Finding Grace in the Face of Dementia
by John Dunlop
208 pages (paperback), $18.99
In August 2017, country music legend Glen Campbell died of complications from Alzheimer’s disease. Diagnosed in late 2010, Campbell subsequently commenced his “Goodbye Tour” with a film crew in tow. Their footage became the documentary Glen Campbell: I’ll Be Me, which is a heartfelt and oftentimes shocking log of his deteriorating faculties—and his caregiver and wife, Kim Campbell, as she holds on and yet lets go.
Campbell’s struggle has brought the suffering of dementia patients and their caregivers into the public eye. Dr. John Dunlop (whose parents both endured dementia) brings a medical point of view to his book Finding Grace in the Face of Dementia. Dunlop, an evangelical, begins with six brief descriptive chapters on dementia: terminal diseases and God; the diagnosis; prevention and treatment (there is little as the disease is terminal); and the patient and caregiver experience of the disease. These chapters are immensely helpful to those with little or no exposure to the disease. Dunlop writes succinctly and with unnerving honesty about what lies ahead. The middle chapters address the practice of care for the caregiver and how the church may assist, although Dunlop readily admits the needs of the afflicted may exceed the church’s ability and resources to adequately provide care. The best chapter, as morbid as it may be, addresses end-of-life issues. Here is where Dunlop shines as a physician-ethicist. He advises the reader on the recommended level of care that should be provided at each stage: early stages (seven to ten years of life) with life-sustaining care to support meaningful activities, and later stages with quality of life care versus care that strips away precious time spent in long recovery. Finally, he addresses euthanasia—which is a significant temptation for those with a terminal diagnosis. Being an evangelical, Dunlop believes it is counter to the Christian faith, and he upholds the sixth commandment. Suggestions for further reading and a comprehensive general and Scripture index close out the book.
Sustaining Persons, Grieving Losses: A Fresh Pastoral Approach for the Challenges of the Dementia Journey
by Dianne Crowther
Cascade Books, 2017
246 pages (paperback), $30.00
Dianne Crowther’s book Sustaining Persons, Grieving Losses: A Fresh Pastoral Approach for the Challenges of the Dementia Journey provides a more clinical approach, drawing from the fields of psychology, sociology, and theology. The book is based on her dissertation with voluminous footnotes citing her interaction with interdisciplinary professionals. Crowther’s audience is professional Christian clergy, in contrast to Dunlop’s experiential-theological approach that focuses on the family.
While grinding through current research in dementia care, Crowther helpfully pauses to devote a significant amount of thought to personhood. She locates human personhood in the relational aspect of the imago Dei or the image of God. As the three persons of the Trinity share a personal relationship expressed within the Godhead, so humans also reflect that image in relationships—vertically with God and horizontally with humanity. As those with dementia lose the capability to form and retain their own relationships, it becomes the role of caregivers to create new relationships as the old relationships slip away. This is a daunting task for caregivers! The central chapters introduce numerous case studies for direct caregivers and offers firsthand accounts of the “long goodbye.” The final chapters engage in a theological tussle with published research and her case studies.
All of this leads to a pastoral approach focused on caring relationships that mirror the “body” metaphor in 1 Corinthians 12. The church’s ministry to those with dementia is grounded in being a community committed to creating new loving memories and embracing past memories, while individual members form new relationships to uphold the sufferer’s personhood as an image-bearer of God. The strength of Crowther’s book for the Modern Reformation audience is not in her Barthian pastoral advice and psychobabble ecclesiology, but in her comprehensive bibliography and frontline account of real-life stories of suffering caregivers.
Grace for the Unexpected Journey: A 60-Day Devotional for Alzheimer’s and Other Dementia Caregivers
by Deborah Barr
296 pages (hardback), $14.99
A devotional by Deborah Barr, Grace for the Unexpected Journey: A 60-Day Devotional for Alzheimer’s and Other Dementia Caregivers, is written specifically for Christian dementia caregivers. Although the sixty devotions are not theologically profound, they are quite thoughtful and reflect how caring for a loved one suffering from dementia quickly becomes life altering. Simply turning to the table of contents gives us a quick look into what emotional struggles caregivers experience: irritation, anger, guilt, depression, and weariness. These emotions are countered by redeeming virtues of gratitude, laughter, faithfulness, shalom, peace, and opportunity. This devotional is intended for a particular audience, but anyone providing care for the terminally ill will find it enriching.
Both Dunlop and Crowther end their books with letters to their families: Dunlop, to his wife anticipating that he will succumb to dementia as did his parents, and Crowther with a poem to her mother after a culminating visit in her late stages of dementia. These are difficult letters to read: Dunlop offers instructions on the care he wishes to receive in his anticipated future state of dementia; and Crowther, in sheer frenzy, pours her heart out in disbelief on what has happened to her mother. Both books are highly personal.
Most of us will eventually be affected by dementia as family caregivers, church members, neighbors, and perhaps by our own diagnosis. As an elder in our local congregation who has made a number of care visits to those suffering from dementia, I found each of these books to be deeply human and profoundly helpful. May our congregations embrace members suffering from dementia and their caregivers—providing hope, comfort, forgiveness, and grace as is found only in the gospel of Jesus Christ.
James Lund is an elder in the United Reformed Church and librarian at Westminster Seminary California in Escondido.