As we start 2024 anew and recover from family-filled holidays, we may have been reminded that celebrations often serve double duty as an informal assessment of health and well-being — including neuropsychiatric symptoms of Alzheimer’s.

Some may have observed a parent or grandparent who is increasingly confused, having trouble following a conversation, or quickly changing from calm to angry without explanation. Changes in mood, personality and behavior in an older loved one can be uncomfortable and pointing them out may seem disrespectful. 

Just as many of us focus on exercise and diet in the new year, it is important to encourage family members who experience such changes to see their doctors and healthcare providers. Diseases that damage the brain can impact how we interact with the world and lead to significant and disabling behavioral and psychological symptoms—also referred to as neuropsychiatric symptoms. Such symptoms may include agitation, depression, lack of emotion (known as apathy) and psychosis. 

When we think of Alzheimer’s disease, we typically think of memory loss or other cognitive abnormalities. But neuropsychiatric symptoms are nearly as universal, with one or more symptoms affecting nearly all people with Alzheimer’s over the illness’ course. We rarely hear about these symptoms because they are highly stigmatized and frequently dismissed as willful behavioral problems that individuals and caregivers need to “handle,” often without much guidance or social support. 

However, it is neuropsychiatric symptoms such as agitation that can cause the greatest challenges for the individual living with Alzheimer’s and their caregivers. 

Research suggests that almost half of people living with Alzheimer’s experience agitation, which can cause restlessness, pacing, screaming, shouting, hitting and physically resisting assistance. People living with Alzheimer’s-related agitation are four times more likely to be institutionalized. Families spend roughly three times more in medical costs per year and are much more likely to have a reduced income. Caring for a patient suffering from agitation can require an additional 20 hours of work per week. 

For decades, doctors, individuals living with Alzheimer’s and their families had limited treatment options to address symptoms like agitation. Fortunately, there are more tools at their disposal today to treat these dangerous symptoms, including one new FDA-approved therapy and more in development. 

However, patients and providers face extensive barriers accessing these FDA-approved or indicated treatments because the Center for Medicare & Medicaid Services wants a blanket reduction in the use of antipsychotic treatments. Nursing homes are given lower ratings in the Five-Star rating system for treating patients with antipsychotic treatments, even if those treatments are FDA-approved. Nursing homes are also required to attempt to lower the dose of patients taking antipsychotic medication – even if it is for an FDA-approved condition. 

Peer-reviewed, scientific research has concluded that it is the neuropsychiatric symptoms of Alzheimer’s, such as agitation — not the use of antipsychotic medications to treat the symptoms — that accelerate risk of institutionalization and death. A May 2021 U.S. Department of Health and Human Services Inspector General report found the current 

CMS antipsychotic quality measure fails to distinguish between appropriate and inappropriate use of antipsychotic treatments. 

The current metrics fail to capture data on crucial points, such as the number of residents who are involuntarily kicked out because facilities are directed against medically treating residents who are struggling. Extensive research work commissioned by the U.S. Department of Health and Human Services in September 2022 on nursing home-initiated involuntary discharges found that behavioral symptoms and psychiatric and mood disorders are the most prominent risk factors for live discharge. 

We will become a nation filled with homeless people living with Alzheimer’s if these policies don’t change. 

The reality is that Alzheimer’s-related agitation may require medical attention. When medically appropriate and prescribed by a professional, patients, family and providers should be able to access FDA-approved treatments without facing stigma or barriers. Providers would never be forced to limit the use of FDA-approved treatments for physical health conditions like diabetes or high blood pressure. 

For the past three years, Project PAUSE member organizations — representing long-term care nurses, medical directors, pharmacists, geriatric psychiatrists, family caregivers and older adults — have urged CMS officials to update these measures. We’ve reasonably asked them to require documentation of the “what, why and how” a medication is being prescribed. The agency has taken zero accountability, and our pleas have been ignored. 

The U.S. healthcare system can seem fundamentally broken while policymakers are often left with no clear fixes to broad problems. That is not the case here. The Biden administration and Congress can work with CMS to make several small but meaningful policy changes to provide immediate relief. 

CMS should update its existing policies around use of antipsychotics to reflect FDA-approved or indicated uses. Long-term care facilities should not be penalized in the Five-Star Rating System for using FDA approved products appropriately prescribed by a licensed provider. Congress should provide additional resources to nursing homes and long-term care facilities, especially for the hiring and training of providers to care for the growing number of aging Americans suffering from Alzheimer’s. 

Sue Peschin is the President & CEO, Alliance for Aging Research and Chad Worz, PharmD, BCGP is the Executive Director, American Society of Consultant Pharmacists. Together, they co-convene Project PAUSE (Psychoactive Appropriate Use for Safety and Effectiveness), an ad hoc coalition of national patient and professional organizations collectively advocating on clinical regulatory and legislative issues in long-term care.

The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.

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