When he was a chaplain at a nursing home in Chicago, the Rev. James Ellor decided to try an experiment. He found a Sunday school book from the turn of the century, selected the most popular hymns and Bible verses from that time period, and designed a worship service for dementia patients, who had been banned from the chapel after new carpet was installed because of their incontinence.
What Ellor discovered has added a new dimension to Alzheimer's treatment: soul care.
People with dementia, it turned out, might not be able to recognize their children, but could remember the first verse of beloved hymns from their childhoods, and many could recite Bible verses they had learned when they were younger, like John 3:16 or the Twenty-Third Psalm.
Moreover, when given the chance to participate in a modified worship service, they would clap their hands joyfully, and they would often hum hymns and recite Bible verses for several hours after the service ended.
"I frequently get greater expressions of the joyful noise of singing from people with dementia than people who don't have it," said Ellor, now a professor at Baylor University in Waco, Texas, and co-director of the doctorate program in social work there.
Over the past 20 years, an increasing number of Alzheimer’s-care facilities have begun to offer worship services, and the response from patients seems to refute an argument voiced by skeptics that dementia is evidence the soul doesn't exist.
That line of thinking, promoted by the late philosopher Paul Edwards among others, holds that what people of faith perceive as the soul or the spirit is nothing but electrical impulses of the brain that deteriorate, along with memory, when the brain is diseased.
Others, however, point to a phenomenon known as “terminal lucidity,” where a person who has been cognitively impaired appears to regain brain function for up to two hours and is able to converse rationally with family members before dying. Such experiences seem to offer evidence that a person’s spiritual essence is hidden, not destroyed, as dementia progresses.
“Some people I respect very much, believers in God and imminent neuroscientists, say we can’t equate one’s level of cognition with the presence or absence of the soul,” said Bryan Auday, a psychologist who specializes in brain research and teaches at Gordon College in Wenham, Massachusetts.
"The soul is bigger than just cognition," he said. This suggests that people who were spiritual before dementia set in have spiritual needs, even if they are no longer able "to practice and feel and commune with God the way they have in the past," he said. "Their faith is not gone."
A gradual unraveling
Dr. John Geyman is a physician whose wife, Gene, a teacher, poet and puppeteer, died of Alzheimer’s disease at age 77 in 2012. Two years after her death, he published a book, “Souls on a Walk,” that tells the story of the couple’s 56-year marriage and the 16-year progression of the disease.
While Geyman, a Unitarian who lives near Seattle, does not subscribe to the Episcopal faith his wife practiced, he says, “Her spirit was with her all her life, even when she couldn’t do things or remember things.”
“Her spirit was alive, pretty much all the way,” Geyman said.
That's what most family members and caregivers would say, according to Ellor, who, in addition to being a licensed social worker, is an ordained Presbyterian minister.
"In 40 years, I've never run into anyone who cared about a person (with Alzheimer's) who would say that the soul has departed, prior to death," he said.
Alzheimer's disease, which afflicts an estimated 5.4 million Americans, progressively destroys thinking skills and memory as neurons die and the brain shrinks. Death typically comes within a decade of diagnosis, and the patient eventually loses the capacity to care for himself or herself.
There is no cure for the disease, named after the German neurologist who first identified it in 1906, and its incidence in the United States is expected to triple by 2050, fueled in part by longer lifespans. Most people with Alzheimer's are over the age of 65, and your likelihood of getting it increases with age, according to the Alzheimer's Association.
Far from disproving the soul, dementia can teach us about the soul and about consciousness, said Dr. Eben Alexander, the neurosurgeon whose near-death experience in 2008 was described in the best-selling book "Proof of Heaven."
"The best way to understand the normal in the phenomenon of consciousness is to examine the abnormal," said Alexander, 62, who lives in Charlottesville, Virginia.
In “Proof of Heaven,” Alexander wrote about a friend, “a hard-core neuroscientist,” whose father seemed to shake off his dementia as death approached.
“He had gotten to a point where he couldn’t utter meaningful words at all,” Alexander said. But in his last moments, the man began having a conversation with what seemed to be his mother, who had been dead for 65 years. “My friend was shocked by his father's ability to rise up to some extremely thoughtful reflections on his life. It should have been impossible, given the progression of his dementia.”
These moments of terminal lucidity, Alexander said, “are very real and common events that prove to us over and over again that the physical brain does not create consciousness." It does, however, act as a filter.
Consciousness is beyond the physical realm, as is memory, he said.
“These descents into dementia can be a very instructive guidebook about the mind-body relationship,” Alexander said.
Excavating for soul
Most theologians believe the soul enters the body at either conception or birth and leaves the body with the last gasp of breath. Dementia does not affect the soul any more than an infant's inability to talk or think logically does, Ellor said.
"The soul is still there; we just don't know how to communicate with it. Every Alzheimer's patient is exactly like you or me, at least spiritually; they just can't communicate on a cognitive level," he said.
Soul care for people with dementia, therefore, must focus on emotion and the senses, not the brain.
In designing a worship service for people with dementia, Ellor employs repetition of familiar songs and readings, and omits a sermon: "I realize some pastors have to grieve the loss," he quips.
It's important to add rhythm when possible, he said. "For those who are no longer singing, the rhythm seems to aid in their enjoyment," he said.
Inclusion of common liturgical elements — phrases like "peace be with you" or "praise God from whom all blessings flow" — seems to resonate with Alzheimer's patients, particularly those from Catholic or Episcopal traditions.
Ellor concedes, however, that enthusiastic participation in a worship service is not evidence that Alzheimer's patients have a spiritual life, nor is there proof that "we have reached the soul" by excavating with "Amazing Grace" and a Bible reading.
"Maybe what we've hit is just memory," he said. And there is accumulating research that memories can be stirred when any familiar music is played for dementia patients.
At Sagewood at Daybreak, a senior community in South Jordan, Utah, residents with Alzheimer’s and other forms of dementia are offered worship services, Bible studies and tai chi, a form of meditative martial arts.
Mindy Smith, the dementia-care unit coordinator at Sagewood, leads the gatherings of usually a dozen or more people. In the Bible study, she employs pictures, like of Adam and Eve or Noah’s Ark, to help people follow along. The services can last as long as 30 minutes, or be cut short if participants’ interest seems to flag, but they’re usually enjoying themselves, and often will start singing dancing, she said.
In addition to providing soul care for the residents, the services also help draw out people who were previously isolated. “Afterwards, they’ll be more engaged in other activities,” Smith said.
Such services can also help patients' families, who are often thrilled to see their loved ones recover some part, however superficial, of their faith, Ellor said.
And there's always the chance it's more than superficial. "Yes, they can forget much of their previous life, and their ability to practice their religion is compromised. But we have evidence that people do not lose their sense of identity," said Auday of Gordon College.
They also seem to retain a sense of what was important in their pre-dementia lives. Ellor said that Catholic patients will often proudly tell visiting family members that they'd been to Mass earlier that day.
Souls on a walk
Dr. Daniel Amen, a neuroscientist whose clinics across the country address memory loss and issues with brain imaging tools, is a Christian who believes the soul is trapped within damaged neurons of the brain when dementia is present.
“Its vehicle is damaged, and, therefore, the expression of the soul is hurt as well. I believe it is freed with death,” he said.
Geyman, the doctor who cared for his wife throughout her battle with Alzheimer's, said the experience did not make him religious; he experienced cardiac arrest years earlier and experienced it as "lights off — no music or voices or angels."
But he does believe "there's more power out there," even if we don't understand it, and he speaks of his wife's soul as easily as he does of the disease she suffered.
The name of his book, "Souls on a Walk," came from a poem his wife Gene wrote called "Soul on a Walk." After her death, Geyman wrote that he had come to wonder about souls, "where they go and what they do."
He doesn't have answers yet, but ends his book by saluting Gene for triumphing over Alzheimer's by retaining her "independent personhood, grace and dignity."
"Whatever the future brings, our souls are together," even though they walk with only one set of footprints now, he wrote.