotic use. The introduction of psychoactive drug use as a quality indicator led to a further ten percent fall in prescribing. Today, CMS statistics assert that 15 percent of long-stay nursing home residents regularly receive antipsychotics for some problem other than Tourette’s syndrome, schizophrenia, or Huntington’s Chorea, for which antipsychotics are approved. The new report by the NY Times suggests that the correct figure is more like 21 percent, with the excess accounted for by bogus diagnoses of schizophrenia: the implication is that doctors want to control their demented patients by sedating them, but are discouraged from doing so by CMS regulations, so they get around the rules by falsely labeling their patients as schizophrenic.
The Times argues that “caring for dementia patients is time- and labor-intensive. Workers need to be trained to handle challenging behaviors like wandering and aggression. But many nursing homes are chronically understaffed and do not pay enough to retain employees, especially the nursing assistants who provide the bulk of residents’ daily care.” All true. The Times goes on to argue that nursing homes with poor staffing ratios (facilities that get a 1 or 2 star rating for the adequacy of staff: patient ratios) dole out more antipsychotic medications than those with better staffing ratios (facilities with 4 or 5 star ratings for staffing).
While this graph strongly suggests an inverse relationship between staffing and antipsychotic use, what is equally striking is that all the facilities, regardless of staffing, administer antipsychotics to upwards of 15 percent of residents, without appropriate justification. What this suggests, contrary to the NYT implication, is that nursing homes find that no amount of training and no number of staff members can consistently and reliably treat all the behavioral symptoms of dementia.
The unfortunate reality is that we know very little about how to care for people with moderate to advanced dementia who exhibit problematic behaviors. The behaviors I am referring to are not merely inconvenient to staff, such as “wandering” off the nursing unit unattended. They include aggression, paranoia, and delusions. That means hitting or spitting; it means slugging or biting the well-intentioned caregiver who sought to bathe or feed a resident. These behaviors are disturbing to persons with dementia, their caregivers and, in a nursing home setting, other residents.
The Alzheimer’s Association, the American Psychiatric Association, and others have come up with guidelines for managing these symptoms. Their recommendations advise beginning with psychosocial interventions: first tryi to determine the cause of the behavior (perhaps the person slugged the aide who tried to give him a shower because the water was too cold) and then either address the root of the problem (for example, adjusting the temperature of the shower water) or engage in distraction (taking the individual to a “quiet room” with a box of trinkets and other treasures to examine). But then comes the caveat: “Unfortunately, large population-based trials rigorously supporting the evidence of benefit for non—pharmacological therapies are presently lacking.” The evidence for these approaches is largely anecdotal and commonsensical--as is true for anti-psychotic medication.
What is the solution? The Times seems to suggest we should either penalize physician prescribers, fine nursing homes that over-prescribe, add further regulations, or all three. Another alternative is to substitute “Green Houses” for conventional nursing homes. The Green House is a model of nursing home care that seems to be successful in many domains where traditional nursing homes have failed abysmally, so there is some reason to believe it may be a good way to deal with dementia. The Green House project restricts homes to no more than 12 residents, employs a home-like focus, and cross-trains staff members to meet any and all resident needs rather than using a rigidly siloed model. Green House nursing homes may be the answer: they are associated with high rates of family satisfaction as well as a superior track record in controlling the Covid epidemic. I hope Green Houses have the solution, but I can find no published data on their ability to manage severe dementia. In fact, it’s far from clear Green Houses, which currently provide care to a total of 3000 people (out of a total nursing home population of 1.3 million), in 300 facilities (out of a total of 15,600 nursing homes nation-wide), actually care for people who have dementia and troublesome behavior. Their limited numbers, small size, and high cost (45 percent of residents pay out of pocket compared to 22 percent of residents in usual nursing homes) suggest they may be able to cherrypick their residents.
I am not advocating blanket use of psychotropic medications in nursing home residents. Nor am I endorsing mislabeling patients with psychiatric diagnoses they do not have. Antipsychotics should only be used in people with dementia in well-defined and relatively rare circumstances. Perhaps informed consent by the patient's health care proxy should be a prerequisite. But blaming nursing homes or pointing the finger at nursing home doctors or devising new regulations are not the best ways to serve people afflicted with dementia. What we need is to find better ways to alleviate the suffering of people with dementia. We should recognize that the doctors who prescribe antipsychotics are not necessarily lazy or devious, though any who are should be disciplined; many of them are simply desperate, desperate to provide relief to their patients. Medicare is poised to spend billions of dollars on aducanumab, a drug recently approved by the FDA for treatment of Alzheimer’s disease despite the paucity of evidence that it works and the abundance of evidence of its association with severe side effects. Perhaps we should instead devote resources to what is likely to be the more tractable problem, the symptomatic relief of Alzheimer’s disease and other dementias.