Spirituality and Dementia

This week I am still mourning the death of a friend of many years. By current standards of longevity, Jack was not old when he died; his life was cut short by Alzheimer’s disease, that terrible illness which continues to afflict so many people.

Some four million Americans currently suffer from this disease, despite the intermittent progress achieved by scientists trying to discover a cure or a means of prevention.

Like others whom this disease has hit, my friend gradually lost the ability to think logically and to recognize other people. With the loss of memory, Jack eventually could no longer function on his own.

In time, he became resident in a special ward in a Veterans’ Administration hospital so that he could receive skilled professional care. Little by little, the disease broke down his body’s defenses until he finally succumbed.

Alzheimer’s disease and other related dementias, in addition to posing challenging medical questions for doctors and research scientists, also raise vital spiritual issues for all of us. When patients lose all mental ability to function on their own, what do they have left and how should they be treated?

The temptation is to think of them and deal with them as if they had ceased to be persons. In a society that tends to esteem people to the extent that they do something of monetary value, we can consider those afflicted with dementia as of no account and, moreover, a drain on the nation’s resources.

I am glad to report that my friend Jack’s family members and friends did not respond to his illness in this way. They continued to treat him as the unique person he was and showed him love and affection.

A colleague and friend, Stephen Sapp, has written insightfully about the spirituality of relating to people with dementia. A professor at the University of Miami and an ordained Presbyterian minister, Dr. Sapp has clearly reflected and, I suspect, prayed deeply about this subject.

His first bedrock principle is that all humans are “created in God’s own image and are worthy of respect and protection, especially those who cannot care for themselves or who do not measure up to the world’s standards of value.” Even if we cannot, or can no longer, produce anything or even think rationally, that does not make us any the less deserving of reverence.

Professor Sapp identifies several mistaken notions behind the common American negative attitudes toward people with Alzheimer’s.

First, if people are impaired in one way, we tend to judge them as deficient in many ways, even making of them deficient persons. Just because a person cannot remember names, for instance, does not mean they cannot profit from spiritual exercises. They may recognize in familiar words and sacred actions support from God in their struggle against the dark forces of their disease.

A second tendency is to judge declining brain ability as eliminating the person’s character, personality, and preferences. That can lead to ignoring patients’ lifelong taste for certain foods or other pleasures.

Another fallacy is to assume that the actions of people with dementia are meaningless. Some actions, apparently nonsensical, may have a significance for a sick person, except that we do not know what it is. A patient who wanders may in fact be seeking to perform some action that will guarantee his or her safety.

One woman with advanced Alzheimer’s used to scream loudly every time nursing home attendants took her for a bath. No one could figure out why that was happening. The water was not cold and she was not in pain or suffering for any other obvious reason. Finally, someone figured out that she was screaming because the door to the bathroom was being left open without regard for her dignity.

Ultimately, we do not know what goes on in the soul of a person with dementia. On the surface, only confusion may show but that does not mean nothing positive is happening inside.

There is no denying the terror that Alzheimer’s brings, but maintaining personal respect and reverence for the soul and body of the person afflicted brings us closer to the mystery of that person’s experience. And it may lead toward a spirituality that gives us the courage and insight to cope with a difficult situation.

Richard Griffin