Alzheimer’s and similar neurodegenerative conditions aren’t just diseases of the memory, but diseases of the whole mind. They lead to personality and behavioral changes that, as they progress, prove ever more challenging for caregivers. Faced with difficult-to-manage symptoms—such as aggression, agitation, and psychosis—doctors sometimes turn to off-label prescriptions of antipsychotic medications.

But these serious psychiatric drugs are overprescribed and used inappropriately for off-label dementia management, according to a new study of older patients in New York. Data assembled by researchers from across the state revealed that among homebound elderly patients receiving home health care services, those with Alzheimer’s and related dementias (ADRD) were more than twice as likely to be taking antipsychotic medications than other elderly home-care patients, a difference the study authors say indicates overprescription.

Anti-psychotic drugs should be a last resort

Most antipsychotic medications, including all that were included in the study, aren’t approved by the U.S. Food and Drug Administration to treat dementia, but many physicians continue to use them anyway, making it a common off-label use of the drugs. According to the best practices set forth by the Alzheimer’s Association, off-label antipsychotic drugs should be a last resort for the behavioral and psychological symptoms of dementia, collectively referred to as BPSD. Caregivers and physicians are asked to first exhaust non-drug options of behavioral management, which include strategies like avoiding confrontation and ensuring that a patient gets sufficient rest. Even then, prescribing common antipsychotic drugs requires a careful calculation, as their use is associated with an increased risk of both heart attacks and death more broadly. According to the researchers, the rate of prescriptions given to patients in their study is much larger than previously identified rates in similar cases.

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More than 6,600 Medicare patients across the state of New York were included in the study, published Sept. 6 in the Journal of the American Geriatrics Society. The cohort included 889 subjects with Alzheimer’s and related dementias. Information recorded by nurses during home visits in 2019 revealed that 17.2% of patients diagnosed with ADRD were prescribed at least one antipsychotic medication—despite not being diagnosed for psychosis—compared to 6.6% of non-ADRD patients.

“These medications are sometimes prescribed inappropriately for patients with dementia who are experiencing agitation or restlessness without underlying psychosis,” the study’s authors, led by University of Rochester assistant professor Jianjiao Wang, told TIME in an email. “These symptoms are problematic to caregivers and less so to people who experience them, so they may not seek medical care and as a result, not prescribed these drugs.”

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The study isn’t the first to raise concerns about misprescribing antipsychotics. There remains a debate among geriatric psychiatrists about how these drugs can ethically be used to treat dementia patients—and whether prescribing them is “a necessary evil,” as one British researcher has written, or if they are used as chemical restraints and sedatives simply for the ease of caregivers. It is, however, the first U.S.-specific study in over a decade to collect real-life prescription data from a large cohort, although similar suspected overprescription rates have been recorded in both the U.K. and Australia. It is also one of the few to focus exclusively on “community-dwelling” older adults, or those living outside of nursing homes—what the researchers called an “under-studied” setting for overprescription.

Few good options for caregivers

Caring for dementia patients requires a balancing act every day: Minimizing the risk that an agitated patient will cause harm to themselves or others can be at odds with enabling them to still feel themselves and live independently in calmer moments. According to the New York study, dementia patients living with ADRD who take antipsychotics are less likely to regain the ability to engage in daily activities—known to slow the progression of such diseases—following a health event when compared to those who don’t.

Fixing the issue of overprescription is difficult because so much of it “comes from a real sense of desperation by both clinicians and family/caregivers,” Wang and her coauthors say. “We have not had a lot of options for medications specifically to treat troublesome symptoms in dementia. The struggles experienced by family caregivers are real.”