The tragedy of Alzheimer’s disease isn’t just the lives it takes but how the disease can rob patients of their personalities and their ability to function.
One of my patients who suffers from late-stage Alzheimer’s carries a baby doll wherever she goes. She cares for it as she would her child or grandchild, refusing the food she is served to instead feed it to the doll. She has lost so much weight that we made the difficult decision to take the doll away at mealtimes. This throws her into a fit of rage and despair. She verbally abuses anyone around her. At times, she physically assaults them.
This tragic but preventable situation is typical of my experience as a geriatric psychiatrist caring for patients suffering from a range of neurodegenerative diseases, including Alzheimer’s, Parkinson’s and Lewy body dementia.
While we don’t have a cure for many of these diseases, we do have FDA-approved treatments that can help mitigate the more difficult symptoms, collectively referred to as Agitation associated with Dementia due to Alzheimer’s disease. These treatments can provide families with quality time together and make it easier for caregivers to treat patients with dignity and respect in their final years.
However, outdated regulations from the Centers for Medicare and Medicaid Services restrict how nursing homes and long-term care facilities can administer these treatments, even when they are prescribed appropriately by a provider. These rules also affect Americans suffering from a wide range of mental illnesses, including bipolar disorder and major depressive disorder.
An estimated 6 million to 9 million Americans suffer from Alzheimer’s and other related dementias. Seventy-six percent will exhibit agitation or other neuropsychiatric symptoms. Agitated patients can be restless, anxious, and display a variety of aggressive behavior, including biting, hitting, spitting, and verbally abusing those caring for them. I have seen agitated patients wander out of nursing homes, pace for hours on end, refuse to eat and lose weight, while some require more than three caregivers to change their Depends.
The Food and Drug Administration has recently approved an anti-psychotic medication that effectively manages these difficult symptoms. I’ve seen these treatments calm patients and give them quality time with family and loved ones not possible before. However, federal rules haven’t caught up with advances in science.
CMS restricts how long-term care facilities and nursing homes can administer these FDA-approved anti-psychotic treatments. If facilities provide these treatments to patients, CMS will lower their “Five Star” ratings. Facilities with lower “Five Star” ratings receive drastically less federal funding. Many facilities are already understaffed and in desperate need of financial resources. These rules were instituted decades ago when anti-psychotic treatments were much more primitive and had difficult side effects. But modern treatments are much more effective and advanced.
I’ve lost count of the times I’ve prescribed these treatments to my patients, only to see facilities refuse to administer them because of CMS’ regulations. I’ve even been told to wait until a patient who is using these treatments is discharged or passes away before I can prescribe treatments to another resident who needs them.
Patients using these treatments often wait months before they are accepted by a long-term care facility. Once admitted, they are slowly weaned off these treatments in a difficult and time-intensive process known as “gradual dose reduction.”
Long-term care facilities are operating within restrictive rules set by CMS. By not using treatments prescribed by medical professionals, patients will be more likely to fall, get bed sores, injure themselves, staff and other residents. They also lose limited, valuable time with family.
New and more restrictive rules went into effect in March. Providers are now required to receive written approval from patients, their families, or through a power of attorney. Facilities must also try “less restrictive alternative” treatments first.
CMS and Congress must change course. America is getting older, and 12 million Americans will suffer from Alzheimer’s by 2040. Nursing homes and long-term care facilities don’t have the funding or staff to care for this growth.
As I get older, I’ve realized that I cannot just care for my patients. I must also be an advocate for them. That’s why I’m urging CMS to reconsider its outdated and harmful restrictions on anti-psychotic treatments.
