“It’s a well-documented human rights violation—and yet it persists in the 16,000 or so nursing homes throughout the U.S.,” says Hannah Flamm, author of a new report, “How Nursing Homes in the United States Overmedicate People With Dementia.” The report was undertaken for Human Rights Watch, an international research and advocacy organization that just recently expanded its focus to include older adults. The abuse of antipsychotics has been well documented by medical groups for years. But Flamm served as boots on the ground, visiting more than 100 nursing homes around the country and collecting anecdotal evidence from residents, their family members, administrators, ombudsmen, and long-term care experts.

The research was instigated on the heels of an alert issued by the Center for Medicare Advocacy, a nonprofit legal organization that branded the overuse of anti-psychotics in nursing homes “a national scandal.” The Human Rights Watch study focused on six states—California, Florida, Kansas, Illinois, New York, and Texas—chosen for reportedly high proportions of residents on antipsychotic drugs in skilled nursing facilities there.

And it found the scandal shows no sign of abating. In an average week, nursing facilities around the nation administer antipsychotic drugs to more than 179,000 people who have not been diagnosed with any condition the drugs have been approved to treat. Serious medical complications are common—including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes. What’s worse, most of those drugged have Alzheimer’s or another form of dementia—and another well-documented fact is that antipsychotics nearly double the risk of death in older people with dementia.

Drugs of First Resort

Moved to act by concerns for the growing population of elderly people with dementia, the American Psychiatric Association issued a revised practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia in 2016. It states that “after eliminating or addressing underlying medical, physical, social, or environmental factors giving rise to manifestations of distress associated with dementia,” antipsychotics can be appropriate “to minimize the risk of violence, reduce patient distress, improve the patient’s quality of life, and reduce caregiver burden.”

The problem is the reality that, in nursing homes, where much of the caretaking behavior is hidden behind closed doors, many of the providers leapfrog past the requirement of taking a hard and honest look at why a person is agitated and fixate on “reducing caregiver burden.” What keeps the deadly dosing of antipsychotics coming, especially at understaffed facilities, is that it also makes the drugged residents “easier to manage”—uncomplaining, compliant, docile.

That was borne out by observations from a range of uncensored souls with reasons to know.

• From a 62-year-old nursing home resident given Seroquel, a common antipsychotic used to treat schizophrenia and bipolar disorder: “I was seeing monkeys on the wall. It knocks you out. It’s a powerful, powerful drug. I sleep all the time. I have to ask people what day it is.”
• From a social worker who formerly worked at a nursing facility: “The nursing homes don’t want behaviors. They want docile.”
• A social worker at a Texas care facility confirmed: “You have to get through incontinent care and the shower. We give meds before their showers. We just want to make sure it’s in their system when we’re showering them.”
• And from a director of nursing at a long-term care facility: “You actually see them decline when they’re on an antipsychotic. I think it’s sadder than watching someone with dementia decline.”

Uninformed Nonconsent

Another problem is that residents are often given the drugs without knowing it. Federal regulations mandate that nursing home residents have the rights to be fully informed about the treatment they receive there, and to refuse any treatment they don’t want. And the laws in many states have piled on added strictures, requiring that residents—or their family members or power of attorney agents—specifically give informed consent before being given antipsychotic medications.

But these protections are, so strong on paper, are widely ignored in practice.

• An 81-year-old resident in a Texas facility said: “Too many times I’m given too many pills. I ask them not to. When I say that, they threaten to remove me from the nursing home. They get me so I can’t think. I don’t want anything to change the person I am.”
• Admitted one long-term care pharmacist in Kentucky: “I don’t think antipsychotic drugs are presented well to the family in informed consent conversations. Because if it were, they’d all reject it. And when staff don’t inform them beforehand, then the family is not having a real choice.”
• And the daughter and power of attorney of a resident in a California nursing home said: “I had no idea, not at all, that the drugs were dangerous. I’m guessing most people have no idea.”
• And according to a long-term care ombudsman in Kansas: “It’s not explained to the family. I wanted them to explain the side effects. They weren’t going to tell the family that. The nursing home just said, ‘The resident could get aggressive.’ So the family agreed to it.”

Enforcement: Notoriously Lax

There are no shortage of laws and regulations prohibiting dispensing antipsychotics without medical diagnoses and without the informed consent of nursing home residents receiving them. But the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for ensuring that facilities comply with them, has been historically and notoriously lax in enforcement.

Under the lens of renewed public criticism, it created the National Partnership to Improve Dementia Care in Nursing Homes in 2012. The group, composed of state and federal agencies, care providers and various experts and advocacy groups, voiced the goal of reducing the use of antipsychotics. Since then, CMS has reported a decrease, along with an increase in alternative methods of treating the underlying difficult behaviors, without medication.

Some experts are skeptical about the alleged improvement, though, noting that the incidents are self-reported by the care facilities. And Human Rights Watch, in the most recent look at the problem, concluded CMS “is not using its full authority to address this issue”—and in fact, has recently limited both the regulatory standards controlling antipsychotics and the severity of financial penalties imposed on nursing homes that violate them. Tellingly, 97% of the citations given for the use of antipsychotic drugs found neither “actual harm” nor “injury” caused by them, which flies in the face of eyewitness reports. Inspectors just seem to be turning their backs on the problem.

How to Take Action

Consumer advocates recognize it will be difficult to get measures for meaningful change passed in the current political administration, and say in the years to come they may need to focus on preventing backsliding and turning to states to pass more robust informed consent laws.

Robyn Grant, director of Public Policy and Advocacy at the National Consumer Voice for Quality Long-Term Care says the biggest hope for change will come from insiders—residents, family members, and other caregivers—voicing their complaints directly to legislators and government agencies. “Legislators need to hear what consumers rather than industry and advocates have urged,” she says. “And CMS needs to hear from consumers on the receiving end of care.”

Those moved to agitate for change can find a storehouse of information on the misuse of antipsychotics in nursing homes in addition to talking points to include in advocacy letters on Consumer Voice’s campaign page.