Alzheimer’s is a progressive disease that over time robs the person of their selfhood. Eventually the advanced Alzheimer’s patient lives in a world of discrete, fleeting moments. The former self is obliterated and all of the personal connections to former loved ones are forever lost. The current self or the “now-self” is self-contained in each passing moment so there are as many selves as there are moments. From the onset of diagnosis a patient may live for as few as 3 years to as many as 10 or more. Much depends on the age of the patient and the comorbid conditions. But it is important to make clear: Alzheimer’s is a terminal disease for which there is no effective treatment to abate the progressive symptoms or to prevent or slow the mental and physical dying process. Though death does not occur until the whole human organism ceases to function, death must also, at least partly, be understood as the gradual dying of that unique personal self. This includes the higher brain functions that allow humans to be their uniquely personal selves, with personalities, habits, loves, careers, causes, values, characters, and so on. When these aspects of the patient begin to wane, there begins the gradual loss of “critical interests”—those personal aspects of one’s life one controls as an autonomous, social human being and moral agent.
Yet, the loss of critical interests or what we might call rational selfhood, do not necessarily entail the simultaneous loss of “experiential interests” that are connected to purely biological functions. The Alzheimer’s patient may continue to have a robust interest in food, drink, music, social interaction (even without recognizing the person with whom she is interacting), sex, and so on. Patients with robust experiential interests but no critical interests may eat hearty meals and be social in very new ways, sometimes with intimacy, with people they never knew before. But at some point in the course of the disease, even those experiential interests begin to wane and eventually disappear. At that point, patients with Alzheimer’s no longer are able to feed themselves or care for themselves in any way. In fact they may be totally puzzled having food in their mouths, not knowing how to chew and swallow, or having to go the bathroom. They live in a world where they cannot comprehend what is happening to bodies. For many, the possibility of losing all of one’s critical interests as a human being and being left with only experiential interests is terrifying. So how does one plan one’s own medical care during this time?