Her husband brought her into my clinic for evaluation, and for the next few years she was my patient. Her illness had begun with memory difficulties a year before, which had led to early retirement. She forgot the names of people she knew. She forgot to turn off the stove after cooking. She got lost wandering around neighborhoods familiar to her. And then her language changed. She had trouble finding words and subsequently developed a paucity of speech. She became confused more easily and could no longer interact with anyone other than her husband. Eventually, she couldn’t speak at all and moaned incomprehensibly. She retreated into an opaque world.
She developed gait apraxia, or the inability to walk despite normal strength in her legs; she had forgotten how to ambulate. At night, she screamed in delirious agitation without any provoking incident, the way a wild dog howls. And, like a small child, she no longer controlled when and where she went to the bathroom. She still recognized her husband: she remained calm around him, was most at ease around him, let him feed her, and lived with him. Her diagnosis was a variant of fronto-temporal dementia, a neurodegenerative disease primarily affecting the frontal and temporal lobes of the brain.
At one clinic visit, I offered the husband help. Perhaps a nurse could take care of her, I suggested. But he declined. “They don’t know her like I know her, so I should be the one taking care of her,” he replied. Indeed, as time when on, it was he who took on the burden of her care. He changed her diapers, fed her, absorbed her violent behavior, wheeled her around the house, and stayed up with her at night as she moaned and screamed. Their circadian rhythms, out of sync with the world around them, aligned.
What Makes Us Human?
This remarkable dedication by a family member is not always seen in the field of medicine. Not infrequently, families drop their demented loved ones off in the emergency room for placement in a facility. I have even had conversations with sons and daughters of demented patients who have told me they don’t plan on visiting and that we should put the patient in a nursing home.
In many ways, demented patients present the greatest challenge to the question of what makes us human. Are we still human when we lose a sense of self? Victims of dementia ostensibly lose all power of reason, recognition, speech, and memory. Their minds disintegrate, and all that seems to be left is the physical form. That, too, rapidly fades. Because of this, we tend not to see them as humans, but as soulless beings in a kind of purgatorial existence before death.
The results of such misconceptions are ominous. I have seen families abandon their once-cherished relatives in the face of dementia. On a larger scale, a news report last year documented that thousands of adults in nursing homes (mostly with dementia) were being given sedating medications when agitated to “suppress behaviors and ease the load on overwhelmed staff.” In other words, these people were sedated because they were too much of a bother. The sedatives they are given can be deadly, especially in vulnerable older adults. Their side effects cause significant morbidity in this patient population. Moreover, physical abuse of older adults with dementia is widespread; some studies estimate rates as high as 18 percent.
The Body and the Mind
Clearly, many of us see these patients as inhuman or formerly human. The wasting of their minds makes them so. Once the mind deteriorates, there is nothing human left—and if the body exists without the mind, without the vis vitae, so to speak, they appear to be merely masses of flesh to be tossed aside.
We act, then, as if the mind and body were two separate entities. When we see demented adults, it is easy to fall into the trap of mind-body dualism. These patients don’t know where they are, they can’t take care of themselves, and they can’t hold conversations with others. Their personalities are different. Their minds are, in some sense, near death. Consequently, we may instinctively conclude, they don’t deserve the basic human dignities afforded other members of our society.
Perhaps we don’t explicitly think through the argument in this way when we treat demented members of society as expendable, but this way of thinking does seem to underlie our poor treatment of these unfortunate souls.
If we behave as if the rotting of the mind means the end of the person, we ought to ask: when exactly does the mind truly die? At what point are these patients inhuman? When they have lost the power of speech? When they can no longer think through a mathematical proof? Where do we draw the line between a mind worthy of treatment as a human being and a mind that is detritus?
As physicians, we see a spectrum of patients with dementia. Some of them function well in society for a period of time, and some of them are so advanced that they are bed-bound. For example, some Alzheimer’s patients are functional enough to write books about their experiences with dementia. Thomas DeBaggio wrote Losing My Mind, an autobiography about living with Alzheimer’s. I also recall the musician I treated who would forget who I was every time I left the room but was able to play the saxophone in concert nearly as well as he once did. Even the patient who could not speak, who howled like an animal in the evening and who could not feed herself, retained elements of the mind that once was. She recognized her husband; she was calmer around him, she even sometimes laughed with him. The mind lives yet.
In fact, I don’t think the mind ever really disappears before death in these patients. In one study out of the United Kingdom for instance, authors used methods of nonverbal communication with a series of demented patients (even those with severe symptoms). They found, indeed, that this communication method, called Adaptive Interaction, “provides a mechanism for people living with dementia who have no functional verbal language production, to demonstrate a desire and ability to communicate.” Yes, even patients with dementia who cannot speak, who―at a superficial glance―appear to have withdrawn from the world, are ready and able to interact with those around them, albeit in an unorthodox fashion. There is always residual function, recognition, and ability. Even in comatose patients, who appear to have no mental function whatsoever, there is some evidence that communication with them can take place.
This demonstrates why the mind-body dualism argument is not practically convincing, aside from its philosophical failings. The mind-body dualists cannot prove that the body lives without the mind. Sure, there are patients who are brain-dead whose hearts still beat, but since the brain influences cardiac function, the heart eventually fails, too. And their bodies, lying in bed without brain function, cannot breathe on their own and have no meaningful physiological function beyond the transient persistence of a heart rate. No, the mind and the body are intimately tied to each other until death, and they pass together rather than separately. There is only mind-body unity, not mind-body duality.
In short, then, I don’t think our reflexive feelings about patients who appear to have lost their mental faculties ought to determine how we treat them. After all, our emotional and reflexive responses frequently aren’t the right responses. We need to think about not only who these patients were but who they continuously are. And if one has a hard time understanding that, look to those who sacrifice every hour of their day and night to care for those they know still exist.