Dementia: Look Beyond the Body to the Soul

Speaking about dementia at the final session of Calvin College’s January Series 2018, John Swinton told the story of a woman in a psychiatric unit.

The woman had been very friendly to people but then, for some unexplained reason, said Swinton, who is an ordained Church of Scotland pastor, the woman became anxious and started marching up and down the halls, mumbling the same word over and over.

In his Jan. 23 presentation, titled “Still Waters Run Deep: Reimagining Dementia and Humanness,” Swinton said the psychiatric nurses and aides on the unit were perplexed and “didn’t know if they should medicate, restrain the woman, or lock the ward.”

It turned out, though, “that one nurse got alongside the woman and walked and started to listen to her. She was able to hear the woman saying ‘God, God, God.’”

Hearing this, said Swinton, the nurse asked, “Are you afraid that you are going to forget God?”

Stopping in the hall, “the woman looked the nurse in the eye and said ‘Yes,’”

The nurse then responded, reassuring the woman: “You may forget God, but he will never forget you.”

Immediately the woman grew calm and was at peace; she experienced shalom, said Swinton, a professor in practical theology and pastoral care at the University of Aberdeen, Scotland.

Swinton said the story of the nurse and the woman highlights how paying attention to one another, especially someone with dementia or Alzheimer’s disease, may be a challenge, but by showing this kind of love and attention, said Swinton, we reflect the kingdom of God.

“Dementia challenges us and gives us the opportunity to care for one another better. . . . We open ourselves to a new realm of possibility,” he said.

For more than a decade, Swinton worked as a registered nurse specializing in psychiatry and learning disabilities. He also worked for a number of years as a hospital and community chaplain.

His most recent book, Becoming Friends of Time: Time, Disability, and the Art of Gentle Discipleship, won the award of merit for theology and ethics in the Christianity Today book awards for 2017. The book was named as “one of the books most likely to shape evangelical life, thought, and culture.”

A few hours after his presentation at the January Series, Swinton spoke at the Stob Lecture Colloquium in the chapel at Calvin Theological Seminary.

Both the January Series and the colloquium were supported by an endowment from the family of Henry Stob, who taught philosophy at both Calvin College and Calvin Seminary from 1939 to 1975, except for when he served in the U.S. Navy during World War II. Swinton will also speak at the three-day Calvin Worship Symposium that opens Thurs., Jan. 25.

In our world today, Swinton said at the January Series, “dementia is a socially and culturally devalued condition. As soon as someone has a diagnosis of dementia, their friends start to leave because they are seen as no longer of value.”

In North America and Europe especially, Swinton went on, “people prioritize intellect and reason. . . . When someone has dementia, the common assumption is that you are not the person you used to be.”

The key for Christians, he said, is to look beyond the body to the soul, to the heart of the person with dementia. Because a person can no longer verbalize their memories doesn’t mean that they have no memories. It doesn’t mean they are less than human or no longer a child of God.

“We can’t assume that being unable to recall things is the only dimension of the person,” he said.

For that matter, Swinton added, studies show that memory remains in many people with dementia. Certain kinds of music, for example, can help someone with dementia recall — if only briefly — events or people from an earlier time of life.

“Sometimes the brain can create new pathways to get at memory, and music can help access that space in which there are emotions of love, loss, a multitude of things,” he said.

Just as that nurse walked alongside the woman mumbling one word over and over, a person can remain close to a loved one with dementia and be there when something like music brings back a memory.

“Being with someone when that happens is a beautiful but painful gift,” said Swinton. “When you think in these ways, you open up a new realm of possibility” for yourself.

In doing this, we use our imaginations to see beyond the disabilities of the body. We can lament the losses we experience in seeing a loved one live with dementia.

But, said Swinton, we can also see “that we are all human beings created and brought into existence by God.”

We may lose aspects of our bodies, he said, but “we still have our souls. . . . In the middle of brokenness, something can happen, and we can turn to worship. We can express that brokenness to God, who gives us hope even in the most difficult situations.”