Health and Social Care Chaplaincy, Vol 4, No 2 (2016)

doi:10.1558/hscc.v4i2.31663

doi:10.1558/hscc.v4i2.31663

Editorial

Spirituality, Dementia and Mental Health

John Swinton1

University of Aberdeen, Aberdeen, Scotland

It was Christine Bryden who in the light of her diagnosis of early onset dementia asked the question: Who will I be when I die? In asking such a question she draws us into the strange world of dementia and the mystery of human identity: Who am I? Where do I come from? Where am I going? Why? Dementia raises profound spiritual questions that require careful and thoughtful answers. In different ways, the authors of the articles in this issue of the journal, seek to offer answers and perspectives that probe into the enigma of humanness and what it means for “me” to be “me”.

Dementia

The initial articles focus specifically on dementia. Emily Smeaton and Craig Maher in their review of the literature around spirituality, religion and dementia care, offer a convincing case for us always to bear in mind that if we take a multi-dimensional and genuinely person-centred approach there are powerful ways in which we can engage in spiritual practices (religious and non-religious) that can help individuals living with dementia to experience their lives in ways that are affirming and identity forming even in the midst of great loss. As human beings we are not simply the accumulation of our memories. We are whole human beings who access our spirituality through the fullness of our bodies and not just via our brains. If we forget this and try to define ourselves by memory alone, things can become more complex – not less.

Lorna Murray draws this out in her reflections on reminiscence. Those who walk with people living with dementia may have a deep longing for them to remember. But what if those memories are toxic? What if our practices of remembering and reminiscence draw us into periods in our lives that we would be only too happy to forget? Murray offers some thoughts on what needs to be done if reminiscence is truly to be healing.

Patricia Williams eases us into the realm of theology by pushing us to think about what it means to know God in the midst of dementia. Faith is not simply what we can remember of God. Faith relates to who we have become in and through our journey with God. Such knowing is much more than simply being able to remember things about God. It has to do with being with God; a God who has promised never to leave nor forsake us.

Frits de Lange pushes in a similar direction in his critical review of the book Dementia: Living in the Memories of God (Swinton 2015). We are not who we think we are. We are who God remembers us to be. It is this fact that opens up space to begin to answer Christine Bryden’s profound question noted earlier (Who will I be when I die?). If, as Sarah Blanchard and Neil Millar inform us, ageing is a vocation, then perhaps we need to begin to think through precisely what it means for someone to have dementia and to have a specific calling from God. What might it mean to be a disciple and to have forgotten who God is?

Dementia brings us other deep questions which challenge us to think differently about the nature of humanness, primary among them the question: what happens to our love when we have forgotten what it is that we love? Where does our love go when we can no longer remember those whom we “used to” love?

Recently I had a fascinating conversation with an Anglican priest who is a stroke survivor. He spoke to me about his experience of having a stroke whilst on holiday in France. There are many things that struck me about his experience – how it drew attention to his mortality, how it challenged the way in which he prayed and the things he prayed for, the way that he felt God was with him then and now – but one aspect of his story has really stuck with me. At one point in our conversation we were reflecting on the impact of his stroke experience on the way in which he viewed his family. The priest said this:

I had to believe that the love that I have for my wife and my children does something and goes somewhere.

How interesting! Where does love go? The priest’s experience resonates into the area of dementia and memory loss in intriguing ways.

Will you still love me tomorrow?

There is a verse in the Carole King song, “Will you still love me tomorrow?” (King & Goffin 1971) that always makes me think. Indeed it worries me a little. It goes like this:

Tonight you’re mine, completely
You give your love so sweetly
Tonight the light of love is in your eyes
But will you love me tomorrow?

The song talks about the power of the passion of love and the tension between the passion of the moment and the possibility of a love that may or may not endure. If we shift the context a little, it becomes clear that the lyrics of Carole King’s song captures something profoundly important in relation to those living with advanced dementia and those who love them. The question, “Will you still love me tomorrow?” which is repeated in the final verse is not simply a matter of immediate passion; it is a question of deep existential concern. The great fear for those encountering dementia is that the one whom you love; the person who binds your heart to this world more than anyone else can change in such a way as to forget your love. The apostle Paul tells us that love endures: “There are three things that will endure – faith, hope, and love – and the greatest of these is love” (1 Corinthians 13:13). Why then can and does it feel so different?

Lisa Genova’s excellent book Still Alice (Genova, 2007) speaks in the first person about Alice Howland, a linguistics professor at Harvard who in her early fifties is diagnosed with Alzheimer’s disease. The book sensitively narrates Alice’s painful journey into dementia in a way that is penetrating, delicate, thoughtful and deeply moving. At one point Alice has a poignant conversation with one of her daughters over the issue of where her love will go as her dementia progresses:

“You’re so beautiful”, said Alice. “I’m afraid of looking at you and not knowing who you are”.
“I think that even if you don’t know who I am someday, you’ll still know that I love you”.
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me”.
Alice liked that. But will I always love her? Does my love for her reside in my head or in my heart? The scientist in her believed that emotion resulted from complex limbic brain circuitry, circuitry that was for her, at this very moment, trapped in the trenches of a battle in which there would be no survivors. The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.

Alice’s situation illustrates well the excruciating tension between perceiving dementia as a neurological condition that destroys a certain form of memory and holding on to the hope that lies in the possibility that our hearts somehow retain our love. Alice locates her source of hope in the heart; the mysterious centre of affectivity that holds us in relationship with both God and our fellow human beings. Our brains may deteriorate, but our hearts hold on to love. Our encounters with God in the Spirit, through our hearts does not vanish with the wear and tear that time brings to our bodies. Our love endures. “Love never fails” (1 Cor. 13.8). When we begin to think in these ways we are drawn into the ways of mystery, wonder and stories.

Mental Health and Spiritual Development

In their articles, focusing on different aspects of spiritual development and mental health, Judith Gilbert and Julie Leibrich draw us even more closely into the ways of the heart. Gilbert’s reflections on the use of Berryman’s Godly Play (2012) in the context of mental health draws out the power of story and play, modes of holistic being wherein spiritual development helps capture something of the formative power of spiritual development.

Julie Leibrich’s fascinating reflections on the nature of wonder, mystery and miracle take us deeper into the heart. Her narrative construction of sanctuary opens up powerful conduits for spiritual development that offers fresh possibilities for forms of mental health and healing that are not bounded by standard expectations. Josephine Snowdon also gives us another angle on mystery and wonder as she reflects on children with special needs, carefully drawing out the ways in which spirituality is primarily a way of knowing that is fundamental to our sense of mind, body and soul. Taken together these eight articles challenge us to think differently, not only about dementia, spiritual development, mental health and disability, but about what it means to be human and to live humanly.

Empirical Research

Harold Koenig and colleagues close this issue with rigour and verve as they lay out the results from a recent study on Religious Cognitive Behavioural Therapy and major depression in chronic illness. Their work discusses a randomized controlled trial carried out over three years comparing whether religiously-integrated cognitive behavioural therapy (RCBT) is as effective as standard CBT in the treatment of major depressive disorders. Their results indicate that RCBT is effective and can be carried out by Chaplains. This piece offers another supporting statement against those who insist on trying to persuade us that spirituality and religion may be bad for our health. It might be best for people to check out the evidence before answering.

Anne Miller’s conference report from the 14th Consultation of the European Network of Health Care Chaplaincy held in Debrecen, Hungary in June 2016, raises some vital questions around whether, how and why chaplains should engage in research. Beginning with the provocative question: “Would you trust a doctor who is not interested in research?” the report teases out the significance of research for chaplaincy and explores whether such a question has pertinence if asked of chaplains.

Finally, I wish to draw your attention to the notice regarding “Chaplaincy Case Studies” for the HSCC 5.2 edition (2017) – please take the time to complete a submission as you will be helping to contribute to research and the education of the chaplaincy profession.

Acknowledgements

Every edition requires a thank you, not only to the contributing authors, but also those supporting the Equinox production process (particularly copy-editors!), plus the editorial review board members (who have worked so hard undertaking blind reviews) and my editor colleagues, Meg Burton, Lindsay Carey, Christopher Swift and Mark Newitt.

References

Berryman, J. W. (2012) The Complete Guide to Godly Play. Denver, CO: Moorhouse Education Resources.

Bryden, Christine (2012) Who Will I Be When I Die? London: Jessica Kingsley.

Genova, Lisa (2007) Still Alice. New York: Pocket Books.

King, C., and G. Goffin (1971) Will You Still Love Me Tomorrow? Nashville, TN: Lyrics Sony/ATV Music Publishing LLC.

Swinton, John (2012) Dementia: Living in the Memories of God. Grand Rapids, MI: Eerdmans.

Note

1. John Swinton is Professor of Practical Theology and Pastoral Care in the School of Divinity, History and Philosophy at the University of Aberdeen, Scotland. He is also a co-editor of Health and Social Care Chaplaincy.

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