Outdated Medicare rules prevent some dementia patients from getting the medications they need

Memory loss is the most obvious symptom of Alzheimer’s disease. But for the more than 6.5 million Americans who suffer from Alzheimer’s disease — and the people who support them — memory lapses are often the least of their problems. Many people with Alzheimer’s or other forms of dementia also experience mood and behavior symptoms ranging from anxiety and depression to violent outbursts and psychosis.

Family members, caregivers, and even some medical providers often dismiss these so-called neuropsychiatric symptoms as acting out, with behavior that’s within an individual’s control. Although these symptoms can be very disruptive and overwhelming, they aren’t the individual’s fault or an extension of their personality — they are another manifestation of the disease.

The assumption that people with dementia can control these behaviors has led to a widespread misunderstanding that often results in social stigma — like that associated with other mental health conditions, such as depression and anxiety. And that stigma keeps many individuals with Alzheimer’s and their families from seeking professional help. For those who do ask for help, government red tape often prevents clinicians from prescribing medications that can effectively treat their neuropsychiatric symptoms.

As a nurse practitioner and the director of a comprehensive dementia care practice, I work every day to help people living with dementia and their families manage not just memory loss but also the neuropsychiatric symptoms that often accompany it.

Far too many of them suffer in silence. That’s a shame, since these symptoms can often be mitigated with the right approach.

When clinicians have a chance to evaluate their patients’ symptoms, they can identify appropriate treatment strategies and help caregivers implement them. For example, many people with dementia and their families can control symptoms like anxiety, depression, and inappropriate behaviors by establishing a predictable daily schedule, engaging the person in meaningful activity, and creating a quiet and comforting living environment.

In other situations, an individual’s neuropsychiatric symptoms are severe enough to warrant medication. In 2023, the FDA approved the first medicine specifically for people with Alzheimer’s who need help managing agitation. Other antipsychotic drugs, like olanzapine, can also help mitigate these symptoms.

Yet outdated regulations often prevent these medications from reaching the people who need them. The Centers for Medicare and Medicaid Services, which determines coverage for its beneficiaries and influences other insurance plans, has established policies that make it more difficult for providers to prescribe antipsychotic drugs when appropriate. These limitations make it particularly difficult for individuals who move into long-term care facilities, where providers may discover they are no longer permitted to administer the medication the person relied on while living at home.

It’s a widespread and growing problem, especially since people with dementia who experience mood changes, violent behavior, and other neuropsychiatric symptoms are four times as likely to be sent to a long-term care facility or institutionalized — finding themselves in the very place least likely to be able to treat their symptoms.

CMS’ limitations are based on good intentions: wanting to keep an eye on how clinicians are using certain medication in institutional settings. But the policies should never keep a health care professional from providing the most appropriate care for their patient’s unique symptoms and medical needs.

A medical provider would never leave a tumor or broken bone untreated, so why are we leaving dementia patients’ symptoms untreated? Everyone deserves high-quality, effective, and judgment-free care. It’s time for CMS to scrap policies that undermine this goal.

Carolyn Clevenger, a gerontological nurse practitioner, is the founder and director of the Integrated Memory Care practice at Emory University.