REVIEWED BY WOODRUFF J. ENGLISH, MD
Dementia: Living in the Memories of God
By John Swinton William B. Eerdmans Publishing Company, 2012 298 pages, $25
Who am I? How do I really know who I am? These questions are complicated enough under ordinary circumstances to have spawned extensive discourses beyond cogito ergo sum. For a person with dementia and his caregivers, these questions become especially vexing: Am I still me when I have forgotten who I am? How does my ofttimes belligerent and disruptive behavior define me for my caregivers?
In our Western 21st-century culture, we see dementia as a progressive, degenerative neurological condition. Accordingly, we go to authoritative medical sources for guidance and credible explanation that create a scientific framework for our understanding of what we are experiencing.
Enter John Swinton, professor of practical theology and pastoral care at the University of Aberdeen, Scotland, and his 298-page book, Dementia: Living in the Memories of God.
Swinton accepts the scientific explanation for neurological decline, but only as it is in service to a greater understanding of purpose. At the center of his argument is a theologically grounded "redescription" of the person who is living with dementia and how that person lives in community. Swinton challenges a widespread belief that the value of human life is determined by a person's mind, the ability to think clearly and to remember. He proposes that dementia "isn't something that is internal to an individual's neurological makeup… [T]he self remains intact even in the most severe forms of dementia. Any loss of self relates to a failure of community."
His theological position is that "nothing exists apart from God's desire for it to exist," including dementia. He further elaborates, "everything we have and everyone we know exists because of God and is deeply loved by God …. human beings are both wanted and loved irrespective of their physical or psychological condition. It is not any capacity within them that gives them value. Nor is it the value that those around them bestow upon them. ... Human beings' value and their identity are held and assured by the God who created them, who inspired them with God's nephesh, who sustains them in the power of the Holy Spirit and who continues to offer the gift of life and relationship to all of humanity. It is this powerful counter-story that has the potential to provide a firm foundation for dementia care that is authentically person-centered and truly faithful."
Swinton uses the word nephesh pointedly, not because it is often translated from the Hebrew to mean soul, but because it refers to "the in-breathing of God's Spirit into dust, which creates a living entity" and is considered the vital principle of life itself.
To introduce his thinking for the subtitle of the book, Swinton notes that the "idea of being remembered by God is a frequent theme within pastoral literature, and, while not uncontested, it has potential for helping us to understand some vital but often hidden aspects of memory loss in dementia."
He points out that the Hebrew word for memory, zkr, has ontological effects. "When God forgets something, it literally no longer exists …. To be forgotten is to have one's nephesh withdrawn … to no longer be sustained by God."
The author goes on to say, "God's memory is for the purpose of re-membering … to be re-membered by God is to be reconstituted and brought back together, moved from a state of fragmentation to one of wholeness in God: shalom." He then reframes Descartes, saying, "'I think therefore I am ' is replaced with 'We are because God sustains us in God's memory.'"
Swinton's redescription of the relationship of a person with dementia to a community comes from another etymological explanation. The Hebrew word ger is often translated as stranger. A ger is a non-Hebrew who lives among Hebrews as a Hebrew, accepting Jewish values and customs and adopting the Jewish religion. There are two other Hebrew words for stranger, but unlike ger, they refer to strangers who do not try to adjust or assimilate.
Swinton reminds us that "we offer hospitality to the ger because the people of God … have been strangers and have experienced God's care and release …it is not enough simply to include the ger within the community; she must be made to feel welcome, to feel she is no longer a stranger. She remains a foreigner, but it is the task of the community to make her feel included."
He applies this thought further in saying "God welcomes the stranger, the disabled, the one whom society has pushed to the side. God repositions them from the margins of human caring to the center of divine love."
He makes a strong recommendation for visitation and providing a loving presence to bring healing out of the brokenness of dementia. "To learn to rethink dementia in fundamental ways requires that we learn the practice of visitation. It is as we visit one another that we learn what it means to offer and receive hospitality among strangers. It is as we visit one another that we learn the true meaning of the words, 'It's good that you exist; it's good that you are in this world.'"
This book is not an easy read. It is erudite and draws upon more than a score of authorities. However, the dedicated and persistent reader will be rewarded. Most likely, chaplains and spiritual leaders will be drawn to it. Although clinical providers and caregivers for persons with dementia would benefit from exposure to the ideas contained herein, they are unlikely to pick it up. Strong editing would have made the book more inviting to the wider audience who might find this perspective, and the research behind it, both intriguing and challenging.
WODDRUFF J. ENGLISH recently retired as medical director for palliative care for Providence Health and Services, Oregon Region. He currently works with local and national organizations to promote advance care planning.