The Person Who Remains

MY MOTHER LIVED WITH dementia for more than 20 years. My family members all experienced grief that was deep and complex, yet there were surprising moments with Mom that I found profoundly spiritual. As I spent time with her through the stages of her Alzheimer’s, I experienced a few times when she reached a place more complex and lucid than our understanding of her medical condition might allow.

As a scientist with an interest in chaplaincy, I wondered: What is known about this intersection of dementia and spirituality? What does the church say about dementia? How might all this inform our ministry to those experiencing dementia?

“Dementia” itself is a difficult word. Its origin comes from “de-” (undoing) “mentia” (mind). Already this label stigmatizes a person. A preferred term might be ADRD: Alzheimer’s Disease and Related Diseases. Alzheimer’s is a brain disease thought to cause some 60 to 80 percent of dementia cases. Related diseases include vascular, frontotemporal, and Lewy Bodies types of dementia. All have symptoms of memory loss, cognitive loss, and eventually physical loss (such as the inability to walk), caused by progressive damage and death of brain cells.

No one knows the root causes. Our language will become more accurate once medical science gets a better understanding of these diseases. In the meantime, dementia is the term that most people know. It does not mean the person is crazy (demented). Despite the progressive deterioration of the brain, there is much that remains at each stage.

In The Moral Challenge of Alzheimer’s Disease, bioethicist Stephen Post suggested that the stigma concerning dementia results from our society’s overvaluation of rationality. Our modern attitude, stressing rationality over other human attributes gifted by God, has roots in early Christian theologians and secular philosophers from ancient Greece through the Enlightenment, as well as our culture of contemporary science. In Plato’s description of three parts of the soul, reason is the charioteer controlling two winged horses representing good and evil impulses.

Early Christian theologians generally attributed the image of God ( imago dei) in humans to the mind/spirit or soul, which was ranked higher than the body. Basil said that “the rational part is the human being.” Augustine believed the mind has two parts: “The higher part contemplates eternal truths and makes judgments” and God communicates with us through it. French philosopher René Descartes further emphasized the supremacy of rationality with his dictum “I think, therefore I am.” Many of us today still fall into the Cartesian idea that the rational part, thinking, defines “who I am.”

Rationality is important, but rationality as a determinant of the status of personhood is greatly problematic. When a person develops dementia, are they less of a person? Do they lose their connection to God? Conscious or not, such beliefs can create harmful scenarios for people with dementia. Seeing a person as “less than” promotes an attitude of stigma that raises the general populace’s fear of these labels and categories.

Contemporary theologians have developed a more balanced view of what makes us human. In Eccentric Existence, theologian David Kelsey proposes that the basis for the value and relationship of the human being lies in God, that is, outside the human beings themselves. Kelsey says that personhood is “a status before God” dependent on God’s relating to who I am (a vertical orientation) and others’ relating to who I am (a horizontal orientation). “Personhood is not even a function of how we relate to God,” Kelsey writes. Our “personhood is entirely a function of how God relates to us in creating us ... and hardly at all from anything else.”

God’s relating to us is surely not lost in dementia or any illness.

According to Kelsey, other qualities beyond rationality make us human, including emotion, love, spirituality, awareness, and courage. These traits have been observed in people with dementia. Philosopher-theologian Nancey Murphy points out that when a person is viewed as an individual, which our culture tends to do, their value becomes reduced with an illness, but if they are viewed as part of the household, as in the original Hebrew tradition, they maintain their standing in the “psychical whole.” Looking back, I realize that despite my mother’s illness, she was the center of the family until the day she died.

Indeed, we value infants, and infants are not rational. We are all dependent at times. We are all limited. Most of us can’t memorize 100 numbers or recall everything that has happened to us in the past. Our ability to remember peaks at age 25; every decade after that, we lose 5 percent of the cells in our memory center, the hippocampus. Perhaps those with dementia remind us of our limitations and that makes us uncomfortable. By the standard to which we hold people with dementia, we are all “de-menting” to some extent.

The mind and the spirit

With aging also comes the opportunity to develop other ways of knowing and being, particularly concerning our spirituality. What effect does dementia have on spirituality?

Dementia can land a person squarely in the present. Memory may be gone or unreachable, and planning for the future may also not be possible. The hired caregiver who saw my mom every day once told me, “I should pay you to see your mom! I feel so good when I leave; she is so in the moment.” Zen-like, Mom would notice whatever was in her sight and appreciate its beauty—clouds, a coffee cup, even a plastic flower. It made me feel good, too, to spend time with her.

Studies show that when a person’s executive functions, such as planning and problem-solving, are repressed due to damage to the brain, their spiritual functions can be enhanced. Vietnam War veterans with bullet wounds to the front, executive part of the brain reported more spiritual experiences than those with bullet wounds elsewhere in the brain. Think about the practice of Buddhist meditation: As the monks meditate, they are inhibiting their executive functions, telling themselves to clear the mind and allow “being” not “doing.” This practice allows the spiritual—for example, a feeling of oneness—to arise.

The same might be true if the executive function area is damaged from ADRD. At a time in the progression of Alzheimer’s when my mother was no longer articulating sentences, she once said (with perfect fluidity), “I know he knows me.” I could only make sense of this if the “he” referred to God. Despite what we would characterize as her condition of chaotic confusion, to be so certain and lucid that God knew her is an astounding pronouncement. I was in awe at the quality of her aliveness and wondered what experience had moved Mom to say this.

Through brain imaging, researchers have found that no one area in the brain is responsible for the “self.” Different areas are responsible for our autobiography, for recognizing our face in a mirror, for what we think about ourself, for our talents, our demeanor, our morality, and so on. Dementia cannot fully remove this self. As my mother once said with difficulty, but very clearly, “I’m still the same.” That was important for me to understand, and it helped me to respect her personhood, no matter how the dementia had progressed. She perhaps understood more than I had given her credit for. We cannot know all the subtleties the person with dementia is experiencing.

Spiritual activity also is manifest throughout the brain. Attempts to find a “spiritual center” or “God spot” in the brain have failed. Correlations of brain scans with spiritual experiences depend very much on the nature of the experience. During meditation, areas of the brain involving focus and emotion light up. Feelings of oneness or unity with God or the world light up a different area of the brain. So damage due to dementia cannot fully remove spirituality (and could in theory enhance it).

What about the reverse? How does spirituality affect dementia? Tapping into spirituality might help people cope with their condition. Many studies in medical and hospice literature show that spirituality improves patient outcomes. The fruits of the spirit—faith, hope, and love—are simply good for humans on many levels, including the physical and mental. Further, awakening old memories can actively help the brain. Reminiscence therapy—the discussion of past activities and events often using old photographs or objects—is based on this.

Memories of music from our youth can survive Alzheimer’s well into the late stages. Studies show that the location in the brain identified with this early music seems to be skirted by the damage of Alzheimer’s. So, as shown in several famous videos, music can sometimes “awaken” a person. Even in late-stage Alzheimer’s, Mom and I used to “dance” with our hands to a favorite song of hers, “Pennsylvania Polka.” When I let my hands relax, she would keep the dance going, moving our hands in perfect time to the music.

For those raised in church, hymns will often remain important touchstones. Familiar hymns, scriptures, and prayers from a person’s very early age can stimulate the brain and enable it to function better for a while.

Perhaps more important, there may be opportunities for a person to continue to grow in their closeness to God. As in any ministry, we are there to “re-mind” the person of God’s presence and love.

Sustaining love and practical presence

There are more than 5 million people in the U.S. with Alzheimer’s. Most are living at home—you probably see some of them every day, more than likely escorted by a family member or hired caregiver. If there is no cure, the number is expected to triple by the year 2050 with the growing number of aging baby boomers. Aging is the largest risk factor for dementia.

Churches, already filled with older adults, will see more people affected by dementia. The church is uniquely positioned to bring the gospel to bear on the challenges of dementia. We have not been made in a spirit of fear but of power and love. We know that nothing—no illness—can separate us from the love of God. When Jesus invited Peter to walk on water, he wanted to see Peter’s trust. We too are called to the promise of Jesus—that he will be with us. We can walk forward with dementia, or any other illness, with faith that God will sustain us always.

This good news can serve those with dementia and their loved ones. This is a devastating illness; losses start with something as simple as the telephone, then financial management, health care, home, travel, church, walking, possessions, feeding oneself, continence, friends, and family. As in ascetic practices, just when it seems everything is gone, there is yet another loss. The financial burden to the individual, family, and society is great. Isolation of the person with dementia and the care partner can lead to a spiral of loneliness and depression, which further exacerbates the negative symptoms of the dementia and can create illness in the care partner.

Embracing people with dementia in church demonstrates that the church includes those who have been pushed to the margins. It testifies that the church will stay true to its mission and ministry to the end of life. It says to every parishioner: You are welcomed and embraced, even with your frailties.

We all need to hear this. And the community is essential to help the person with dementia maintain, and experience, their valued presence as part of the whole body of Christ. Just as we stand in before God for infants at baptism, we need to stand in for people with dementia.