Caring for someone with Alzheimer’s dementia is lonely and disorienting. The disease robs patients of their personality, often replacing it with someone who is angry and unrecognizable. I cared for Alzheimer’s patients for years, but I didn’t fully grasp caregivers’ desperation until I watched my dad disappear into a torrent of rage and volatility.
My father was always our rock. He was a hard-working truck driver who built his reputation on his dependability. Then things started to slip. My mother received a call one day that he had forgotten to turn the A/C on when delivering baby chickens to a farm. They were all dead when he arrived. At the time, I wondered, how could this happen? He was never forgetful.
As my father slipped further into Alzheimer’s, my mom and I discovered that the disease is much more than just memory loss. About half of the six million Americans with Alzheimer’s suffer from a related condition called agitation. These patients exhibit aggressive behavior, frequent verbal outbursts, and even physical violence. My father was one of these patients.
Treating these conditions related to Alzheimer’s present their own unique challenges. In the case of agitation, doctors, nurses, and family caregivers can’t always decide the best treatment options for patients because of outdated policies that dictate what medicines certain health providers can prescribe. These policies need to be updated to provide relief to patients, their families, and the people in the facilities that wind up caring for them.
One example is the rules around prescribing medications for people living in long-term care or skilled-nursing facilities. These antiquated policies often discourage doctors treating patients living in these facilities from prescribing certain medicines to treat dangerous conditions, including agitation, or force them to gradually reduce dosages. In some cases, those restrictions apply to medicines approved by the Food and Drug Administration to treat those conditions.
As I experienced firsthand, there are dangerous consequences for patients, their loved ones, and the people caring for them when agitation and other conditions related to Alzheimer’s go untreated. Doctors need more flexibility to prescribe effective treatments to these patients.
My father’s descent snowballed quickly. He went from forgetting to put away the dishes to more violent outbursts. It was scary to see my once-gentle father become violent. The disease robbed him of his mind, but it didn’t initially take his physical strength. He could be violent toward nurses and aggressive toward his family. He once berated me for 15 minutes straight while I drove him to a medical procedure. I know my father did not want to live like this. He was very religious and would have been appalled by his behavior.
I have cared for Alzheimer’s patients for years in my role as a nurse in long-term care facilities, so I know my father’s experience is not isolated. In the case of agitation, his doctors tried to work with us to prescribe medications that would blunt its effects, despite the repercussions for their organizations. But rules, overseen by the Centers for Medicare & Medicaid Services, forced prescribers to gradually reduce his dosage. We were eventually forced to move him to another facility that was able to provide better care, but the gradual dose reductions resulted in multiple hospitalizations and more expensive medications.
These conditions associated with Alzheimer’s and other forms of dementia often make it harder for families to care for their loved ones at home, increasing the likelihood that patients must be cared for in a professional setting — the same professional settings that are limited in how they can prescribe FDA-approved treatments. We need to update outdated rules that force caregivers like my family to shoulder unnecessary burdens in seeking the best care.
They say Alzheimer’s patients die twice — first at diagnosis, then once they eventually pass. My Father lived for almost 15 years. At the end, he had a few moments of clarity when he was calm enough to recognize me as his daughter. Absent a cure for the underlying disease, our health care system should provide patients with as many of those moments as the disease allows.
Amy Stewart, an Ely, Minnesota, resident, is the chief nursing officer for the American Association of Post-Acute Care Nursing and was a practicing long-term care nurse for decades.
