Antipsychotics exert a powerful and often irreversible change in healthy brain chemistry
On July 13, McKnight's posted a Daily Editor's Blog article from John O'Connor, decrying the increased federal focus on the misuse of antipsychotics as a front-line treatment for dementia. The article reveals a breathtaking lack of insight into the problem of antipsychotics in long-term care and the superiority of simple non-pharmacologic comfort-focused care.
The trigger for O'Connor's article was a recent OIG report that found that over 99% of resident assessment and care planning for residents receiving atypical antipsychotics did not comply with federal rules. With sarcasm, he indicates that 99% non-compliance is hardly newsworthy or even unexpected. That an Editorial Director of a well-known journal of long-term care issues would admit that non-compliance with federal rules is standard practice in America's nursing homes may be interesting to the millions of citizens who primarily foot the bill for the hundreds of billions of dollars paid to nursing homes through Medicare and Medicaid. As a condition of those enormous funds, nursing homes agree to provide care that meets the basic federal standards.
O'Connor then turns his attention to what he perceives as the benefit of antipsychotics for people with dementia: that “while far-from-perfect,” antipsychotics nonetheless “relieve pain and suffering.” Nothing could be further than the truth.
While people with dementia typically suffer cognitive deterioration that affects memory and judgment, they continue to experience the full range of human emotion and the capacity to experience pain and pleasure. Among the greatest tragedies of dementia is that its victims are often confused, uncomfortable, and in pain but they cannot address their needs independently or express their feelings and frustrations.
The reality is that challenging “behaviors” often associated with dementia are actually a form of communication. Since dementia patients have lost much of the ability to effectively communicate their distress, they act out. As one enlightened nursing home provider states, we can re-label “behaviors” as “needs” so that
§ “hitting” is “protecting”
§ “yelling” is “expressing”
§ “wandering” is “seeking”
There is no doubt that antipsychotics exert a powerful and often irreversible change in healthy brain chemistry. The drugs disrupt the brain's use of dopamine, a neurotransmitter critical to thinking, movement, and pleasure. The immediate result for people with dementia is they become sedate and subdued and difficult to arouse. The sedation leads to significant health problems from inactivity like pressure ulcers, incontinence, and infections, as well as falls and cardiovascular problems. In fact, the FDA requires antipsychotics be accompanied by a Black Box warning label telling users that the drugs nearly double the risk of death for elderly people with dementia.
Perhaps more importantly and contrary to O'Connor's claims, antipsychotics are associated with a significant deterioration in quality of life. Rather than relieve pain and suffering, antipsychotics eviscerate a person's ability to communicate his pain and suffering. Rendered into zombie-like states, drugged nursing home residents are unable to say whether they are in pain, hungry, or cold, and cannot experience meaningful human interaction.
O'Connor concludes that antipsychotics became popular in nursing homes because they were the best available option. While antipsychotics may have been perceived as the easiest available option after years of fraudulent marketing efforts of the pharmaceutical industry, they have never been the best option for most residents. Countless options, based on identifying the cause of a resident's distress and remedying it, offer superior quality of life without any of the side effects of antipsychotics. One study shows that regular administration of simple Tylenol outperforms antipsychotics in reducing challenging dementia related behavior. Proactively managing pain is just one component of dementia care focused on making residents comfortable instead of oblivious.
Those who advocate for less reliance on antipsychotics as a “treatment” for people with dementia are not focused on simple drug usage rates. Rather, we are looking to replace much of the drug use with comfort-focused care because people who are comfortable do not act out. We know it can be done because it has been done. There are many nursing homes throughout the country that do not administer antipsychotics to any residents. An increasing number of people are learning what these facilities already know: there is a better way.
Anthony Chicotel is the staff attorney for California Advocates for Nursing Home Reform (CANHR), a consumer advocacy organization.