Dementia: Living in the Memories of God

This book is dedicated to my friend Peter Barclay. Peter, you may, for now, live in the land of forgetfulness, but you are not forgotten.

© John Swinton 2012

First published in the USA in 2012 by Wm. B. Eerdmans Publishing Co.

This Edition published in 2012 by SCM Press

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A catalogue record for this book is available from the British Library

eISBN 978-0-334-04673-8

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Scripture taken from the HOLY BIBLE: NEW INTERNATIONAL VERSION.

Copyright © 1973, 1978, 1984 by the International Bible Society.

Used by permission of Zondervan Bible Publishers.

Contents

Acknowledgments

Introduction: Being Loved for Who I Am

1. A Practical Theology of Dementia

2. Redescribing Dementia: Starting from the Right Place

3. The Fragmentation of Persons and the Creation of Typical People

4. Moving Beyond the Standard Paradigm: From Defectology to Relationships

5. The Problem with Personhood: Why It Might Not Be Such a Good Idea for People to Be Persons

6. Relational Personhood and the Vanishing Self: Is There a Person in Person-Centered Care?

7. Personhood and Humanness: The Importance of Being a Creature

8. Living in the Memories of God: Memory and Divine Embrace

9. Becoming Friends of Time: Learning to Live in the Present Moment

10. Hospitality among Strangers: Christian Communities as Places of Belonging

Index

Acknowledgments

As with all things, this book was a collaborative effort. There are many people who deserve thanks for their advice and their contribution to the process of writing this book. It is not possible to mention all of them here. However, there are some for whom extra thanks is due. I owe much of what is written in this book to my experiences with many people with dementia that I have ministered with over the years in my capacity as a psychiatric nurse and later as a mental health chaplain. Looking back, in many ways I wonder how useful my ministry was to them at the time. If I knew then what I know now, things might have been different. But I hope that it was useful. My memories of them and the experiences that we had together have been central to what I have tried to capture in this book. Most of these people will have passed on by now, but I hope that as they live out their new lives in God’s memory that they will forgive me for my mistakes and that this book will go some way to compensating for them. I would like to acknowledge with special thanks my friend and colleague Brian Brock for his continuing encouragement, sharp comments, and wonderful theological mind. Thanks also to Eric Stoddart, Aileen Barclay, Donald Meston, and Trevor Adams for taking the time to read through and comment on earlier drafts of this book and to offer me invaluable guidance, comment, and critique. I value your thoughts and your friendship. I am grateful to my friend and colleague Stanley Hauerwas for discussing some of the underlying issues that permeate this book during what was a fascinating time together with Jean Vanier at his home at L’Arche in Trosly, France. I am also grateful to Jean Vanier for the conversations that we have had about the lives of people with severe intellectual disabilities. The stories of such people are not the same as those stories that are lived out by people with dementia, but the resonance is clearly there. The question What does it mean to know God when you don’t have the intellectual capacity to understand who God is? is not a million miles away from the question What does it mean to know God when you have forgotten who God is? Jean’s kindness, deep experience, and beautiful insights have helped me at various levels as I have wrestled with the complicated issues that emerge when we try to reflect theologically on the experience of dementia. I am also grateful to Professor Elizabeth MacKinlay at the Centre for Ageing and Pastoral Studies in Canberra, Australia, for giving me some important opportunities to share some of this material at various conferences and workshops in Australia. These experiences were invaluable in terms of shaping and forming this book over time. As always, I am eternally grateful to my family — to my wife, Alison, whose love is my life, and to my children, Paul, Ryan, Kerri, Micha, and Naomi. You guys are my inspiration and a constant source of confidence within a life that is often filled with self-doubt. Thank you. More than anything else I am thankful to Jesus for being patient with me and for remembering me when I have forgotten whose I am.

A Note on Inclusive Language

Throughout this book I have tried to use gender-inclusive language as much as possible. However, in some cases, for the sake of retaining the integrity of certain texts, I have left some quotations in their original gender-specific form. Gendering God is an aspect of the construction of our image of God which is clearly open to abuse and misrepresentation. I hope that the reader will not be distracted by the approach of those theologians and philosophers quoted in this book for whom the gendered nature of language had not yet become an issue. I want to acknowledge the inherent problems with non-inclusive language. This is particularly so with regard to people with dementia, who, as we will see, constantly have false identities implicitly and explicitly forced upon them.

Introduction: Being Loved for Who I Am

Neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

ROMANS 8:39

The bottom line is — I’m in God’s hands . . . and the medical community’s. And hopefully they’re in God’s hands.

BUTCH NOOAN, A PERSON WITH DEMENTIA¹

In 2009 I was asked to take part in a program on BBC Radio 4 called Beyond Belief. The topic of the program was the theological issues surrounding dementia. The program was a three-way conversation between me (in the studio in Aberdeen, Scotland) and two psychiatrists, one a Muslim and the other a Hindu. Before the interview began, the host of the show, Ernie Rea, told the three of us that we would be asked one final question at the end of the interview and that it might be useful to begin to think about it before the interview started. The question was this: If you ended up having dementia, how would you like to be treated? Great question! But most distracting when you’re supposed to be participating in a complicated and sometimes difficult discussion about the theological dynamics of the human experience of dementia. The interview went quite well, and toward the end of it the host asked the question. I still wasn’t sure what to say. Then, from nowhere, I found myself saying something like this: If I do get dementia, I hope that I will be loved and cared for just for who I am, even if who I am is difficult for me and for others. The interview ended, and we all went home.

Who Am I?

As I was driving home, I began to think back on what we had been talking about. My words returned to me, and they troubled me. Loved and cared for just for who I am . . . The words were simple, but their practical meaning was profoundly complicated. My mind was drawn to one of Dietrich Bonhoeffer’s prison poems titled Who Am I?:

Who am I? This or the other?

Am I one person today and tomorrow another?

Am I both at once? A hypocrite before others,

And before myself a contemptibly woebegone weakling? . . .

Who am I? They mock me, these lonely questions of mine.

Whoever I am, Thou knowest, O God, I am Thine!²

Bonhoeffer’s question Who am I? rings strangely true for many modern people. In an age where people constantly try (and fail) to discover who they are and constantly strive to re-invent themselves (because they assume that autonomous self-construction is a real possibility), this question carries the weight of much cultural desire. However, the apparent simplicity of the question is deceiving. Am I the same person I was twenty, thirty, forty years ago? How can I be the same person when almost all of the cells in my body have been replaced? I bear some resemblance to my previous self, but I don’t look the same. I certainly don’t think in the same ways that I did when I was thirteen, and I don’t have the same priorities, values, desires, or physical capacities. Psychologically, I really don’t see the world in the same way that I did when I was a child. And yet, despite the fact that there is little physical or psychological continuity between the then me and the now me, that which was was me! I was thirteen, and I am no longer that age. I remain me in spite of all of the changes. And yet, when I lay my life out in such ways, I’m still not completely sure who I really am.

The question of who I am is complicated at the best of times. It would become even more complicated if I was to develop dementia. Who will I be when I have forgotten who I think I am? Who will I become when that last tentative connection between who I thought I was then and who I think I am now has been severed? The more I thought about my statement on the radio, the less clear I became about exactly what I was asking people to do when I asked that they love and care for me just for who I am. To ask people to continue to love me even if who I am is difficult for me and for others is a pretty big request. What would that look like? If dementia leads me to become a radically new me, how could I expect people to love this stranger? Why would they? How could they? Who would they be loving? Who will me be? Yet, I want them to keep on loving me. I don’t want to be forgotten or abandoned. I’m just not sure what it would look like to re-member me when I have forgotten who I am and who they are, and . . . who my God is. The psalmist puts it this way: Can the darkness speak of your wonderful deeds? Can anyone in the land of forgetfulness talk about your righteousness? (Ps. 88:12, NLT).

The Complexities of Love

Of course, remaining loved is not always a safe place to be. Some might seek to love the me-with-dementia by offering comfort, solace, and friendship in my times of struggle. But others might see my dementia as a fate worse than death, and assume that death would be a blessed release for me.³ In the name of love and compassion, dementia might seem to be a good reason for justifying euthanasia.⁴ My loved ones might abandon me because they think that I am no longer there, that I’m already dead. My silent pleas that It’s still ME, Lord . . .⁵ may fall on deaf ears. I could find myself standing in the shoes of the psalmist when he cries out, My loved ones and friends stay away, fearing my disease. Even my own family stands at a distance (Ps. 38:11, NLT). Perhaps, even if I can no longer speak the words, I will agree with the psalmist’s fateful resignation: You have taken away my companions and loved ones. Darkness is my closest friend (Ps. 8:18, NLT). When those days come, who will be my voice? Who will be my protector? Who will be my God?

So, I might want to be careful about precisely what I mean when I say that I would like to be loved for who I am! But is it actually fair to ask anyone to love me even when the me that they used to love seems distant and perhaps even absent? If our life together now is really not what they signed up for, how could I expect them to love me and remain faithful to me in the midst of my plight? It might be understandable and appropriate for me to ask those who have loved me in the past to continue to love me. But what about those strangers who will seek to care for me when my family can’t? I may end my days in the company of strangers; caregivers who have never known me apart from what they see me as now: a victim of dementia. What does it mean for them to love me and for me to ask for their love? What kind of love could such strangers give to me . . . and I to them?

Loved by God

Bonhoeffer’s answer to the question Who am I? is to find peace and rest in the assurance that, despite his own confusion, his identity, who he truly is, is known and held only by God. Here he resonates with the prophet Jeremiah’s affirmation that human identity is divinely shaped and held:

"But blessed are those who trust in the LORD

and have made the LORD their hope and confidence.

They are like trees planted along a riverbank,

with roots that reach deep into the water.

Such trees are not bothered by the heat

or worried by long months of drought.

Their leaves stay green,

and they never stop producing fruit.

The human heart is the most deceitful of all things,

and desperately wicked.

Who really knows how bad it is?

But I, the LORD, search all hearts

and examine secret motives.

I give all people their due rewards,

according to what their actions deserve." (Jer. 17:7-10)

In the end only God knows who we are; only God can search our hearts and recognize who we really are. God creates us, sustains us, and knows us. Bonhoeffer may well be correct: Whoever I am, Thou knowest, God, I am Thine! Nothing can destroy such divine recognition (Rom. 3:39). Here Bonhoeffer finds peace. Perhaps here also those suffering with dementia and those who accompany them on their journeys can also find peace. But what would such peace look like? What does it mean to be known, loved, and held by God when you have forgotten who God is and you can no longer recognize yourself or those whom you once loved?

I was still turning these questions over in my mind when I turned into the driveway of my home. It was then that I realized I had to write this book.

Dementia: A Theological Condition?

It is important to be clear from the outset that this is a self-consciously theological book. It is written for Christians and is firmly located within that faith. It is true that throughout it engages with a wide range of disciplines, primarily within the fields of philosophy, psychiatry, neurology, and psychology. However, the core of the Christian argument and the heart of the book relate to developing a specifically theological perspective on dementia. Such a perspective takes seriously established knowledge, but seeks to enable the discovery of options, possibilities, and perspectives which are not available from other sources of knowledge but which are crucial for a truly Christian understanding of dementia and the development of authentically Christian modes of dementia care. The book is not therefore interested in broad forms of spirituality which claim to be generic and neutral.⁶ Such approaches to spirituality may well have their place within the overall arena of how human beings care for those whose lives are marked by dementia; these approaches make people aware of hidden dimensions of the experience of dementia and open up important spiritual spaces within health and social care services, which have a tendency toward the secular and the mundane.⁷ But the focus here will be on quite specific forms of spirituality and theological understanding of the world that emerge from a perspective which is deeply informed by, although not uncritical of, the Christian tradition; a perspective that presumes that the world is created by God, broken by sin, and in the process of being redeemed through the saving works of Jesus.

This basic premise provides the book with a particular orientation and dynamic and presents the relationship between theology and the other disciplines involved in the diagnosis and care of dementia in a particular way. The book does not focus on how medicine can use theology to bring benefits to patients with dementia. That dynamic is quite different — and wrong-headed. For example, many of the participants of the growing religion-and-health conversation in the United States and Europe make a fundamental mistake in seeming to assume that the goals of religion should echo and contribute to the goals of medicine and culture.⁸ If religion eases depression and anxiety, then it should be grafted in as a resource for modern medical approaches to care and intervention.⁹ If it helps people cope better with suffering, then we should seek to develop interventions that enable effective coping.¹⁰ If forgiveness is good for our mental health, then it should be incorporated into therapy.¹¹ From this perspective, it might seem natural to assume that if theology can help enhance the well-being of people with dementia, we should use it as an aspect of our current medical understanding and practice. However, what is rarely considered is the fact that the goals of medicine and theology and their respective definitions of health and well-being may be significantly different. Grafting theology into the goals of medicine simply on the grounds of potential therapeutic benefit will inevitably lead to confusion, dissonance, distortion, and contradiction.

At a very basic level, well-being within Christianity is not gauged by the presence or absence of illness or distress. Religious beliefs and practices may well have therapeutic benefits, but that is not their primary function or intention. Nor is the efficacy of a spiritual intervention theologically determined according to criteria such as reduced anxiety, better coping, or a reduction in depression, important as these things may be at a certain level. Theologically speaking, well-being has nothing to do with the absence or reduction of anything. It has to do with the presence of something: the presence of God-in-relationship. Well-being, peace, health — what Scripture describes as shalom — has to do with the presence of a specific God in particular places who engages in personal relationships with unique individuals for formative purposes.¹² Rather than alleviating anxiety and fear, the presence of such a God often brings on dissonance and psychological disequilibrium, but always for the purpose of the person’s greater well-being understood in redemptive and relational terms.¹³

This is not to suggest that there cannot and should not be a creative and healing conversation between medicine and theology. There is much that these two disciplines can learn from each other. It is the grounds upon which such a conversation should be built that are crucial. We do not do theological reflection on dementia within a medical, psychological, or neurobiological context. In other words, these disciplines do not set the context into which theology speaks. Rather, theology provides an understanding of the basic context into which the medical sciences speak. These disciplines are practiced within the context of creation and under the providential sovereignty of God. This is so even if that theological context is not formally acknowledged.¹⁴ If we truly are relational, dependent creatures, created by a God who remains steadfastly at the helm of creation, moving it toward its final destiny, then a person’s neurobiological state is not a-theological, and scientific explorations of that neurobiology are not pre-theological. In a real sense, neurology is theology.¹⁵ It is in this sense that the book assumes that dementia is a thoroughly theological condition. It makes a world of difference to suggest that dementia happens to people who are loved by God, who are made in God’s image, and who reside within creation. The task of theology is to remind people of that distinction and to push our perceptions of dementia beyond what is expected, toward the surprising and the unexpected.

The Challenge to Theology

A basic premise of this book is that standard neurobiological explanations of dementia are deeply inadequate for a full understanding of the nature and the experience of dementia. What is required is a different approach that not only includes the biological, psychological, and social dimensions of dementia, but also understands and recognizes the critical theological aspects. It is only as we develop this whole sight that we can really understand what it means to be a person with dementia living in God’s creation. However, this book is more than a challenge to medicine and medical approaches to dementia; it is also a challenge to theology. In his book Forgetting Whose We Are: Alzheimer’s Disease and the Love of God, David Keck describes Alzheimer’s disease as the theological disease.¹⁶ He perceives dementia as differing from many other forms of disease insofar as, in his opinion, it erodes the very essence of the self and raises profound existential questions about personhood, love, sin, and salvation:

This disease does differ from other examples of disease, anguish, and death. The unusual situation of a prolonged mental deterioration and the need for sustained caregiving over many years means that we can no longer presume the existence of the cognitive subject when we are thinking theologically.¹⁷

Keck’s point is an interesting one. He asserts that the subjective, cognitively aware I, which is the central focus of much contemporary and historical theology, is not available or at least is radically revised within the lives of people in the advanced stages of dementia. When we put aside for now whether or not Keck is correct, his observation is worth unpacking. A good deal of theology (and, indeed, much of our worship activity¹⁸) hinges on the assumption that the theologian is addressing an individuated, experiencing, cognitively able self, perceived as a reasoning, thinking, independent, decision-making entity. This cognitively able self is assumed to have the potential to know and understand certain things about God, a God who is available at an intellectual level through such things as revelation, prayer, observation, and other forms of self-conscious spiritual experience. Knowledge of God, sin, salvation, discipleship, sanctification, and justification, are all assumed to relate to a fully cognizant being who can understand certain things, who can avoid or engage in certain ways of thinking and acting, and who is able to make particular choices which have positive and negative implications and consequences for now and into eternity. Even at a basic level, the assertion If you confess with your mouth, ‘Jesus is Lord,’ and believe in your heart that God raised him from the dead, you will be saved (Rom. 10:10) requires a certain level of subjectivity, awareness, and cognitive competence. If the criterion for salvation is what we read in Romans 10:13 — Everyone who calls on the name of the Lord will be saved — then those whose intellect, cognition, and memory have been devastated by dementia have a serious problem. How can they claim to love God when they have forgotten who God is?

Subjectivity and Self

Such a focus on subjectivity and the emphasis on the cognitive self are common themes within theology. For example, at the outset of his Institutes of the Christian Religion, John Calvin states,

Nearly all the wisdom which we possess, that is to say, true and sound wisdom, consists of two parts: the knowledge of God and of ourselves. But, while joined by many bonds, which one precedes and brings forth the other is not easy to discern.¹⁹

For Calvin, knowledge of God and knowledge of ourselves (self-knowledge) are wholly intertwined: we can know who we are and why we have what we do only if we look at ourselves in the light of God:

. . . no one can look upon himself without immediately turning his thoughts to the contemplation of God, in whom he lives and moves (Acts 17:28). For, quite clearly, the mighty gifts with which we are endowed are hardly from ourselves; indeed, our very being is nothing but subsistence in the one God. Then, by these benefits shed like dew from heaven upon us, we are led as by rivulets to the spring itself.²⁰

As we recognize our dependency, our contingency, and our location within God, so we are freed to see our true state. As we come to know God, we discover who we are. The more we know of God, the more we realize the depth of our own depravity; the more we recognize the depths of our depravity, the more we are drawn toward the wonder of God’s grace and sanctifying love. Knowledge of God leads to worship and an awareness of who we are before God. I have no difficulties with Calvin’s suggestion regarding the contingent nature of human beings, a suggestion that is key for the argument of this book. Likewise, I recognize that knowing God leads to worship. But it is easy to see problems when we apply Calvin’s ideas about knowledge of God to the lives of people with dementia. If knowledge of God is necessary for knowledge of self, and if the only way to access who we are is through active contemplation of who God is, then we have a problem. What happens when one can no longer remember either self or God? How can I know God if I can no longer contemplate God? Can I no longer know God?

A similar emphasis on the knowing self is found in this oft-quoted observation from Augustine:

Great are you, O Lord, and exceedingly worthy of praise; your power is immense, and your wisdom beyond reckoning. And so we men, who are a due part of your creation, long to praise you — we also carry our mortality about with us, carry the evidence of our sin and with it the proof that you thwart the proud. You arouse us so that praising you may bring us joy, because you have made us and drawn us to yourself, and our heart is unquiet until it rests in you. Grant me to know and understand, Lord, which comes first. To call upon you or to praise you? To know you or to call upon you? Must we know you before we can call upon you? Anyone who invokes what is still unknown may be making a mistake. Or should you be invoked first, so that we may then come to know you? But how can people call upon someone in whom they do not yet believe? And how can they believe without a preacher? But scripture tells us that those who seek the Lord will praise him, for as they seek they find him, and on finding him they will praise him. Let me seek you then, Lord, even while I am calling upon you, and call upon you even as I believe in you; for to us you have indeed been preached. My faith calls upon you, Lord, this faith which is your gift to me, which you have breathed into me through the humanity of your Son and the ministry of your preacher.²¹

If our hearts are restless until they discover God, and if the human vocation is to know and to worship nothing but God,²² then at best, people with advanced dementia are destined to be eternally restless, and at worst, they are never going to find or rediscover the place of heart-to-heart peace within the heart of God. If finding God requires that we actively seek after God, then those who can no longer remember what it might mean to do so find themselves trapped in a place of eternal lostness and hopelessness. If we cannot seek the Lord, how can we praise God? If we cannot know and praise God, then how can our hearts be anything other than restless?

If then, as Anselm²³ in like vein suggests, faith has to do with seeking understanding — that is, an active love of God seeking a deeper knowledge of God — then it is clear that people with advanced dementia have no real way of finding God. The experience of seeking understanding is precisely what is being lost as one encounters the latter stages of the process of dementia. It would appear that people who are losing their sense of self (at least that sense of self which is addressed in a good deal of theology) will struggle to access God, who, it appears, directly addresses only the cognitively able, and who offers no real way to access people for whom selfhood might have a radically different meaning.

Problems arise even in theological ideas that at first might seem to lend themselves positively to the losses that accompany dementia. For example, Friedrich Schleiermacher argues that God is given and present in and with the feeling of absolute dependence. As an existential experience that resonates in interesting ways with the experience of advanced dementia, discovering God in absolute dependence has the potential to be helpful. Indeed, it is precisely an outworking of this suggestion that underpins much of what is to come in this book. Absolute dependence is the true state of all human beings, and that radical dependency has important implications for how we frame dementia. The problem is that, for Schleiermacher, the awareness of God is the feeling of absolute dependence:

The feeling of absolute dependence, accordingly, is not to be explained as an awareness of the world’s existence, but only as an awareness of the existence of God, as the absolute undivided unity.²⁴

Such a feeling requires an awareness of the nature of God, and such awareness requires a person to have the cognitive capacity to develop the conceptual language necessary to be aware and to feel dependent on God. How does one know God when one cannot understand or conceptualize the meaning of absolute dependence or interpret and make sense of such a feeling? Despite the fact that the lives of people with advanced dementia are profoundly marked by the experience of absolute dependence, it is not the absolute dependence that Schleiermacher speaks of.

Toward a Practical Theology of Dementia

These theological problems are not simply dissociated academic arguments. They are in fact deeply practical in consequence and orientation. David Keck notes,

The loss of memory [in dementia] entails a loss of self, and we can no longer be secure in our notions of self-fulfillment. Indeed, our entire sense of personhood and human purpose is challenged. Because we are dealing with the apparent disintegration of a human being — indeed, the apparent dissolution of many human beings — a thorough reconsideration of many fundamental theological questions is not entirely out of order.²⁵

If the primary focus of theology is on the cognitively aware subjective self, and if that very self is perceived to be dissolving as the process of dementia works itself out, then the forgetfulness that marks dementia will inevitably be mirrored by the ways in which theology forgets the experiences of people with dementia. This dual forgetfulness — one the product of neurology, the other the outcome of hyper-cognitive theological assumptions — will inevitably lead to practices which are ill-informed, theologically naïve, and potentially destructive. Keck is correct in suggesting that what is required is a thorough reconsideration of some fundamental theological questions. The intention of this book is to explore what that might look like.

However, while Keck is right on this point, it is not at all clear that Keck’s statement that the self is dissolved in the context of advancing dementia is in fact true. If we are our memories, if our sense of who and what we are in the world is determined by what we can remember about ourselves and the world around us, then Keck is correct: losing our memory will inevitably mean losing our selves. If our selves are perceived as isolated islands of memories, then we will inevitably disappear when these memories abandon us. In this sense dementia does indeed seem to dissolve our selves, challenge our cultural assumptions of what it means to be human, and force us to question the meaning of a life well-lived. However, as will become clear, human beings are much more than bundles of memories. The key in Keck’s statement lies in the word apparent. There is a world of difference between an apparent dissolution of a human being and the actual dissolution of that person. As this book will show, while many things might seem apparent when we encounter people with dementia, if we go deeper, if we listen to people and are prepared to give them the benefit of the doubt, that which at first seems apparent is quickly revealed to be much more complex, opaque, and surprising. It is true that when we encounter people with dementia, we can no longer be secure in our notions of self and self-fulfillment, but that is at least partly because such notions may be false perceptions based on false premises. It will be one of the tasks of this book to show that, devastating as dementia undoubtedly is, the human beings experiencing it do not dissolve. They are certainly changed, and there is much suffering and cause for lament. But these people remain tightly held within the memories of God. It is our ideas about what humanness, the nature of the self, and self-fulfillment mean that will have to be dissolved