Caring for seniors with dementia who are living in nursing homes can be a challenging endeavor. One particular area of concern is the use of antipsychotic medications in treating older adults with Alzheimer’s, and other forms of dementia, when behaviors associated with those conditions become difficult to manage.
Sometimes called “chemical straightjackets,” antipsychotics can be crucial for treating certain mental health disorders such as schizophrenia. And these powerful drugs can make an enormous difference in the quality of life of individuals who need them.
However, they’re sometimes misused, and that’s a major area of concern, says Dr. Katherine Brownlowe, a neuropsychiatrist and assistant professor of neurology and psychiatry with the Ohio State University Wexner Medical Center.
The Current State of Antipsychotic Use in Nursing Homes
Recent reports suggesting that these powerful drugs may be overused or abused in some nursing homes have many people concerned. In September 2021, a New York Times investigation revealed that at least 21% of nursing home residents, more than 225,000 people in total, are on antipsychotic drugs.
Sedative antipsychotic medications, such as Haldol (Haloperidol), can be dangerous for older people. The FDA warns that Haldol significantly increases the risk of death from heart problems, falls and infections when administered to elderly patients with dementia-related psychosis. That increased risk of death was calculated at 1.6 to 1.7 times greater, based on an analysis of 17 placebo-controlled trials.
“Over the course of a typical 10-week controlled trial, the rate of death in drug-treated patients was about 4.5%, compared to a rate of about 2.6% in the placebo group,” the FDA warning notes. For this reason, “Haldol injection is not approved for the treatment of patients with dementia-related psychosis,” but is rather intended to treat schizophrenia.
The Times investigation found that some nursing homes are adding a diagnosis of schizophrenia to a patient’s chart in order to get around this restriction. This means the use of the medication doesn’t have to be reported to Medicare, which improves the standing of the facility in various agency records and rankings. The Times reported that currently, 1 in 9 people in nursing homes have received a schizophrenia diagnosis. In the general population, the condition affects about 1 in 150 people, and it’s almost always diagnosed prior to age 40.
Certainly, the trend of overmedicating or inappropriately administering powerful antipsychotics to nursing home residents to keep them calm is concerning. But preserving the accessibility of these medications for those who truly need them is also a consideration. This all adds up to making the use of antipsychotics in nursing homes a “complicated, nuanced issue,” Brownlowe says.
[See: 8 Early Signs of Dementia.]
Why Antipsychotics Are Sometimes Used
For the 1 in 9 older Americans who develop dementia, whether that’s Alzheimer’s disease or another type of dementia, a variety of symptoms can develop. No matter which type of dementia your loved one might be dealing with, memory will be affected. But memory loss is not the only issue these neurodegenerative conditions can create.
“I think we commonly think of older folks as having memory impairment, that’s often their primary symptom. But we also see changes in people’s ability to control their impulses and their ability to make good decisions as they get older,” Brownlowe says.
Those impulsive behaviors may be heightened in certain kinds of dementia, such as frontotemporal dementia, says Lisa Skinner, a Napa, California-based behavioral expert in the field of Alzheimer’s disease and related dementias.
For example, “you may see aggressive behavior more often than not with frontotemporal dementia because of the part of that brain that’s damaged is where we house our emotions, personality and judgment. People with that dementia are sometimes very sexually interested or they’ll hit people or be prone to extreme outbursts of anger.” While these behaviors might be more common with frontotemporal dementia, “you can see it with any type of dementia,” Skinner says.
All of these symptoms, along with memory loss, confusion and an overall loss of ability to care for oneself, get worse over time and can lead to psychiatric symptoms, including delusions or hallucinations and paranoia. This can lead to angry outbursts or other behaviors that are hard to manage.
“As people’s dementia progresses, they can develop paranoia and become very suspicious,” Brownlowe explains. In some cases, people with advanced dementia may develop symptoms similar to those seen in schizophrenia — hence why some are being diagnosed with schizophrenia in order to be prescribed powerful antipsychotic medications.
Yet, “there’s no FDA-approved medication to treat these (psychiatric) symptoms,” when they’re caused by dementia, says Elizabeth Galik, professor of organizational systems and adult health at the University of Maryland School of Nursing in Baltimore.
These symptoms cause distress for the patient, as well as the caregivers, and can greatly decrease the patient’s quality of life. The COVID-19 pandemic has apparently only made this situation worse, as many nursing homes are understaffed or overwhelmed; caring for an agitated or noncompliant patient becomes very difficult when staff is already overburdened. And a review published in the journal Neurology and Therapy suggests there’s a relationship between low staffing levels and an increased reliance on antipsychotic medications — though the study also notes more research is needed.
Even though medications like Seroquel (quetiapine), Zyprexa (olanzapine) and Abilify (aripiprazole) aren’t approved for use to address dementia-induced difficult behaviors, such as combativeness when trying to assist a patient who’s exhibiting intractable behaviors or experiencing delusions, hallucinations or paranoia, they are sometimes prescribed off-label.
Misuse of Antipsychotics in Dementia Patients
Recognizing that there has been an issue with the misuse of these medications in nursing homes across the U.S., in 2012, the Centers for Medicare & Medicaid Services established the National Partnership to Improve Dementia Care in Nursing Homes, a public-private coalition to improve the quality of care for individuals with dementia living in nursing homes.
“Unnecessary antipsychotic drug use is a significant challenge in ensuring appropriate dementia care,” the CMS noted in a press release, pointing to data that showed that in 2010, more than 17% of nursing home patients had received daily doses of these medications that exceeded recommended levels.
The mission of the partnership is to deliver person-centered, comprehensive and interdisciplinary health care that focuses on protecting residents from being prescribed antipsychotic medications “unless there is a valid clinical indication and a systematic process to evaluate each individual’s need,” the center reports. In 2014, the coalition set goals of reducing antipsychotic use in nursing homes by 25% by the end of 2015 and by 30% by the end of 2016.
Improved training, increased transparency and providing alternatives to these medications are all approaches the CMS has established to improve the situation. And there has been a drop in the use of these medications across the industry. Prevalence of antipsychotic use for long-stay nursing home residents had fallen by 40% between 2011 and 2019, CMS reports.
But in 2020, use of these drugs had begun to creep back up, according to data released in April 2021. This data also excludes patients who have a schizophrenia diagnosis, whether it’s a warranted diagnosis or not. The Times investigation found that when people with a schizophrenia diagnosis were included in the dataset, the decline in antipsychotic use that had been reported over the previous decade was about half of what had been stated.
Start with Non-Drug-Based Interventions
Still, in some situations, use of an antipsychotic might be appropriate. “There’s some evidence that antipsychotics can be effective in treating physically aggressive behaviors,” Galik says. Galik points to situations where an individual’s behavior that puts themselves and those around them at risk, and cannot be adequately managed using other intervention.
And for people who have a legitimate schizophrenia diagnosis, access to these medications is critical.
But, experts agree, in people with dementia who are acting out, the first line of defense should be behavioral intervention, not pharmaceuticals.
Skinner gives an example of a patient she worked with at a memory care facility years ago. “This man had been a highly successful trail attorney and he developed Alzheimer’s disease, and his family had him sent to to a specialized memory care facility. And every day, he came out of his room and he was very angry and agitated. He kept asking the staff, ‘Where is my office? Why can’t I find my office? I want to go to work. I need to go to work!’ And he kept this up every single day.”
The staff at the facility would respond that he didn’t have an office anymore, but that would just cause more frustration and agitation. This went on for some time before the director of the facility discovered a new solution. He asked the family to recreate the man’s room to look like his old law office, with a desk and law books.
“And that completely diffused the situation,” Skinner says. “When the man came out of his bedroom, he’d go to the dining room and have breakfast, and then he’d tell the staff he was going to work, and he’d go to his room. And in his mind, he was going to work in his law office. That was all it took for him to stop his aggressive behavior,” she explains.
This is a powerful example of how redirecting a person’s energy can help them avoid medication they may not need. “Interventions like these are designed to redirect the person into something purposeful,” Skinner says. And that’s important, she adds, because “everybody — I don’t care who you are, as part of our human nature — we all need to feel that we have a purpose in life. And even people who suffer from dementia need to have that feeling too. That’s why these types of things should be offered to them.”
Galik adds another example of engaging the individual directly to help them feel less isolated. “If a patient has a persistent delusion (a fixed, false belief) that food and medications are poisoned, this puts the patient at risk for weight loss and increased instability of medication conditions,” such as diabetes where maintaining good nutrition is critical to remaining healthy. “Non-pharmacological interventions such as providing favorite foods, opening containers and preparing medications so the patient can observe that this is being done safely, and providing reassurance from trusted family, staff and friends should be attempted first,” Galik says.
Other interventions could include:
— Music therapy. Music activates certain parts of the brain and can often transport someone to a previous time in their life via memories associated with the music. This can have a very calming effect in some people with dementia.
— Emotional reassurance. The Alzheimer’s Association recommends taking a moment to reassure someone with dementia if they become agitated. The organization recommends backing off, asking permission of the person if you can assist them, remaining calm and offering positive, reassuring statements. Assure them they are safe.
— Distraction and engagement in meaningful activity. Skinner says distraction activities that help engage a person with aspects of their former life can be helpful. For example, “a great activity for somebody that was a homemaker is to offer them a basket full of towels and ask them to fold them.” The activity can be soothing and also gives the person a sense of purpose.
But if these non-pharmacological interventions are ineffective, and the patient’s health and safety are at serious risk due to the paranoid delusions, “it may be appropriate to consider the use of an antipsychotic,” Galik says.
However, their use may not be so much about alleviating the patient’s suffering as the caregiver’s. “It’s inappropriate to use an antipsychotic if the behavioral symptom can be managed with non-pharmacological approaches, such as sensory stimulation,” Galik says.
Antipsychotics also shouldn’t be used to treat insomnia, or “if the potential risks, such as sedation, stiffness, falls, cardiovascular effects and a small increased risk of death from stroke and or pneumonia outweigh the potential benefits of the medication.”
While there are certainly some circumstances where the use of antipsychotic medications is absolutely called for — and the CMS acknowledges that the use of these medications shouldn’t decrease to zero — there’s still an effort underway to avoid overmedicating seniors with these powerful drugs.
“In my belief, there’s no medication that’s right or wrong. Medication is a tool,” Brownlowe adds. And how and when it’s deployed determines whether or not it’s being used well. “Medications need to be used responsibly.”
In terms of helping an elderly patient with dementia lessen symptoms, Brownlowe says there’s “a lot of articles about the superiority of behavioral techniques rather than using antipsychotics.” But these techniques take time, effort and the right training on the part of the caregiver who works directly with the patient.
The percentage of nursing home patients who are newly given antipsychotic drugs is one of the measurements U.S. News uses in its short-term rehabilitation rating for Best Nursing Homes. The short-term rehab rating evaluates a nursing home’s quality of post-acute care for patients recovering from a hospital stay such as after stroke, heart attack, infection or accidental injury. High levels of use of these drugs can indicate inappropriate use for behavior control rather than for medical treatment.
“When you have a nursing home that’s under-resourced, you don’t have enough people to take the time to provide personal care for someone who’s easily agitated and takes twice as long to work with that person to get them showered and cleaned up.” These seemingly simple tasks can be made infinitely more difficult if the patient is confused, agitated or uncooperative, and thus the medical team may receive a request from the caregiving team for a medication that quells these problematic behaviors. “It’s not being done maliciously” in most cases, Brownlowe says.
The question for health care providers working with older adults with dementia who are exhibiting paranoia and other difficult behaviors is how best to ease their suffering without overmedicating them and using these drugs as a form of chemical restraint, she says.
What to Ask for Your Loved One
If your loved one has dementia and is currently being cared for in a nursing home, ask about medications and how they’re being used. Brownlowe recommends asking:
Why is this medication being used?
It’s important to note that if your elderly loved one has always had a psychiatric disorder, the use of antipsychotics may be entirely necessary. As such, the conversation with the medical team will be quite different. Typically, schizophrenia or other mental illnesses where antipsychotics are used is diagnosed early in life, and treatment with these medications in a nursing home is often a continuation of ongoing treatment that was begun years before. “That’s not the category of patients in nursing homes that we’re talking about here. Here, we’re talking about patients who’ve received a new prescription later in life” related to their dementia diagnosis, Brownlowe says.
What is the expectation of this medication?
What is it supposed to help? What are the benefits that we can expect from this medication?
What are the side effects?
“It’s important to ask questions when a new medication is prescribed for a resident,” Galik says, “and families should feel comfortable asking about the indication of use of the medication, as well as potential side effects. Both families and staff can help to monitor for potential side effects and report any concerns to the prescriber.”
What alternatives are there to a specific medication?
Before the medication is prescribed, ask if there are alternative therapies. And after an antipsychotic is prescribed, if this isn’t working or the side effects outweigh the benefits, can we use a different medication?
Who is making decisions about medications?
“I think it’s really important for families and patients to understand who’s making these medication decisions,” Brownlowe says, because in some systems, it’s not always clear who’s making those prescribing decisions and why.
What else could it be?
Is there another condition that could be causing these issues aside from dementia? Brownlowe gives the example of a urinary tract infection.
“Older folks don’t always have the same symptoms” as younger adults when they get a urinary tract infection. “Some of the early symptoms in older adults might be changes in mental status, confusion, agitation and aggression.” So, if your loved one has exhibited a change in behavior, ask what else it could be — and for a comprehensive medical assessment, including blood work or a urine test — before jumping to an antipsychotic medication.
Is there an environmental trigger?
Brownlowe notes that for some older adults with dementia, communicating the underlying issue that could be causing aggressive or difficult behavior can be very challenging, but the cause could be environmental rather than physical.
For example, “if the family member can identify, ‘Mom’s always hated things that are red,’ and the medical team says, ‘We just changed to new red scrubs. Maybe we can make an adjustment,'” Brownlowe says. That’s a simple example, but the idea is to “take a look holistically at what’s happening before we jump into the antipsychotic medication bin.”
Galik adds that families can open this dialogue “during the care plan meeting. Families can share information with the nursing home staff about resident likes and dislikes, routines and meaningful activities that can be used to help prevent and manage behavioral symptoms of distress.”
Brownlowe encourages folks to “have as open a dialogue with the people who are caring for loved ones in facilities, and remembering that, for the most part, everybody is doing their very best to provide good care. Everybody wants the best for the patient.”
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Update 10/04/21: This story was previously published at an earlier date and has been updated with new information.