Alzheimer’s caregivers need updated drug rules to give families more time and peace | Opinion

Alzheimer’s disease robs patients of so much more than their health. It can rewire their personalities and undermine a lifetime of relationships with friends and family. Some patients even become violent and verbally abuse loved ones and caregivers. Sadly, outdated medical regulations can make it harder to treat these patients and preserve their ties to the people around them.

As an experienced physician who has spent years treating patients with neurodegenerative diseases in hospital, nursing home, and hospice settings, I have seen how a well-intended policy to limit the use of Food and Drug Administration-approved antipsychotic medications has made it much harder to care for these patients.

It’s time for the Centers for Medicare and Medicaid Services to revisit these rules to give patients and their loved ones more time.

My job is to weigh the risk and the benefits of treatments, and to make my patient’s lives as comfortable as possible. When other treatment options fail, the use of antipsychotic medications is necessary to ensure the comfort and dignity of our patients and to help limit violent outbursts and other agitated behavior. These treatments can provide families with precious time near the end by helping loved ones be awake and alert.

Too often, doctors prescribe approved medicines only to watch those same patients unravel again when they are transferred to a long-term care facility that is limited in the drugs it can administer to mitigate this behavior.

When these treatments are reduced at nursing homes, some patients become violent and hateful to family members they love, and to caregivers who bear the brunt of abuse. Some even start to hit, bite and spit to the point they must be sent to a hospital to be stabilized.

I see this terrible process occur almost every week. This is unnecessary pain and suffering that could be avoided if we were simply allowed to keep patients on the FDA-approved medication that was appropriate in the first place.

Alzheimer’s dementia is a truly terrible disease that leads to memory loss and cognitive impairment. More than 6 million Americans, including 1 in 9 over the age of 65, suffer from Alzheimer’s. More than 12 million Americans could be diagnosed with Alzheimer’s by 2040.

Nearly half of Alzheimer’s patients suffer from neuropsychiatric symptoms collectively referred to as “agitation.” Agitated patients can display aggressive behavior such as verbal outbursts and physical violence. Other symptoms include euphoria, depression, incontinence and difficulty with basic hygiene that family caregivers are not equipped to manage. Agitated patients are four times more likely to be institutionalized in nursing homes, requiring families to spend roughly three times more in medical costs per year.

Fortunately, the FDA has approved antipsychotic treatments that help manage these destructive symptoms, and more are in development. However, outdated rules from CMS restrict the ability of nursing homes to administer these treatments, even when they are appropriately prescribed by a medical professional like me.

If a physician caring for patients in a nursing home prescribes these treatments, the nursing home risks losing a star on its quality rating from CMS. Lower star ratings limit the federal funding facilities receive.

These policies were initially well-intentioned. Decades ago, more primitive antipsychotic treatments were used as “chemical restraints,” but today’s treatments are much more advanced and effective. Denying agitated patients FDA-approved treatments exposes providers to physical violence, family members to unnecessary traumatic experiences, and requires patients to be weaned off medications that work.

I have never been involved in the political process, but I feel compelled to speak out. Earlier this year, I led a letter-writing campaign from hospice care providers across the Kansas City area. I hope CMS will listen to medical professionals like me and give providers access to all the FDA-approved treatments available to ease the suffering of Alzheimer’s patients, their families, and their caregivers.