Portrait of an Elderly Woman by Pietro Novelli

To have seen one case of progressive irreversible dementia, most often caused by Alzheimer's disease in older adults, is to have seen only one case.

In December, for example, I received this e-mail from the daughter of a man recently deceased:

Hello Dear Friends: As many of you know, my father has been suffering from Alzheimer's disease for the past 4.5 years. It has been a long and often very hard road. . . . However, as of 7 p.m. last night, my father no longer has to struggle with the disease that robbed him of every part of his being, except one. He never once stopped recognizing my mom and never, ever stopped reaching out to her and wanting to give her a kiss. No matter how many parts of his personality were lost . . . he always retained his kind, gentle sweetness and his European manners. . . . In the end, things went very quickly for him. He simply closed his eyes and closed his mouth, indicating no more food or water.

This gentleman was in the advanced, terminal stage of Alzheimer's disease (AD), marked by a combination of inabilities to speak, recognize loved ones, maintain bowel and/or bladder control, ambulate without assistance, and swallow without assistance. Most who reach this stage will pass on within two years.

During this period, do these individuals have the capacity to relate to a presence in the universe that is greater than our own? What about their personhood and continued self-identity?

The Human and God
A nonreductive physicalist would argue that while human beings do not possess a nonmaterial soul, they do possess the evolved neurological capacity for relationship with the Supreme Being. Such a relationship is not caused by neurological pathways, but is rather made possible through them. Contrary to the assertions of Carl Sagan and Francis Crick, a nonmaterial soul is not necessary for the religious experience of a Supreme Being to be genuine. Concepts of the Supreme Being and correlative human perception must now be studied neurologically. The capacity for this relationship represents a kind of neurological "phase change" grounded in new knowledge about the organizational development of the human brain.

I have witnessed cases of persons with mild and moderate dementia responding to religious rituals, inspired by intimate prayer, and emotionally moved by religious symbols. In some cases, it appears that the religious capacity may be disinhibited in dementia. Some people who have never been religious appear to become so, suggesting that the neurological capacity to relate to the Supreme Being can be ignited.

As for the advanced stage of dementia, so long as any neurological function exists, one cannot scientifically state that the neurological capacity for relationship with God is entirely lost—unless the person with AD is among those very rare cases in which survival is regrettably protracted to the point of entering the persistent vegetative state. As for the man described by his daughter in the above case, one can only hope that the love of God reached into his life in ways that we may never understand. Religious rituals, songs, prayers, and symbols remain relevant in providing care.

Personhood
Is the person in advanced dementia still a person? There is a persistent bias against the profoundly forgetful that is especially pronounced in modern philosophical definitions of personhood. Only "persons" narrowly defined, it is often argued, have moral standing. Human beings with significant cognitive disabilities would have little or no moral status under such a system. The philosophers of this "hypercognitive" personhood seem to state that if we do not wear the persona dictated by their intellectualist leanings, we count less or not at all under the protective principles of nonmaleficence and beneficence.

The concern of the Christian ethicist about this view is well stated by Stanley Rudman in Concepts of Persons and Christian Ethics, who, after an exhaustive discussion of the disparities in philosophical thinking about what constitutes a person, concludes, "It is clear that the emphasis on rationality easily leads to diminished concern for certain human beings such as infants . . . and the senile, groups of people who have, under the influence of both Christian and humanistic considerations, been given special considerations." As Rudman summarizes, rationality is too severe a ground for moral standing, "allowing if not requiring the deaths of many individuals who may, in fact, continue to enjoy simple pleasures despite their lack of rationality." He is specifically concerned with persons who have cognitive disabilities, whether developmental or dementia-related.

The fitting response to the increasing incidence of dementia in our aging society is to enlarge our sense of human worth to counter an exclusionary emphasis on rationality, efficient use of time and energy, ability to control distracting impulses, thrift, economic success, self-reliance, "language advantage," and the like. We make too much of these things.

Here I would distinguish the heritage of Stoic rationalism from Judaism, Christianity, and other religions. The great Stoic philosophers achieved much for universal human moral standing by emphasizing the spark of reason (logos) in us all. Yet this is clearly an arrogant view in that it makes the worth of a human being entirely dependent on rationality, and then gives too much power to the reasonable.

Religious ethics, however, are generally more truly universal in scope, for even those with cognitive disabilities count under the protective umbrella of "do no harm." Equal regard under the love of God, along with the emotional, relational, and symbolic expressions of persons with even advanced dementia, lead me to reject the notion "I think, therefore I am," and replace it with the less arrogant Christian notion, "I feel and relate, and above all, I am." Deep into the progression of dementia, continuities with the past usually exist amidst discontinuities.

As for the man described in our case study, he was surely a person by emotional and relational criteria, and secondarily, by virtue of having personality. His brain had been severely affected by AD, but clearly a variety of important human capacities remained richly intact.

Self-Identity
The radical disjunction between the formerly intact or "then" self and the currently demented or "now" self, as put forward by some commentators, is simply a misrepresentation of the facts. The reality is that until the very advanced and even terminal stage of AD, the person with dementia will usually have sporadically articulated memories of deeply meaningful events and relationships ensconced in long-term memory. In the advanced stage of dementia, as in our case here, one finds varying degrees of emotional and relational expression, remnants of personality, and even meaningful nonverbal communication, as in the reaching out for a hug. I would argue that only those rare persons in the vegetative state are absolutely gone. This is why it is essential that professional caregivers be aware of the person's life story, making up for losses by providing cues toward continuity in self-identity.

Conclusion
For those who see that all the capacities once associated with the nonmaterial soul have now been at least roughly mapped neurologically, the nonmaterial soul may no longer be deemed necessary. Nevertheless there is solace in knowing that dementia does not eliminate the capacity for a peaceful relationship with the Supreme Being, that the person remains, and that continuities in self-identity can be quite surprising.

Bibliography

See pp. 137-142 of Stephen G. Post's The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying, 2nd edition, The Johns Hopkins University Press, 2000 for cases of disinhibition of religious capacity in dementia.

See S.G. Post, The Moral Challenge of Alzheimer Disease, 1st ed., The Johns Hopkins University Press, 1995 for a discussion on the "hypercognitive" definition of personhood in modern philosophy.

See pp. 47-48 of Stanley Rudman, Concepts of Persons and Christian Ethics, Cambridge University Press, 1997 for discussion of the disparities in philosophical thinking about personhood.