Having spent years learning the neurobiological underpinnings of dementia, I found myself frustrated when all my knowledge of pathophysiology didn’t really help my patients live better lives (not really) nor their families care for them well. Something was lacking. Seeking to bring theology to bear on the crippling condition of dementia, John Swinton writes in Dementia: Living in the Memories of God, “Dementia is a communal and relational condition that involves but cannot be defined by neurological decline.” Here I glimpse what was lacking my prior education.
He doesn’t deny the neurobiology of dementia, but broadens our understanding of what it means to bear the diagnosis. Having cared for numerous people with dementia (and sat, sometimes helplessly, with their families), I found such an approach compelling, and I devoured the book. If your interest is piqued, I offer one caveat: while comforting and eye-opening, it is academic and not devotional in its approach. It is a book that will help inform the broader conversation about churches and dementia, but may not be the choice for a spouse who is exhausted by the care needs of their loved one. For them, I’d recommend conversation, counsel, and prayer before any books.
So, with that in mind, how does all this work?
Swinton argues that “any diminution of the self is first and foremost a diminution of community. The self is an individual and a communal process, not an individual, inner possession or state of mind. A person does not lose her self; her community loses her. If this is so, then dementia is much more than a neurological disease which occurs within the brains of discrete individuals. … Dementia is both the product of damaged neurons and the experience of particular forms of relationship and community.”
This resonates strongly with how I’ve seen dementia impact both the people who have it and those around them. Like so many other illnesses, the diagnosis is born most directly by the person with it, and also by those who love them. Without acknowledging this and instead expecting that lives will improve merely with pharmacologic manipulation, everyone (clinicians, families, patients) will become frustrated as relationships, expectations, social rhythms, and spiritual health all fall into disarray.
So, too, is harm done to those with dementia and those around them when our subtle beliefs about what makes a person come to the fore: “She died long ago,” we might say of someone with severe dementia. “He is just a shell of who he once was,” we lament as we reflect on all that dementia stole from a man. These are practical applications of that old philosophy, “I think; therefore I am.” When we pause to consider it, though, is that true? Do we exist because of our thoughts?
Over the course of the book, Swinton argues that we have come to perceive people with dementia as less than persons because we have an idea of what a person “should” be. He grinds through various criteria, including one’s intellect and even relationships, to demonstrate that for the person with severe dementia who has no one in their life, such criteria would leave them bereft of their personhood – and, given the malignancy of how we position people in society, it sometimes does in practice. He then arrives at his proposal: we are not persons because of how smart we are, how creative we are, who in our life cares for us, or any other creaturely marker; we are persons because we are created by God to be persons.
Swinton offers a helpful word here by reconceptualizing what it means to struggle with memory. After all, we all struggle to remember who we are and who God is, and we are not entirely accurate in that endeavor. Time and again, God calls his people to remember what he has done, and sometimes they’re successful or sometimes they’re not. Only God remembers who we truly are with perfect steadfastness. Whether someone has dementia or not, we live more fully in God’s memory than we do in our own. This offers tremendous hope for those who struggle with their own memory and those who are close to them.
We can, and should, mourn our personal loss of memory. But if God remembers us, we are provided with a source of deep and enduring hope. We are not what we remember; we are remembered. Memory is first and foremost something that is done for us, rather than something we achieve on our own.
Not only is this a word of hope for people with dementia and those who care for them, but also their churches. People with dementia can be and are perceived as strange; they are the quintessential strangers, who become strangers to the world, to those who love them, and even to themselves. Still, Swinton continues to draw similarities between those with dementia and those without, arguing that, “The vocation of Christians is to live lives which change and transform the world without themselves being polluted by the values, perspectives, and assumptions of the world – to live among people but not to become like them. In other words, to be a Christian is to live as a stranger.” Christians should be well-positioned to welcome people with dementia because they, too, have experienced strangerhood.
The life of a stranger isn’t easy, and managing the tension between overcoming and maintaining strangerhood isn’t easy either, but it is the call of a people who were once strangers to God and have since been adopted into his family:
…like other crucial aspects of the experience of dementia – memory, mind, identity – such faith in the face of affliction cannot be achieved alone. Overcoming the alienation, isolation, and enforced strangerhood that accompanies the experience of dementia cannot be done without friends and without a community that has learned to recognize the value of strangers, and that can acknowledge the reality of the experience of affliction and, in so doing, bring healing and new hope. Affliction can destroy love and force us to look at people in the wrong ways. Affliction is a breeding ground for malignant social psychology and negative positioning by self and others. What is required is a community that can offer empathic hospitality to strangers, a community that truly sees the experiences of dementia (for carer and cared for) for what they are … a community that has the time and the resources to move people from affliction to hope: from strangeness to belonging.
In welcoming people with dementia, churches become bastions of radical hospitality:
The key point is that the object of extending hospitality to strangers is to stop them from being perceived as strangers, not just to offer them welcome. Offering hospitality to those who have been made strangers is thus not simply a warm, charitable thing to do (although it can obviously be that). It is a radical invitation designed to strip persons of their current role as strangers and reposition them as valued members of a community that understands strangeness (because in many ways it is itself strange). The intention is not to continually minister to people with dementia as if they remain forever strangers. The intention is to welcome them in such a way as to overcome their strangeness and empower their status as friends.
In this endeavor, our hope would snuff out if we fueled it with the expectation that, by our own cleverness or creativity, we would sustain relationships that are always at risk of fading back into dusty obscurity (dementia or not). No, our hope burns with the fuel Jesus has graciously provided us:
“I think; therefore I am” is replaced with “We are because God sustains us in God’s memory.” Our hope lies in the fact that we are living in the memories of God. As long as God remembers us, who we are will remain: “I will not forget you. See, I have engraved you on the palms of my hands” (Isaiah 49:15-16).