The call usually comes from the memory-care unit or the nursing home. Mom’s been agitated. She swung at an aide. The doctor wants to start her on something to calm her down.
You’ve got about 30 seconds to decide whether to say yes. Plenty of families do, assuming the professionals know best.
Here’s what you should know before you answer: More than 5 million Medicare beneficiaries have a dementia diagnosis, and about 1 in 4 of them are prescribed antipsychotics or other brain-altering drugs, often without a documented reason, according to a KFF Health News investigation that also ran on NPR.
That estimate comes from a study published in JAMA in January. Researchers at UCLA looked at five classes of drugs — antipsychotics, benzodiazepines, sleeping pills, barbiturates and certain antidepressants — among older adults in traditional Medicare from 2013 through 2021. About 25% of those with dementia were on them.
Nursing homes are under a federal microscope on this, and it’s still common. Leaving out residents with schizophrenia, about 1 in 7 nursing home residents got an antipsychotic in 2025, according to federal data cited by KFF Health News.
The stakes are real.
On antipsychotic labels, the Food and Drug Administration requires a boxed warning — its strongest — saying older patients with dementia-related psychosis who take these drugs face a higher risk of death.
An FDA analysis of 17 placebo-controlled trials, mostly of newer antipsychotics, found that about 4.5% of patients on the drugs died over a typical 10-week trial, versus about 2.6% of those on a placebo.
None of this means these drugs are never the right call. Lauren Gerlach, a geriatric psychiatrist and associate professor at the University of Michigan Medical School, told KFF Health News that “for some patients, these behaviors are so severe that medications will be required.”
But “sometimes necessary” isn’t the same as “the first thing we reach for.” Here are six questions to ask before you sign off.
1. Has anyone ruled out pain, infection or another medical cause?
A person with dementia often can’t tell you their ear hurts or that it burns when they urinate. So the pain comes out as behavior.
The Alzheimer’s Association says urinary tract, ear and sinus infections can cause pain that shows up as restlessness or agitation, and that a medical exam may turn up other treatable problems feeding the behavior.
Consider Marjorie Tingley, who lived in the memory-care unit of a Michigan senior living community, according to KFF Health News. Before agreeing to medication, her sons wanted her checked for a urinary tract infection, which they say had previously caused her to be agitated.
The facility collected a sample but didn’t make sure a lab tested it for more than a week. When hospital doctors later examined her, they confirmed a UTI, and she got antibiotics.
Ask about existing medications, too. The Alzheimer’s Association notes that side effects and interactions among drugs can change behavior. That’s how people end up in a prescription cascade — a new pill to treat the side effects of an old one.
2. What non-drug approaches have been tried?
The Alzheimer’s Association’s position is blunt: Always start with approaches that don’t involve drugs. Medication may be appropriate when those fail despite being used consistently and the symptoms are severe or someone could get hurt.
Gerlach told KFF Health News there’s evidence that aggression is better handled without drugs — by looking for underlying medical problems and heading off the situations that set a person off.
So ask the staff what they’ve actually done. Have they figured out what happens right before an outburst? A noisy shower room, a rushed aide, a change in routine? Have they changed anything in response? If the answer is a shrug, you’ve learned something.
3. Why this drug, and is this the lowest dose that works?
Ask what, specifically, the drug is supposed to treat. That’s a fair question, because the FDA label for at least one widely used antipsychotic says that it isn’t approved to treat dementia-related psychosis.
The Alzheimer’s Association says that when medication is used, doctors should begin with one drug at a low dose and watch closely for side effects. The dose shouldn’t go up without a careful evaluation, and the smallest effective amount should be used for the shortest possible time.
The Tingley sons pushed on this. According to KFF Health News, they approved just 2.5 milligrams of Zyprexa a day — half of what Eli Lilly, its maker, recommends as a starting dose. You’re allowed to ask why a doctor wants more.
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4. When will it be reviewed or tapered?
A calming drug shouldn’t become a permanent fixture by default. In nursing homes, federal rules back you up.
Under federal nursing home regulations, residents on psychotropic drugs must get behavioral interventions and step-by-step dose cuts aimed at getting them off the drugs, unless that’s clinically contraindicated. A licensed pharmacist must review each resident’s drug regimen at least monthly.
As-needed, or PRN, orders are also limited. A PRN order for a psychotropic drug generally runs out after 14 days, and an as-needed antipsychotic order can’t be renewed unless the prescriber evaluates the resident first.
Ask for the review date in writing. If your loved one is in assisted living or a memory-care community rather than a nursing home, ask what review schedule the facility follows — these federal rules are written for nursing homes.
5. Who consented, and can we say no?
Find out who signed off. If your parent can’t make decisions, the person legally authorized to speak for them — often an adult child with health care power of attorney — should be part of this call.
Federal rules give nursing home residents the right to turn down or stop treatment and to designate a representative under state law. The Centers for Medicare & Medicaid Services also says nursing homes can’t use chemical restraints — drugs — to discipline residents or for the staff’s convenience.
That’s the key distinction. A drug that treats genuine distress is medicine. A drug that just makes someone easier to manage is a restraint.
Be ready for pressure. KFF Health News reported that some families feel they must either consent to medicating a loved one or risk having them evicted from the facility.
6. Can I see the medication list and records?
Ask for a complete, current list of every drug your loved one gets, including as-needed ones, with doses and the reason for each.
CMS says nursing home residents have a right to complete information about their medical condition and the prescription and over-the-counter drugs they take. Federal rules require a facility to provide access to records within 24 hours (not counting weekends and holidays) and copies with two working days’ notice.
Compare that list against what the doctor told you. Mistakes and dose creep are easier to catch on paper than in a hallway conversation.
The bottom line
Some people with dementia truly need these drugs. But too many get them when something else might have worked, and the FDA’s warning tells you what that can cost.
Your job isn’t to play doctor. It’s to ask the questions a busy system skips: Is something else causing this? What else has been tried? What’s the plan to stop?
Keep a full medication list and bring it to every appointment. And if your loved one is on a pile of prescriptions, their Medicare plan may review that risky drug mix for free. Take them up on it.
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