Dementia: Living in the Memories of God

by John Swinton

Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it.

In this book John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions:
Who am I when I've forgotten who I am? What does it mean to love God and be loved by God when I have forgotten who God is?
Offering compassionate and carefully considered theological and pastoral responses to dementia and forgetfulness, Swinton's Dementia: Living in the Memories of God redefines dementia in light of the transformative counter story that is the gospel.

Genres: Theology, Christian, Nonfiction, Health, Psychology, Disability, Mental Health

308 pages, Paperback

First published November 1, 2012

About the author

John Swinton (born 1957) is a Scottish theologian. He is the Chair in Divinity and Religious Studies at the School of Divinity, History, and Philosophy, University of Aberdeen. He is founder of the university's Centre for Spirituality, Health and Disability. He is an ordained minister of the Church of Scotland and Master of Christ’s College, the university's theological college. Swinton is a major figure in the development of disability theology.

Reviews

[Cathy Lee · Rating 4 out of 5]

Be advised that my rating really applies to the last three chapters. The first chapters were a “scholarly” overview of selected sources from medical, psychology, mental health, and current thinking. It was a slog. In chapter 7 things picked up for me! Here we went deeply into our lives with God. Here we examined the scriptures and saw who we are in a physical fallen world, strangers, being held in the heart of our Savior. The author shares his experience and understanding of how we can practically love our strangers.

[Vanessa · Rating 5 out of 5]

This was a book that took some bravery to read. Some of the best books are the ones that deeply challenge you, unsettle you. I am grateful for John Swinton’s insights, his thoroughness, his compassion, and his unflinching gaze into the often-feared experience of dementia. His writing was so formative to my own understanding and practice as a Christian and a therapist. He unpacks how the experiences of those with dementia often reflect the “broader amnesias” and misaligned values of our culture. Western culture’s prizing of cognition, individual freedom, intellect, and efficiency (which can be reflected in the church as well) may be part of why dementia is such a feared disease. I’d be interested if other parts of the world have the same reactions to dementia as Western culture does. I enjoyed the many side glances and small conversations I had when I read this book in a public place. It made me wonder for how many people there were such personal questions involved with this topic.

This book also made me realize that our personhood and all its implications for care, are deeply unstable if vested in anything (even our closest human relationships!) other than God. We are persons and infinitely valuable simply because He made us, and chose us to be.

I appreciate how the author worked hard to not romanticize the experience of dementia or deny the incredible challenges and losses that are part of the experience. I felt more personally challenged to not romanticize my own takeaways and merely say “Amen” to what I was reading. In some ways, and especially by the time I was done, I felt like the book was one big question directed at the church and myself. Will we do what God calls us to do? To visit and remember, to offer faithful presence and welcome to the ones who forget or are forgotten, knowing we ourselves are in need of the exact same things?

Too many quotes I underlined, but here are a few that landed the most with me:

“Any dissolution of the self reflects a dissolution of community.”

“The ease with which people with dementia can be unfriended raises a dark question: What is it that we actually love in those we claim to love? However, there may be even bigger issues with capacities-based practices of love.”

“Dementia may be a story of great losses, but the fullness of the personhood of sufferers and God’s faithful love for them are not among them.”

“The deep fear of forgetting is overcome by the deeper promise of being remembered.”

“Individual growth towards love and wisdom is slow. A community’s growth is even slower. Members of a community have to be friends of time.”

“In the sacrament of the present moment, we call out the names of those whom we love and seek to offer care, and then we listen. The words “Here I am” can be spoken in a myriad of different ways — through a touch, a gesture, a fleeting look, a noise that most would consider to be meaningless. To be with someone in the moment is to be open to surprise, new possibilities, and the kind of hidden experiences that…are vital in understanding the experiences of people with dementia.”

“I began this book with the question “Who am I?” I’m not sure if I’ve discovered who I am, but the question no longer troubles me.”

“Dementia creates strangers. Love overcomes strangeness.”

[Sagely · Rating 5 out of 5]

I didn't expect care for those suffering from dementia to figure so largely in my work when I began pastoral ministry in a small congregation a year ago. But it has. Little in seminary prepared me for this work.

I'm incredibly thankful for John Swinton's Dementia Living in the Memories of God. Not a how-to book, not tips and tricks and guidelines, Dementia is pastoral theology. How do we talk about and talk to those suffering dementia in light of the God who loves us, who always remembers us?

Swinton's answer focuses on presence and attention. In fact, the book ends with a beautiful meditation on visitation. This is precisely what I needed to hear. How do I care for sisters and brothers with dementia? I sit with them. I observe the sacrament of the present moment. I visit them.

This is a must-read book for anyone in an aging congregation.

[Pearl Loewen · Rating 5 out of 5]

I do not agree with all of Swinton’s theological conclusions, but five stars for a beautiful, thought-provoking interpretation of dementia that runs counter to many of the current narratives. A tantalizing angle not included comes from my experience: a father who did not identify as Christian (in fact, was fairly hostile to it) who developed dementia in his last years. He became so open to the grace and love he had resisted throughout his life, and was uncharacteristically affectionate, emotive, and tender. It’s as if the loss of his strong, proud intellect allowed the gifts of dementia to emerge and transform his relationships. Sadly, he died with the disease six months ago. Through Swinton’s book, I can see many things I did right, and that gives me comfort.

[John Griffiths · Rating 5 out of 5]

This book took a couple of goes to read (it is rather heavy) but boy it was worth it. The author a professor of practical theology is also a trained psychiatric nurse. So the book covers a huge arc between a critique of medical diagnosis and how doctors treat patients they can't cure. To a philosophy of the self and which selves are affected by dementia. To a reflection on the Trinity and how personal identity is mediated. Finishing with practical advice about how to relate to those with dementia. Profound, practical, philosophical and theological I have never read a book quite like it. It is relevant to how humans relate to one another whether or not dementia is involved. Fantastic

[Emily Stem · Rating 4 out of 5]

The last quarter of the book was the most meaningful. The author spent a tremendous amount of time with set up that I think he could’ve done without. There’s also a few tangents that he gets kind of lecture like with that I don’t think really add value to his points. But I’m grateful for his spirit, posture, and his taking on the topic at all. I think the thing I will never forget is the concept that God remembers us, that we exist in the memory of God, therefore we exist at all. I’ve been struggling with the fear that the small, invisible moments are going unnoticed and uncaptured by anyone. But it turns out the highest being in our existence, namely, the Lord, not only orchestrates and ordains these moments, but records every single one of them in his ultimate memory. What could be a black hole turns out to be a library. An eternal one.

[Colleen Jantzen · Rating 5 out of 5]

Very helpful

[Frank · Rating 5 out of 5]

This challenging and helpful work of pastoral theology grapples with the most frightening of illnesses, dementia. John Swinton is the founding director of the Centre for Spirituality, Health, and Disability at the University of Aberdeen. He asks “Who am I when I have forgotten who I am?” To answer this using the lens of theology gives a different viewpoint.

As Swinton writes, “A basic premise of this book is that standard neurobiological explanations of dementia are deeply inadequate…. 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.” He delivers well on this promise and raises important points relevant to other ways in which capacity may be seen as diminished.

The author shows how the various types of dementia must not prevent us from seeing “those who experience this pathology as unique people with feelings, hopes, loves, and joys.”

He accomplishes this beautifully while never diminishing the pain and tragedy, which cannot be avoided. For only in getting real about the pain and loss can we find a way to be with someone in the midst of dementia.

My words here fail to capture this important work of practical theology that has a challenge for the church in our keep to provide both in loving community for those with dementia and those who care for them as well as in seeing how we tend to cut people off from community people experiencing affliction. I can not recommend this book more highly.

[Lydia Griffith · Rating 5 out of 5]

This book took me a couple attempts to read, but it was very much worth the effort. In the same way that, as Wendell Berry says, "racism is bad for racists," I think that our personal and societal treatment of people who are aging and perhaps losing their memory reveals a sickness in all of us. Embarrassment might be the first appropriate thing to feel when we detect the earnestness in our own voices, saying things like, "my mother isn't herself anymore" or "we don't visit because we don't want to remember him this way" or "she's not the woman I married." Euthanasia is a natural solution in the minds of some. And this is part of what Swinton is responding to in this book: what constitutes personhood? Let's get something straight: that person is still your mother, the inarticulate man is still your grandfather, the disoriented woman is exactly the person you married, body and soul. For far too long, the definition of personhood (and the definition of "Christian") has relied far too heavily on one's cognitive ability. But Christian theology is itself a rebuke of this, detecting how quickly this misunderstanding spirals us into anxiously trying to preserve and save ourselves.

This book was profoundly moving to me, not just in the context of working with adults who suffer from dementia, but also thinking of my own standing as a person and Christian. It is good news for ME that God remembers me when I forget God. And it's good news to me that a person is more than his/her vocabulary, more than his/her education level, more than his/her eloquence in prayer. This means we can relate to one another as persons, freely and honestly, without exclusion of anyone based on age or cognitive ability. And I think that to move closer to communing genuinely with our older (and younger) neighbors is a step towards health for all of us.

[Rev. Linda · Rating 5 out of 5]

Another source for my Caring for Alzheimer's patient caregivers in Pastoral Responses to Aging at Brite Divinity: Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it. In this book John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions: Who am I when I've forgotten who I am? What does it mean to love God and be loved by God when I have forgotten who God is? Offering compassionate and carefully considered theological and pastoral responses to dementia and forgetfulness, Swinton's Dementia: Living in the Memories of God redefines dementia in light of the transformative counter story that is the gospel.

[Jay · Rating 5 out of 5]

*for my imago dei paper
*for my spiritual disciplines paper

The tagline--what does it mean to be known and loved by God even when we forget who we are or who God is--is a heavy one. The reframing of dementia, not just as a medical diagnosis, but as a theological thing to work out, brings about both deep compassion and thorough insight from John Swinton.

The turn from loss of personhood (questioning what is personhood) to divine memory holding and affirming human worth that calls upon worship is a profound switch that is much needed in the modern world of devastating diagnoses. I finished this book with multiple moments of tears and a renewed sense to engage with the hard and frail moments of human life--thus making it perhaps one of the best I've read these past few months at the intersection of faith and healthcare.

[Leslie Pettite · Rating 5 out of 5]

My Husband was diagnosed with Dementia when he was 62 years old 2 years ago. The Donepezil did very little to help him. The medical team did even less. His decline was rapid and devastating. It was Memory loss at first, then hallucination. Last year, a family friend told us about Natural Herbs Centre and their successful Dementia Ayurveda TREATMENT, we visited their website natural herbs centre . com and ordered their Dementia Ayurveda protocol, i am happy to report the treatment effectively treated and reversed his Dementia disease, most of his symptoms stopped, he’s now able to comprehend what is seen, sleep well and exercise regularly.he’s  active now, I can personally vouch for  these remedy but you would probably need to decide what works best for you 💜.

[Christopher Trend · Rating 5 out of 5]

A refreshing and thoughtful approach to dementia. I found it helpful having had a mother who had dementia towards the end of her life.
The book not only challenged how we see dementia but also how the church community relates to those with dementia too.
The book goes much deeper by looking a the question “who am I” especially when the me who I think is me begins to disappear.
Whether you have or know someone with dementia, are a pastor, or are someone who wants to know more about who I am in the eyes of God this is a book worth reading.

[Nancy M · Rating 4 out of 5]

starts slow but worth the wait.

Powerful book. The first few chapters are quite technical and as a lay person somewhat over my head, but I was rewarded in persevering. Very hopeful but empathetic. Will help me in my ministry as a lay visitor. The ideas about communal memory and the memory of God as applied to the dementia sufferer were fresh.

[John Hayward · Rating 4 out of 5]

A helpful structure around which to build a practical theology of dementia and how the church might corporately grasp more fully what it means, according to 2 Corinthians 4:16, for us to be those who together “do not lose heart,” knowing that, whatever physical or mental ailments we might experience, “though our outer self is wasting away, our inner self is being renewed day by day.”

[Angela · Rating 4 out of 5]

It gives you guidance on never to forget the person who they where before the illness, and to remind them at all times. It is important to still call them by their name, and spend time in their presence.

[William · Rating 5 out of 5]

Just a really good book to bring the sadness and struggle of dementia to mind. I personally have not had much experience with people with dementia so this book was really helpful for me. Some of the first hand stories from the book were really impactful.

[Becky Nasralla · Rating 5 out of 5]

great insight

[steds · Rating 5 out of 5]

great for thinking through memory, social construction of illness and christian responsibility.

[Justin · Rating 4 out of 5]

More theological and philosophical than practical, but helpful nonetheless. Interesting discussion of what constitutes the self.

[Caroline Ryskiewich · Rating 5 out of 5]

*insert clapping emojis here*

[Zoe Tetz · Rating 2 out of 5]

Read for class again, hard to find his main consensus and did not necessarily derive much

[Geraldine Ricci · Rating 3 out of 5]

I found this book difficult to read because of the complexity of ideas. The last three chapters were the most helpful

[Rhiannon Grant · Rating 4 out of 5]

An engaging, interesting and carefully argued theological assessment of how we currently do, could, and should understand dementia. The core idea is that all our identities are partially in the care of other people, including God, anyway, and that this becomes clearer when we pay attention to people with dementia. I had some idea of the overall position Swinton would take, having heard him talk about this a few years ago, and found the finished product helpful, nuanced, and balanced. As so often with theological books from a mainstream Christian tradition, I had to apply a few pinches of salt to the sections about creation (I suspect Swinton doesn't disagree with me as much as it sometimes sounds like, given his respect for science and medical knowledge in the rest of the book... but he doesn't have space to go into his understanding of creation in detail and that sometimes makes him sound more literal about it than I'm comfortable with). On the other hand, he gets several plus points from me for excellent use of Wittgenstein! Overall, he brings together Biblical, philosophical, and theological ideas with medical, sociological, and psychological approaches in a way which is highly productive.

[Luke · Rating 5 out of 5]

Dementia is more feared than cancer, but this book gives helpful ways to help those who suffer this affliction along with their caregivers. Love them – and love means that “I am glad you exist, I am glad you are here.” Give them the benefit of a doubt – that there is more going on than may appear evident. Visit them, care for them. And, theologically, to help them and their loved ones remember that while they might not remember God, God remembers them. I believe that the issue of dementia and Alzheimer's goes to the very basic roots of the Gospel message - that God comes to us and loves us, that the Holy Spirit prays for us when we can't pray for ourselves. There are many comforting Gospel promises and reminders. There are many helpful theological ways to help with this affliction and I am not sure I recommend this as the first one someone reads, but perhaps the 2nd or 3rd. The book is well researched and there are easier books to read. However, it does outline and support arguments thoroughly – presenting ways that our 21st century culture values people and contrasting that with how we should value people.

[Jan · Rating 4 out of 5]

A tough book to read, with new and complex ideas. I probably should reread it in a few weeks time.

[Mary Wood · Rating 5 out of 5]

An immensely helpful, sensitive Christian book, putting the theology of the elements of this state which is all in the encompassing care of God.

[John · Rating 5 out of 5]

One of the top 5 best books on any subject that I've read in the last 5+ years.