Thousands of people in the UK and around the world are living with dementia. Many are Christians who are part of a local church. Perhaps you, or someone you know, is starting this journey. So, what happens to our faith if we get dementia? And how can we as fellow believers support one another and nurture our faith through this experience?
In my recent research, I had the privilege of talking with committed Christians who are living with dementia. They spoke passionately about their continuing – even growing – faith and confidence in Christ (names given here are not their real names to protect anonymity). Here’s Alice:
‘…God is always with me … and I know that there’s nothing that can ever separate me from him … but now, even when my brain falls apart … it doesn’t matter.’
David, asked about feeling afraid in the light of his developing dementia, exclaimed: ‘Fear! There is no fear in Jesus!’ And questions about dementia making you feel distant from God brought assertions of the opposite: ‘Closer,’ Rosemary exclaimed. Thinking of the future, Ron said confidently, ‘I know where I’m going … heaven … my God is …there.’ Trust and hope were interwoven in the words of each of the research participants’ responses. Such testimonies are courageous and moving. But how do these make sense in the light of experience and Scripture?
Identity and faith
The ideas of losing your identity and self have become common assumptions as consequences of dementia. For Christians, another question follows, ‘What will happen to my faith, if I lose my “self”?’ Or, as Christine Bryden has queried, at what point on this journey do I cease to be me – and therefore, possibly, lose my relationship with God? What is my identity as a Christian who has dementia? What is ‘saving’ faith for the Christian whose ‘brain falls apart’. Or, for any of us?
The questions raised by dementia, send us back to the Bible to look at some of our assumptions through this different lens.
Who am I?
Most Christians agree that all human beings (whatever their race or faith) are created in the image of God (Genesis 1:26,27). All are ‘breathed’ into life by God – they are both body-and-soul (Genesis 2:7). Together, with all the strength of who we are – body, soul and spirit – we are to love our sovereign God and our neighbour (Matthew 22:37–40). So, we are used to the idea that as God’s people we honour all other human beings as sacred whoever they are. Yet, dementia – if it takes our capacity for rational thought, our memories, our personal identity – might this not also threaten our human status? Some have suggested this might be the case. This is a frightening thought for those who are beginning this journey.
Today in the West, the logical, rational thinking of the Enlightenment is still engrained in how we understand the meaning of faith. Even as Christian believers we default to dependence on the assumption that our cognitive capacities demonstrate our humanity and worth. Dementia pushes us to ask ourselves about the nature of our identity and faith.
Being in Christ
When we get to a later place in God’s story, we make some surprising discoveries. Not only are we made in God’s image, as believers we are caught up in Christ, the perfect image of God (Colossians 1:15; 2:6,7). Grace is not about our talents and thinking capacities making us good enough; it is all about God’s undeserved gift of mercy and love (Ephesians 2:5).
Being ‘born again’ of God’s Spirit isn’t something frailty and illness can undo (I have always been ‘not good enough’). In dementia, my expressions of trust in Christ might be a simple ‘Amen’, a quiet humming of ‘Jesus loves me this I know’; or a momentary smile expressing acknowledgement of him. And God is always on the look-out for those who are seeking him. So, the thief on the cross at the end of life, recognising his sin and the sufficiency of Christ, turns to him and is welcomed (Luke 23:40–43). Elsie, an elderly lady with no known pre-dementia faith commitment, spoke of her own sense of unworthiness, then responded with a joyful ‘Does he?!’ when told that Jesus loves, forgives and accepts her. God’s grace trumps cognitive capacity. In Christ, whatever our situation, having died with him our sin is dealt with ‘once for all’ (Hebrews 10:10, NIVUK), and we have been raised to new life in him with the Father, enabled by the Spirit. Nothing can separate us from the love of God (Romans 8:38–39).
What about now?
So that’s ok then. Whatever dementia brings to me – loss of memory, apparent changes from the pre-dementia self, decreasing ability to respond to others – my essential identity as ‘me’ and my saving faith are safe in Christ. It’ll be all right in the end. But what about now?
Being part of the Body of Christ
One of the tragedies of our western Enlightenment thinking is that we’re convinced of the priority of our personal independence and identity. English translations of Scripture have enforced this with our reading of ‘you’ as meaning ‘me’. In St Paul’s writing in particular there is a different story. ‘You’, more often than not, refers to ‘us’ (1 Corinthians 12:27).
Think for a moment of Paul’s writing about the Body of Christ. All parts of the Body are valued; the weaker parts receive greater honour (1 Corinthians 12:22–23). Sure, we believe this in theory, but how is this reflected in the habits of our church’s life? Do we notice when Sue (‘Oh she’s got dementia now’) and her carer husband are no longer coming to church services? Do we notice Ben’s embarrassment when he can’t find his way back to his seat after going forward to receive communion? What can we, as the Body of Christ do to demonstrate that Christians who have dementia belong to our fellowship, and their gifts are valued? How can we spur each other on (Hebrews 10:24) – and help one another to keep growing in Christ? Or, does the culture of our local church value achievement, social status, appearance etc in ways which exclude those who no longer meet such criteria?
Expressions of faith
Of course, dementia brings changes to faith practice. Bible engagement and prayer may happen in different ways. Alice tells me, ‘I can’t read the Bible because it’s too difficult now to read, so I listen to it every day.’ Asked about regular times of prayer, Rosemary says that now prayer is a conversation with God through the day. Failing concentration and memory may make the old disciplined practices of Bible and prayer impossible. So we need to find other ways of helping our brothers and sisters in Christ receive God’s word and pray with them. Attendance at church services may be particularly difficult for everyone. Unpredictable, informal departures from the normal service may be confusing. If most songs are unfamiliar, the words and music cannot do their work of reconnecting the Christian living with dementia to their sense of God’s closeness.
Some have surprisingly queried whether those living with dementia should still be allowed to participate in a service of communion: ‘Do they know what it means?’ Fortunately, as discussed above, God’s grace does not depend on what any of us know. The Lord’s Supper supremely demonstrates that as God’s people we come to his table as equals. For those living with dementia, actions, taste, smell, familiar words, interactions of giver and receiver awaken memories and come together to communicate the love of God for us and demonstrate our receptive response to him. It is a sacred moment of being together in the presence and welcome of Christ.
Yet, all of the above, for those not affected by dementia, require patience, empathic imagination and creative love.
Walking through shadow
No matter how strong my trust in God, there is no doubt that dementia brings darkness. In spite of my participants’ vibrant trust in God, there have been times when they have cried out (as Jesus did), ‘My God, my God , why…?’ (Mark 15:33–34; Psalm 22:1) There may be times of overwhelming confusion: it’s like going ‘up an escalator which is coming down’ (Rosemary). There will be times when the assumptions of other Christians about our faith in our experience of dementia hurt us: ‘You must have forgotten…’ Nevertheless, the participants in my research knew, that in spite of, and above everything, God was with them and that, ‘I am loved’ (Alice).
Dementia challenges all of us. How can we, as fellow disciples of Jesus, accompany those who are walking through the darkness of this illness?
Growing in faith
Now , here is another surprising theme from Scripture: in suffering and darkness there is joy, hope and growth (see Romans 5:1–5). We only need to look at the story of God’s people in the Old Testament and the reflections in the psalms to see this pattern at work. For the Christian believer the Scriptures tell us again and again that in suffering our trust in God is strengthened as we become increasingly filled with the hope of faith which invades our experience of the present. Faith then is not only ‘a pragmatic coping strategy’.
In my research this was evident in the words of those I interviewed. In spite of acknowledging their experience of darkness, they also spoke of being filled with joy and peace – and of their hope in Christ. Of course, they and we are dependent on the work of the Holy Spirit to bring this kind of transformation: ‘I have a kind of peace… which doesn’t come from me. I think it comes from God,’ Jill said. So, let’s pray with and for each other!
Walking with each other
Pastorally, how might we co-operate in this particular discipleship journey? In the confident and joy-through-tears faith of my research participants there were some shared characteristics of how they were responding to the presence of dementia in their lives. These resonate with words of the apostle Paul to the Christians in Rome:
We boast in our hope of sharing the glory of God. And not only that, but we also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us (Romans 5:2–5, NIVUK).
Astonishingly, there was a sense of God’s purpose in their illness: ‘If God had not willed me…’ (Rosemary). There was also a deliberate acceptance of God’s purpose, bringing the response of how can I live out this experience which I receive from God? There was ongoing trust in God’s love and a desire, in the midst of dementia, ‘to just bring glory to him’. And joy was present: ‘I’ll never lose that joy, but I have lost my memory,’ Ron reflected quietly. Underlying it all was hope for the future, transforming experience of the present. Endurance was being enabled in the knowledge of this hope as the Holy Spirit was (still) at work in their lives. Growth seems to be St. Paul’s expectation of believers as part of their nature of being in Christ. So, perception of God’s purpose, acceptance of this, continuing trust in God’s love, rejoicing in his will for my life – all was being enabled by hope in Christ through the work of his Spirit.
There’s another hidden ingredient in response to the ‘how can this be?’ question. Embedded in Paul’s words is the assumption that he is addressing a community of believers. Endurance in the New Testament is enabled by the supporting, remembering community of faith. As we prepare for or care for the developments of dementia, we need to think again about what it means to be part of the Body of Christ. ‘They have to remind me,’ Alice asserts of her faith community. Christine Bryden appealing to her fellow believers pleads:
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 … I need you to minister to me, to sing with me, pray with me, to be my memory for me.
What happens to our faith in dementia?
Our essential identity – who we are in Christ – is safe in him. As human beings, this illness will bring changes to how we express ourselves and our faith. But God’s love for us does not change. Witnessing the experience of those who live with dementia as fellow disciples of Christ teaches us a new awareness of our own sense of identity, frailty and the meaning of our faith. Humbly, we endeavour to learn from one another, seeing Christ himself in the lives of our ‘weakest’ brothers and sisters.
Yes, we can help one another – but not from assumptions of our own superiority or as those who have ‘right’ answers. Rather, as Dianne Crowther reminds her readers, it will be as those who walk ‘in solidarity’ with their fellow disciples in the community of faith. As Jesus calls us to be with him, so we are called to walk with those who travel through the shadows of dementia – our eyes fixed on Jesus who has walked this way before.
© ‘Tricia Williams, PhD
‘Tricia has recently completed her PhD research at the University of Aberdeen, under the supervision of Professor John Swinton in the area of faith and dementia. Here she reflects on the experience of faith for Christians who live with this illness. Her work suggests that dementia can bring fresh perspectives for understanding who we are, the nature of faith, and what it means to be ‘church’.
Email: [email protected]
Further reading suggestions:
Christine Bryden, Dancing with Dementia: My story of Living Positively with Dementia (Jessica Kingsley, 2005).
Jennifer Bute and Louise Morse, Dementia from the Inside: A doctor’s personal journey of hope (SPCK, 2018).
Dianne Crowther, Sustaining Persons, Grieving Losses (Cascade Books, 2017).
John Swinton, Dementia: Living in the Memories of God (Eerdmanns , 2012).
 Christine Bryden, and Elizabeth MacKinlay, ‘Dementia: A Spiritual Journey towards the Divine: A Personal View of Dementia,’ Journal of Religious Gerontology, 13:3-4 (2003):71, http://dx.doi.org/10.1300/J078v13n03_05
 Peter Kevern, “Dementia and Spirituality: The current State of Research and its Implications,” 2018, https://www.rcpsych.ac.uk/pdf/Peter%20Kevern%20Dementia%20and%20Spirituality.pdf
 Stanley Hauerwas, The Peaceable Kingdom: A Primer in Christian Ethics (University of Notre Dame Press, 1983), 98.
 Christine Bryden and Elizabeth MacKinlay, ‘Dementia: A Spiritual Journey towards the Divine,’ 74.
 See further discussion of this in John Swinton, Becoming Friends of Time (London: SCM, 2017).
 Dianne Crowther, Sustaining Persons, Grieving Losses (Cascade Books, 2017), 167.