John Swinton’s book Dementia: Living in the Memories of God gave me some needed perspective on personhood for which I had been searching.[1] Conditions that affect our sense of self are deeply challenging, and the responses and explanations are, at times, equally unsatisfying.[2] In this article, I want to offer some reflections that are inspired by his book. I specifically want to encourage us with the conviction that we as ministers, theologians, and Christian leaders have something important to add to the conversation.

One of my core convictions is that everyone deserves to be shown compassion, dignity, and a listening ear. My belief is grounded in my faith and understanding of what it means to be made in the image of God. It is a simple starting point about personhood but one that is often challenged by life. What does it mean to be a self/person, and can we lose it? How we answer these questions has direct implications for ethics, ministry, and how we treat people.   

We often describe diseases like dementia(s) with phrases like “loss of self.” However, that language never quite sits right with me, and I have heard many wrestle with that same tension. Consider these two statements:

“It’s okay. I know that’s not really him anymore. He left a long time ago. I said my goodbye.” 

“I know she is still in there. Today she actually told me, ‘I love you.’ I’m just thankful for those small moments when they happen. I want others to understand what I know. She’s still there.”

I hear both sentiments from families, and both thoughts are natural as we grieve the losses of role, relationship, functionality, dreams, and image. Yet, there is often a part of us that believes our loved one has not completely faded away. We need some solid ground to reflect on this tension. Do we really lose our self/humanness? 

Swinton surfaces the assumptions given to us by other disciplines that determine our starting point for discussions. Most conversations on dementia, for instance, begin with clinical definitions on the types, causes, and symptoms. We begin with our focus already on the deficit, the limitation, and the disease. Those facts are useful for their own purposes but do not particularly help us with our questions about personhood and loss of self. Loss of self assumes that we all agree on what a “self” even is, but we do not. Many approaches unintentionally define a person by their physical and mental decline. 

We must re-start by considering the nature of the self. Some approaches give us criteria based on our capacities (our mental faculties, for instance). However, I am uncomfortable with the implications of what it means for us when we lose those faculties. Thankfully, Swinton presents the social model of self by psychologist Steven Sabat as an alternative. Sabat proposes that our self is primarily relational and consists of three aspects.[3]

1. Self-1: personal identity and experience of self in the present moment

2. Self-2: physical and mental attributes and personal beliefs about those attributes 

3. Self-3: the way one presents or is represented in the world

I appreciate this model because it saves us from defining ourselves by our abilities. It reminds us that our self/personhood is dependent on more than just our own perceptions or deficits. In fact, self-3 is strongly dependent on our outside relationships. The social model of self brings us closer to a strong definition, but it has one flaw. We can still lose aspects of each of these selves. Even self-3 can diminish through isolation. This dilemma is where we as ministers, theologians, and Christian leaders have an important contribution to make. 

We believe that in God we “live and move and have our being.”[4] We also believe that all things hold together in Christ – the image of the invisible God.[5] Swinton argues that part of what it means to be a person is to be dependent and contingent.[6] I believe this means that we have free will, we can make substantial decisions, we can endure injury, we can sin, and we can be held responsible. However, at the end of the day, we rely on God for our breath, soul, and being. 

There are many threats that attempt to tear our sense of self apart, including cognitive disease. The only agent or “mechanism” that can preserve us and hold us together is something exterior to our inner self and something more enduring than our limited relationships. We believe this is God. When our faculties become faulty, our relationships shrink, and our memories fade, our being is held in the memories of God. I believe that is a deep picture of hope. 

1.  John Swinton, Dementia: Living in the Memories of God (Grand Rapids: Eerdmans Publishing, 2012).
2.  Topics like dementia are important to me because it is an experience that touches many, including my own family and friends. Perhaps another reason I am drawn to this topic is fear. When I pull back the curtain of my collected demeanor, I am afraid to lose my sense self and my mental faculty. Can you relate?
3.  Swinton, Dementia, 94.
4.  Acts 17:28.  
5.  Col 1:15-17.
6.  Swinton, Dementia, 161.