The Revd Malcolm Goldsmith, the Rector of St Cuthbert's Episcopal Church in Edinburgh, who has made a special study of spirituality and dementia, looks at the challenge dementia poses to our theology.

This article was first published in the Autumn 2002 issue of Chrism. The author's profile below is from the same date

Malcolm Goldsmith is the Rector of St Cuthbert’s Episcopal Church in Edinburgh. Ordained 40 years ago he has also worked in Birmingham, Nottingham and Bradford as well as for International Voluntary Service. A few years ago he was a Research Fellow at Stirling University working within the Dementia Services Development Centre and wrote ‘Hearing the Voice of People with Dementia’. He has developed an interest in Spirituality and Dementia, frequently written about it and now has returned to Stirling for one day a week to do further work in this area.

© Guild of St Raphael

In a Strange Land

Way back in Old Testament times people’s understanding of God was on a steep learning curve. It is possible to trace a development from rather crude and perhaps simplistic forms of belief through to much more mature and sophisticated patterns. As people reflected upon their experiences, so they gradually perceived that there was more to their ideas about God and themselves than they had originally thought. The same is true for us, of course.

The particular experience that I want to focus on for a moment was that of the Exile. In the year 587BC Judah was invaded, Jerusalem was ransacked, the Temple destroyed and many people were led away into exile, into Babylonia. Not only was this a political and social disaster, it was also seen as a religious disaster. This is because at that time the common understanding was that God was a territorial God. Yahweh was the God who reigned in Judah and who required obedience and faithfulness from the children of Israel, but beyond that territory, other gods reigned in other countries. So when the people were led away, out of the land of Judah it was believed that they were leaving the jurisdiction of their God and they were now to be forced to live in a strange land with strange gods. And so in Psalm 137 we read: ‘By the waters of Babylon we sat down and wept: when we remembered thee, O Sion . . . How shall we sing the Lord’s song: in a strange land?’

What we now know, looking back with hindsight, is that this time in the foreign land, was to be a time of great blessing and a time when significant shifts in theological understanding were to take place. To begin with, there was the discovery that God was still accessible in this foreign land. God was God way beyond the boundaries of Judah. As people reflected on that discovery, so new writings emerged and some of the most wonderful passages in the Old Testament took shape—especially chapters 40-55 of Isaiah. New forms of worship emerged; synagogues became focal points now that it was no longer possible to worship at the Temple. So from a situation of despair and seeming disaster, new insights about the nature of God and new and unexpected experiences of God’s presence were discovered.

I want to suggest that our experiences of dementia are perhaps not too dissimilar—at least for the first part of the story. For the person with dementia, for their families and carers and perhaps for their churches and faith communities, there is a sense of moving away into a strange and foreign land. They do not understand it. They are aware of what they are losing or have lost, and are not at all sure whether it will be possible to experience God—the grace and peace of God in the new situation which is emerging. Life may appear to be getting more bleak, and it often does get much more difficult to handle, as the months go by. The future looms before them, uncertain and foreboding; and they often feel very isolated, confused and frightened. An engagement with dementia poses quite a number of theological challenges; some of them are general, highlighted by the experience of dementia and some of them are more specific. There are challenges to be faced by the person with dementia, by carers and family members and by local churches as they minister (or, more often, fail to minister) to people with dementia.

It has been said that an enemy named is an enemy disarmed, and whilst it is not true that knowing about and understanding things about dementia will remove the problems, it can often be the case that problems are easier to handle if we do know something about them. There is now quite an amount of accessible literature explaining the different types of illnesses which, grouped together, go by the name of dementia. There is a greater awareness of self-help groups and support groups provided by organisations such as the Alzheimer’s Society. There is a much greater understanding on the part of the general public about some of the difficulties and behavioural patterns that people with dementia may face or exhibit and the stresses their carers may experience. All this is to be welcomed. But society is still in the stage of infancy when it comes to good and creative dementia care in so many areas and in so many places. Furthermore, many organisations and institutions such as the Church still often have difficulty in knowing how to handle some of the challenges posed by dementia, and all too often they do nothing in the hope that the problem will go away. Sadly, so often people with dementia do go away and they and their carers are allowed to drift away from the worshipping communities which may have sustained them over the years.

For the person with dementia, this is a journey into the unknown. In the last few years, for the first time, we have been able to read some of the experiences of dementia written by the people themselves and not by those observing them. For all of them it is an illness, and it is progressive and bewildering; but people are affected in different ways. If we are to be alongside them then it is important that we endeavour to know about their personality, their general health and sense of well being, their interests, their family networks and their capacity to change or cope with change. Each individual is unique—we know this, but it is so important to observe it and to demonstrate that we know it, when working with people with dementia.

Very few people with dementia will have been given a sufficiently early diagnosis for them to be able to plan ahead very much or talk about the issues. Once a diagnosis has been made they will most probably have been ‘protected’ from it by a process of denial and/or collusion by their family and friends, thus minimising the amount of time they have had for mental, emotional and spiritual preparation. As their illness progresses there is a tendency for people with dementia to be marginalised and, either by choice or by circumstance, they will find themselves left out of conversations, left out of social activities—left out of worship. They may therefore retreat into silence or depression—or they may come out fighting, displaying various types of ‘challenging behaviour’. I am reminded of Dylan Thomas’s poem about his father who did not have dementia but cancer of the tongue, but the sentiment is not too dissimilar:

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

However they respond, they will increasingly be seen and experienced as being a ‘problem’ to their carers, their family, their neighbours and their faith communities. In one sense they are, but the ‘problem’ is ours, not theirs.

Tom Kitwood who died a few years ago, one of the great gurus of dementia care, identified a whole range of experiences common to people with dementia which make up what he described as ‘malignant social psychology’. They include:-

Treachery, disempowerment, infantilization, intimidation, labelling, stigmatisation, outpacing, invalidation, banishment, objectification, ignoring, imposition, withholding, accusation, disruption, mockery and disparagement.

A whole article could be written about each of these and the more we reflect upon them the more devastating they become. Each of them presents us with a challenge to faith and practice, because what on earth are we doing to people if this is what they really experience, and what has happened to us if we are unaware of what we might be doing? Kevin McKee has movingly reflected upon such a scenario: ‘If, as I suspect, there is a connection and not a discontinuity, between the worlds of those with dementia and those without, and if there is the slightest possibility that a kernel of tranquillity persists at the heart of the chaos of dementia, then we have been culpable in the past of a hideous sin; that of denying humanity to those who, in their vulnerability, are perhaps most human. In so doing we have probably not only exacerbated that vulnerability, but also heightened the terror of the experience.’

Each time I reflect upon Kitwood’s list of malignant social psychology I am reminded of Psalm 22: ‘My God, my God, look upon me; why hast thou forsaken me: and art so far from my health, and from the words of my complaint ?. . . But as for me, I am a worm and no man: a very scorn of men, and the out-cast of the people. All they that see me laugh me to scorn . . .’ (And those plaintiff subsequent words) ‘But be thou not far from me, O Lord: thou art my succour, haste thee to help me.’

And what are the spiritual needs of people with dementia? To be accepted, loved, given worth and honour, to be befriended and listened to, to receive grace and mercy, to ‘rest in God’ however that may be articulated. In fact, they are just the same as the spiritual needs of everyone else. But there needs to be a greater degree of sensitivity, a greater tolerance and a willingness not to force the pace.

Christine Bryden, an Australian Anglican who has Alzheimer’s disease, speaking at a conference (please note!) said: ‘Where does this journey begin and at what stage can you deny me my self-hood and my spirituality? . . As I lose an identity in the world around me, which is so anxious to define me by what I do and say, rather than who I am, I can seek an identity by simply being me, a person created in the image of God. My spiritual self is reflected in the divine and given meaning as a transcendent being. . . As I travel towards the dissolution of my self, my personality, my very “essence”, my relationship with God needs increasing support from you, my other in the body of Christ, don't abandon me at any stage, for the Holy Spirit connects us, it links our souls, our spirits—not our minds or brains. I need you to minister to me, to sing with me, pray with me, to be my memory for me’.

Later, she continued, ‘I will need you to be the Christ-light for me, to affirm my identity and walk alongside me. I may not be able to affirm you, to remember who you are or whether you visited me. But you have brought Christ to me. If I enjoy your visit, why must I remember it? Why must I remember who you are? Is this just to satisfy your own need for identity? So please allow Christ to work through you. Let me live in the present. If I forget a pleasant memory, it does not mean it was not important for me. .’

There are practical issues that churches and faith communities need to address when thinking about their work with and their responsibilities to people with dementia. To what extent are people incorporated into the worshipping community? What contact is maintained with them when they are no longer able to attend places of worship? How do we continue to sustain them in the sacramental life of the Church or in other ways, which may have sustained them over the years? How do we cope with occasional outbreaks of aggression or ‘inappropriate behaviour’, or—perhaps more often—with apparent blankness and an unawareness of who we are and what we are doing? Make no mistake about this, ministering to people with dementia is not easy, and it requires from ministers, be they ordained or lay, patience, perseverance, considerable skill and a sense of being ‘sent and empowered’ for this type of work. I don’t mean in an extroverted ‘missionary zeal’, but in the sense that the minister needs to be secure enough in his or her own faith to know that there may be no signs of progress and no signs of having achieved anything. Far more likely, there is likely to be a sense of failure and doubts as to whether it is worth continuing. It is worth continuing, but it is not easy.

In a world in which ‘success’ is measured by numbers, by growth, by finance and power—and it is a world which is not unknown to our churches, most of them share it to some degree or other—the experience of dementia represents just about everything that is ‘unsuccessful’. We therefore need a theology of patience, of suffering, of ‘failure’; a non-judgmental, open-ended and merciful theology. Not a theology of certainty but of tentative exploration, for we are confronted by a strange and foreign world, and it really does challenge us as to whether it is possible to sing the Lord’s song within it. We are entering the community of the dispossessed and we need to discover the resources to enable us to approach it with hope and with love, with time and with graciousness, with gentleness and with faith.

Debbie Everett, a Canadian hospital chaplain has understood this: ‘People with dementia are magic mirrors where I have seen my human condition and have repudiated the commonly held societal values of power and prestige that are unreal and shallow . . . Because people with dementia have their egos stripped from them, their unconscious comes very close to the surface. They in turn, show us the masks behind which we hide our authentic personhood from the world’.

I love the words of Sheila Cassidy when she writes about ‘the prophetic nature of caring for those who are, in economic terms, useless’. She says: ‘It is a lavishing of precious resources, our precious ointment, on the handicapped, the insane, the rejected and the dying that most clearly reveals the love of Christ in our times. It is this gratuitous caring, this unilateral declaration of love which proclaims the gospel . . .’ Later she writes: ‘It is a particular form of Christian madness that seeks out the broken ones, the insane, the handicapped and the dying and places before their astonished eyes a banquet normally reserved for the whole and the productive’.

The question that comes back to me time and time again when I am working in this area is, ‘What is the good news for people with dementia?’. A secondary question is, ‘Do our churches have access to and experience of that good news?’. Now these might sound like trivial, almost impertinent questions, but I raise them in all seriousness. Like countless numbers of other Christians I have been brought up with a theology which stresses the need for people to repent, to believe, to place their trust in God, to give thanks, to accept Christ as their saviour. In other words, I have inherited a faith which requires me to do something, to believe, to pray, to acknowledge God in one way or another. Now all that is bad news for the person with dementia.

What if a person cannot remember what they have done wrong, or what they need to be grateful for, or who it was who has sustained them over the years? What if a person cannot remember hearing about Jesus, or cannot remember having an awareness of God? The traditional models of faith and discipleship, to my mind, place far too much emphasis upon what we do, or don’t do. In this way, the initiative seems to lie with us, and our spirituality is in one way or another dependent upon our own capabilities. The Gospel on the other hand, is all about God’s initiative, all about God’s love and care and mercy. The good news is about God’s belief in us and acceptance of us, and not about our belief in and acceptance of, God.

Looked at in this way, perhaps the experience of dementia, this journey into a strange and foreign land, has something to teach the Church. Perhaps, as those in exile in Babylonia discovered new ways of understanding God’s presence and nature, we are on the threshold of discovering new ways of understanding God’s presence and nature in our contemporary world. It is not about our belief in God, or anything else that we have to do or be. It is about realising that we are accepted and acceptable—as we are, warts and all. All are welcome, all are welcome, all are welcome.

If we have no good news for the person with dementia, then surely we have very little good news to offer anyone else. We are being invited to walk into a new phase of experiencing and understanding God and it is one in which we are always the receiver, the blessed and the accepted, and nothing is required of us save that we are ourselves, as we are—and that is enough, it is always enough. There is a fullness of spirituality for the person with dementia, let it not be said that the churches or communities of faith denied or hindered that possibility.

© Guild of St Raphael