What dementia teaches us about the soul

Dementia patients have a lot to teach us about the soul.

I am reminded of interactions with my grandmother. Throughout her life, she would often sing at random times while she was cooking, cleaning, or simply walking about the house. She would sing songs — songs of faith. She would often sing songs like "Amazing Grace," "I’ll Fly Away," and other great hymns she was raised with. When she was old and her memories and her body were fading, she persisted in her habits of singing. While she did not have dementia, observing her revealed much about the nature of the soul of which several studies are confirming: there is more to the soul than we originally thought.

Dementia is the term that refers to the process of intellectual or mental deterioration. Dementia patients experience intellectual malfunctioning in varying ways and to varying degrees on a sliding scale. Typically, when it begins, cognitive functioning continues to worsen until the person no longer remembers self, past experiences, or basic identity markers to our daily conscious experience.

So ingrained to our common experience is the stability we derive from our memories of the past. In other words, those events, experiences, and relationships that make us who we are. They provide stability to us and to our shared reality with others. Our fear is that we or the ones we love are gone when they have lost their memory. This is undoubtedly why memory played such an important role in the history of philosophy. As with Descartes, it was through his memorial awareness that he was able to arrive at a knowledge of self. And, it is on some accounts of John Locke that personal identity is the continuity of our memories. So, when we lose our memory there is a tendency to say and think, “she’s gone,” “she’s no longer with us.” But as author Katherine Applegate in The One And Only Ivan, describes memory in the following: “Memories are precious … They help tell us who we are.” No doubt memories do help us know who we and others are, but they do not make us who we are. This is something theologians John Swinton and Tricia Williams help us to see about the nature of persons in their theology of dementia. 

Theologian Tricia Williams raises one question about dementia patients in her recent work, “What Happens to Faith When Christians Get Dementia?” Following in the footsteps of her mentor, John Swinton, she examines the testimonial evidence of dementia patients and what it reveals about their faith journey. She finds several common themes that provide a basis for practical ministry to dementia patients. What her findings reveal raises numerous questions at the intersection of faith and science.

At the center of these questions is the notion of identity. What does it mean to be me when I can’t recall that I am me or that I don’t recall basic facts about myself? This stands behind what is often seen as the core of other issues in one’s faith journey.

First, these testimonies raise questions about the nature of personal identity. What Williams's research tells us is that dementia is a spectrum of fading cognitive capacity, but it begins with persons who still remember their past, experiences, and relationships. In numerous encounters, they struggle to recall the facts, which makes the conversation difficult.

But, Williams presses the point about faith. These patients at varying levels can recall their faith. One of her patients, Alice, could recall her relationship with God even late in the process of dementia. She recounted her faith journey as something more lively and real than even prior to her time of dementia. In a similar way, the above story reveals something more going on than mere memory.

It reveals something about faith and personal identity. There is more going on than the memories had and lost. This shows us, arguably, that that person is still present. There is more to her than her ability to recount items in her memorial recall. There is more to her than her failing body and brain. She continues despite her intellect failing.

In philosophical discussions, philosophers would say that the fact that the person continues despite bodily failures and cognitive loss suggests that there is something other than the body, brain, or thoughts comprising the memorial — what some would call a soul.

The soul provides the stable identity of persons on which narrative identity depends.

Second, the testimonies raise questions about individual faith in spiritual development. Williams's studies suggest that spiritual development continues even after memory loss, and, more, that one’s development stays with him or her even when memories fade. The relational dynamics, and spiritual practices that have shaped one throughout life impress a certain structure of habits and patterns that do not depend on functioning memory.

Third, the testimonies raise questions about the nature of a redeemed identity. This raises the question about who we are as those in relation to God. If my identity in relation to God or the Church is not dependent on my conscious awareness of those facts, then it points to something else that transcends my memories and makes me who I am. In some cases, they retained prayer lives. Even the habitual response of singing was present.

Fourth, these testimonies raise questions about caregiving. If dementia patients retain their personhood rather than losing it when they lose a part of their body or their cognitive functionality, then that has implications for how we think about the care of dementia patients.

This is so because as some would say life is a liturgy. We all have liturgical rhythms and those rhythms are bodily practices that acquaint us with reality in a distinct way from what we often experience when we study something intellectually. And, how we practice our liturgy builds pathways in the soul (not just the brain) that stay with us. This is why anyone who has had a child knows that while they may not have the intellectual capacity to articulate their faith, it doesn’t follow that nothing spiritually is going on in the life of the child.