Dementia as a Religious Problem
“The demented you will have always with you” is not a saying of our Lord that I recall. Yet it fits the 21st-century condition of our lives. Dementia is a grimly stubborn and growing statistic in the unfolding story of our aging society, and it raises at least three issues for thoughtful Christian persons.
They are: decision-making at the end of life, the psychological mix of feelings and frustrations involved in care for the demented, and the nature of a distinctively Christian response to dementia.
Among certain high-profile scholars writing in medical ethics over the past quarter century or more, decision-making at the end of life has received by far the greatest amount of attention. Many put great weight on a demented person’s declaration of preferences before she became demented. Others find this over-simple. They point to the radical change in personality that dementia may bring – to the point of a true change of identity. If this is not the same person, how can previous choices of another person be binding or relevant?
Other arguments seek to clarify the nature of our own decision-making about the demented person’s care and condition. One issue in play is the contrast between powerful moral theories about personhood and our own moral intuitions about the demented. Kant, for instance, places the value of persons in a class by itself. To be a person means to have the capacity for moral responsibility; the signal is our sense that praise and blame are appropriate for the individual concerned. Yet because in dementia one gradually loses the capacity to take responsibility, the demented individual ceases, at some point, to be a person. One’s moral status is diminished, and it becomes logical to seek to identify that point at which one is no longer a person.
I think our basic intuitions should trump theory. Among other reasons, it has proven remarkably difficult to identify criteria or standards persuasively that must be flunked if a person is to fall out of the moral security of personhood and into a lower level of moral status. A lot of human beings, demented or otherwise, would flunk out.
All the same, I believe a person’s mental capacities are relevant to decisions that should be made about her care. The reason is simple: the way a treatment is perceived is a significant part of what the treatment is. To take an example from another stage of life: the fact that my granddaughter doesn’t like injections for an infection doesn’t mean she shouldn’t have them. Her perceptions are short- sighted, we might say. We can be certain that what we are doing is in her best interest even if she hates the prospect. Suppose, however, that the discomfort of the injections is not of short duration or minor but serious and stretches out over weeks, months, or years. At that point most parents or guardians would factor her perceptions and feelings into the judgment. That a treatment will be perceived as torment must be taken into account in treatment decisions. This has been a recurrent theme in U.S. court decisions on end-of-life care.
Dementia is Scary
Yet treatment decisions are really only a small part of the moral problems presented by the demented. Dementia endures. It is not a problem that can be eliminated from the human community, any more than one can simply ignore or eliminate a sibling, or skip being a teenager. God willing, we will be able someday to reduce dementia’s incidence and destructiveness, but in the meantime our personal and social problem is to learn how best to live with it. That meantime seems an eternity to those whose lives have been engulfed by it, and the end of dementia is a long way away from us.
The hard physical work of caregiving, largely done by unpaid wives and daughters, is only the visible tip of the iceberg of the problems of care. To start with, the demented are scary. They don’t listen to reason. When my mother – residing in an assisted-living facility a thousand miles from my home – was uncomfortable with the fact that the facility couldn’t feed me when I visited because there was no space, she wanted to go out to dinner together. I’d have loved that, but in fact there was no suitable place within a reasonable distance. I tried to explain this to her, but to no avail. Finally we went out together to a Subway in a disreputable neighborhood. She hated it, and with good reason. I’ve always been ambivalent about that memory. In my more sensitive moments I feel I was cruel. In others I allow myself to feel that I outmaneuvered her for once in 60-plus years! My example may be poor, but anyone who has spent any time at all with a demented parent or spouse will recognize the irrationality I am talking about. In my case a mother’s love remained after reason gave out, but what if the questionable decision about the restaurant had led to serious bad consequences?
Not only are the demented frightening. They trigger embarrassment, shame, and guilt. I never concluded my regular visits without feeling guilty that I wasn’t doing more. When space allowed, and Mother and I were able to go to dinner in the main dining room, she would regularly announce to anyone and everyone that she didn’t remember them. I wanted her to shut up; no one would know this lapse of hers if she didn’t broadcast the fact. I forgot just what a candid and pathologically open person my mother was, failed to recognize that she was being herself. This humiliated me, and I was embarrassed for her too.
I came to the conclusion that as a practical matter the best thing I could do was to be good company for Mother. I might have my own histories of guilt and disappointments, gratitude and embarrassment, fear and sorrow, but there was no going back and reliving the relationship or pretending she was not now different from what she was. What she needed from me, I thought now, was to be told that I loved her, to be cheerful and helpful, to talk and to listen, to kiss her and hold her hand.
And also to do what biomedical ethicist Bruce Jennings has helpfully called “re-minding” by reminiscing about our times together over 70 years, and helping her to remember. Mother remembered three things to the last. One was the nursery rhyme “One, two, buckle my shoe” – although we always got stuck at “15-16.” Another was the fight song of the Logansport (Indiana) High School (from which Mother had graduated at 16). Mother had a good voice to the end, but I can’t carry a tune in a shovel so our singing this together was comic. Finally, as the last surviving of seven Depression-era farm kid siblings, she was very proud to be able to recite all their names in correct birth order.
In a 24-hour visit we probably went through these texts 30-40 times, but it helped the work of bonding, morale, and reinforcing the mind she was struggling to sustain and to re-mind.
No one who has these caregiving experiences can avoid the question “why her?”, which is pretty inseparable from the question “why me”? It’s the difficult moral question of natural evil. As a chaplain once told me: “I’m ministering to two births – one child will live seven minutes and the other 70 years. Where’s the justice in that?” The arbitrariness of these fates – a child struck down, a beloved family member’s decline into dementia – makes it hard to believe that God is either caring or just. A coherent framework of meaning is shattered. Anyone who claims to have a quick answer to that theological puzzle simply disqualifies him- or herself as a serious Christian.
God and Suffering
When we start with a conceptual scheme and then try to fit suffering into it we have things backwards. We shouldn’t first develop a Christian theology and then treat suffering as an intellectual puzzle. Rather Christian theology and ethics must begin with recognition that God has identified Godself in Christ with every form and kind of human suffering. Christian faith can’t make much sense to those who haven’t suffered somehow and in some way. Suffering isn’t an afterthought. It’s the starting point: it’s what makes piety and therefore theology important. As we suffer we are not alone, but aligned with God.
In the real world suffering is inescapable. But suffering isn’t the last word about human existence. Life and love are. We live in the hope of the resurrection. The ritual of the Eucharist walks us through the cycle of death and rebirth into community with God. It gives all and only what we are promised, and in that sense it is highly realistic. Piety and worship precede theological construction. It can provide help to caregiver and the beloved demented alike. It reminds us that the most important thing we can give to each other is presence.
The best things that Christians can do about dementia involve being present, welcoming, and listening. Many of the relevant skills are not high tech – but they do require character. We hold hands, sing songs, listen and care as best we can. We are the best vicars of the Christ who embodied ministry to the lonely and broken.
David H. Smith ’64 B.D. is a Yale senior scholar in theology and medical ethics and a senior lecturer in political science. He was director of the Interdisciplinary Center for Bioethics at Yale from 2007-2011 and was director of the Poynter Center for the Study of Ethics and American Institutions from 1982-2003. He is the editor of the 2010 book Religious Giving: For Love of God (Indiana).