This story was originally published by Knowable Magazine.
After Bobby Tweed moved into a Tennessee nursing home, the spirited 78-year-old with dementia grew listless and withdrawn. Tweed, a gentle man who his daughter says “never hit anybody in his whole life,” was suddenly labeled “agitated” after a scuffle with another resident.
In reality, Tweed was suffering from a common, treatable urinary tract infection, a physical condition well known to trigger temporary delirium and behavioral changes in dementia patients. Doctors treated him for the infection, but facility staff still turned to powerful psychotropic drugs that, according to a wrongful death lawsuit, were administered without his family’s knowledge or consent.
The medications achieved what they were meant to do: They stopped behaviors caregivers found difficult.
“They just kept him drugged up so they didn’t have to deal with him,” says his daughter, Robin Tweed Keller. Tweed was left in a stupor so deep that family members who came to visit at different times of the day could not wake him up.
As her father retreated behind a chemical haze, Keller was left wondering whether what staff called “agitation” was really a language that no one had tried hard enough to understand.
That possibility is at the center of an ongoing struggle in dementia care. While memory loss is the hallmark of dementia, the disease is also marked by troubling changes in behavior — such as aggression, shouting, irritability and depression. These symptoms are frequently treated with antipsychotics, despite longstanding warnings about serious risks of their use in older adults with dementia.
A pair of 2026 federal watchdog reports indicate that the practice remains deeply entrenched in US nursing homes. The Department of Health and Human Services Office of Inspector General found that facilities still use the medications as “chemical restraints,” often without first attempting required non-pharmacological interventions. Investigators also detailed how some facilities hide their true prescribing rates by inappropriately diagnosing residents with schizophrenia, a condition excluded from federal quality measures tracking antipsychotic use.
“It’s showing that the problems continue to exist in full force in nursing homes, and we still have not solved this problem, and we still need to do more,” says Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care.
The issue extends beyond care homes to older adults receiving care in a range of settings, including those living in residential facilities and those remaining in their own homes. In all, national prescribing data show that antipsychotic use among adults 65 and older increased by nearly 52 percent between 2015 and 2024, with long-term use (defined as more than four months) rising by almost 65 percent.
The analysis included more than 8 million older Americans who received at least one antipsychotic prescription, reflecting the broad use of drugs whose benefits and risks remain hotly debated.
In response, many clinicians and advocates are pushing for a different approach. Rather than treating these dementia-related actions as symptoms to be suppressed, they are instead describing them as expressions of unmet needs.
“Behaviors can have meaning to people with dementia,” says Jennifer Watt, a geriatrician at the University of Toronto and a coauthor of a 2026 article on the subject in the Annual Review of Clinical Psychology.
As language deteriorates, people may express themselves through actions instead of words. A person wandering the kitchen may be hungry or thirsty but unable to articulate it. Someone resisting a bath may be reacting to cold water or pain from arthritis. “It’s actually just people trying to communicate a need in the only way that they are able to at that point in time,” Watt says.
Poorly Defined Symptoms
Nearly every person diagnosed with dementia — an estimated 97 percent — will eventually experience changes in mood, perception or behavior. “There are complexities of the neurodegenerative changes in the brain that fundamentally alter how the brain works,” says Watt. The precise mechanisms behind these manifestations remain poorly understood.
Some develop anxiety or depression. Others grow emotionally flat and withdrawn. Hallucinations and delusions may distort reality. Many develop what clinicians call “agitation,” a broad and imperfect term that can include pacing, restlessness, repetitive questions and sudden flashes of anger or even violence.
Clinicians often group these experiences under the umbrella of “behavioral and psychological symptoms of dementia,” or BPSD.
For decades, nursing homes, hospitals and other residential care settings have often responded with antipsychotic medications. Originally developed in the 1950s for schizophrenia, antipsychotics became widely used in dementia care to manage BPSD behaviors such as hallucinations, delusions, agitation and aggression — symptoms that can also occur in schizophrenia.
By the 1970s, federal investigators were already warning that nursing home residents were being chemically restrained. Reforms beginning in the 1980s helped to curb the use of older, “typical” antipsychotics, but a newer generation of “atypical” drugs, considered safer, soon took their place.
Then in the early 2000s, studies linked these newer antipsychotics in older adults with dementia to sharply increased risks of death, stroke, heart failure and accelerated cognitive decline. Mounting evidence of these and other serious harms, including a heightened risk of bone fractures related to falls, prompted the US Food and Drug Administration to issue its strongest “black box” warning. Federal regulators introduced new oversight measures, including adding antipsychotic use to Medicare’s public Five-Star Quality Rating System, which tied a facility’s score to its prescribing rates.
Use declined, only to rise again during the Covid-19 pandemic, when staffing reached critical lows and family visits were restricted. Today, antipsychotic use remains substantial: Under a newly revised federal measure designed to capture prescribing more accurately, about 17 percent of long-stay nursing home residents receive an antipsychotic.
Despite their widespread use, antipsychotics are only marginally effective in treating the behavioral symptoms of dementia. Results from randomized controlled trials are frequently characterized as weak; larger analyses suggest benefits that are barely perceptible compared with placebos. While these drugs are powerful sedatives that can make a person docile, experts say they do little to solve the actual distress the individual is experiencing.
“Instead of getting to the root problem and addressing the problem, we’re quieting them down,” says Smetanka. “And then that’s what leads to significant problems with their health and well-being.” On top of the medications’ direct risks, a resident who is sleepy or less responsive may move less and be less able to signal pain or a new illness.
Best Practice vs. In Practice
Medical guidelines generally recommend trying non-drug approaches first for behavioral symptoms of dementia. In practice, though, medications are often the default. Growing efforts to close that gap are rooted in the idea that behaviors in dementia can have “meaning” — that they may signal unmet needs rather than simply be symptoms to suppress.
Non-drug approaches range from personalized music playlists and walking programs to reminiscence therapy using old photographs and household objects. More specialized methods, such as one called Snoezelen therapy, use controlled light, sound, texture and scent to calm people experiencing sensory overload or deprivation.
Unlike antipsychotic medications, non-pharmacological interventions are generally considered low risk, though the evidence supporting their effectiveness remains mixed. Studies are often small, difficult to standardize and nearly impossible to blind in the way that drug trials are conducted.
Even so, some research has shown promising results. A review that pooled and assessed the findings of multiple studies, led by Watt, showed that sensory-oriented approaches — such as music therapy, massage and outdoor activity — reduced agitation as well as or better than medications. She and her colleagues also found that exercise, cognitive stimulation and reminiscence therapy can relieve depression more effectively than antidepressants, which often perform little better than a placebo in patients with dementia.
Best practice is to first assess and manage any underlying causes, says Helen Kales, a geriatric psychiatrist and mental health services researcher at the University of California, Davis. The cause may be something as simple as too much noise, an unfamiliar routine, urinary tract infections or pain that the person can no longer describe.
Kales recalls a man with dementia who was brought to see her after his daughter said he had become increasingly “ornery” and “awful.” The apparent behavioral problem turned out to have a physical cause: He had a rotator cuff tear.
Not every case is so straightforward. Even caregivers committed to person-centered care often struggle to determine which interventions work best and how to sustain them in practice.
In 2024, Watt helped to develop Canadian clinical practice guidelines for the most common behavioral and psychological symptoms of dementia. As part of that work, she and her team reviewed dementia care guidelines from around the world and found little agreement about best practices. “It’s not consistent,” says Watt, “which of course is really confusing and does not instill confidence in care providers.”
Caregivers also face practical barriers, including limited training and chronic understaffing. A certified nursing assistant may care for well over a dozen residents during a day shift, and far more in lower-staffed facilities, says Smetanka. Under those conditions, medication can be the quickest way to stabilize a situation. Studies consistently show that facilities with fewer workers use antipsychotics at higher rates. And annual staff turnover rates ranging from 50 percent to as high as 100 percent at certain facilities make it hard for caregivers to know residents well enough to interpret their behavior.
“We’re just not structured to really handle the way these symptoms unfold,” says Kales.
Economic incentives reinforce the pattern. Antipsychotic medications are relatively inexpensive and typically covered by insurance, while non-pharmacological approaches require staffing and training that many facilities cannot sustain. According to a 2018 Human Rights Watch study, some families report feeling pressured to agree to sedating medications, with facilities warning that a resident will be evicted or require an expensive 24-hour private nurse if they do not comply.
Industry groups often argue that staffing shortages and financial pressures leave facilities with few alternatives. But those constraints do not fully explain why some nursing homes rely more heavily on antipsychotics than others. “You do see pockets of progress,” says Smetanka. “There are a lot of places that do provide very good care for people with dementia, for residents with all kinds of needs, without inappropriately prescribing drugs to them in order to control their behavior. So, if they can do it, everybody else can do it too.”
What stands in the way is not always a belief that medication is the easier or cheaper option. The Human Rights Watch report found that nursing home staff often believed antipsychotics genuinely benefited residents. A 2017 Vanderbilt University study described caregiving staff feeling morally obligated to “give them something” when residents appeared distressed. Yet workers also noted dramatic improvements when residents were taken off the medications, including greater alertness, responsiveness and engagement in daily life.
To help caregivers respond to distressing behaviors without defaulting to medication, Kales led the development of the DICE approach — short for Describe, Investigate, Create and Evaluate. The first step asks caregivers to describe behavior in concrete terms rather than relying on catchall labels like “agitation.” Staff are trained to “play back the behavior, like a movie,” Kales says. They’re asked to note what happened, when, and under what circumstances.
Next comes investigation. Could the person be in pain? Constipated? Frightened by noise or confusion? The third step involves creating a plan tailored to the likely causes. That may mean simplifying routines, adjusting communication styles or introducing more meaningful activity. Finally, caregivers evaluate what worked and what did not.
“It’s really asking our teams to slow down before we make any reaction,” says Kelsey Burnham, a Michigan-based program director at Ascension Living, a nationwide senior living provider that implemented DICE across its locations earlier this year.
Burnham says the approach gives staff “a unifying language” for interpreting and responding to residents’ distress. “I think we’re so focused as an industry on what we can’t do that it really limits our thinking,” she says. “What’s not talked about as much … is, what can we do?”
The new framework has been adapted for home use, too. As a digital tool called WeCareAdvisor, it walks family members through the process of describing behaviors and identifying possible triggers. The app uses a database of roughly 1,000 evidence-based strategies to suggest non-drug approaches that can be tried in different situations.
A randomized trial of 262 caregivers using the app found modest improvements in caregiver distress and well-being. But the tool did not significantly change the frequency or severity of behavioral symptoms over three months, leaving open questions about how much it can change day-to-day dementia care.
Reverting to Medication
Even as researchers continue to make the case for non-pharmacological approaches, broader industry trends may be steering care back toward medication.
Federal minimum staffing standards have already been rolled back. At the same time, a lobbying coalition known as Project PAUSE — backed by pharmaceutical companies and groups from the long-term care industry — is pressing federal regulators to overhaul oversight of antipsychotic prescribing. Among the coalition’s goals: removing the current antipsychotic measure from the federal nursing home rating system and replacing it with a system that would give facilities more leeway to justify prescribing.
Critics argue that the changes would undermine the few transparency safeguards available to families and regulators. “When you take away all those mechanisms, I would not be surprised if we saw the numbers increasing again,” says Smetanka.
Studies have also documented what researchers term a “balloon effect” — as scrutiny of antipsychotics intensifies, prescribing shifts toward other sedating drugs, including opioids as well as anticonvulsants that face less oversight.
Meanwhile, a new medication may complicate the conversation. In April 2026, the FDA approved Auvelity, a combination of dextromethorphan and bupropion, specifically for agitation associated with Alzheimer’s disease. The drug appears to be less sedating and potentially safer than many antipsychotics used in dementia care.
The Alzheimer’s Association, a nonprofit organization that funds Alzheimer’s and dementia research, describes the decision as a significant expansion of options for patients and clinicians who have long faced limited and often risky choices for managing agitation.
Still, some experts worry. The rating scales used in drug trials can define “agitation” broadly, encompassing behaviors ranging from pacing and restlessness to yelling and aggression. Kales is concerned that a new, seemingly safer drug could encourage more behaviors to be swept under that label — and treated with medication.
“Sadly, this means more drugs and less person-centered care,” says Kales. “Why take the time to look for underlying causes when you can medicate?”
Even promising new treatments, advocates contend, cannot substitute for adequate staffing, caregiver training and individualized care. For many families, these are not abstract policy debates, but daily questions about dignity, safety and whether their loved ones will be treated as people with needs and emotions rather than disruptions to be managed.
It is a reality that Robin Keller lived through with her father, Bobby Tweed. Years after his death — officially attributed on his death certificate to an interaction between the drugs he was given — she still wrestles with the “100 ifs” of what she might have done differently.
Dementia had slowly chipped away at the vibrant practical joker who spent his retirement volunteering with the fire department and cooking hamburgers at local horse shows. But for Keller, the deeper tragedy of his final weeks was that a flawed system had chemically shuttered what remained of his spirit before his body gave out.
This article originally appeared in Knowable Magazine, a nonprofit publication dedicated to making scientific knowledge accessible to all. Sign up for Knowable Magazine’s newsletter.
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