Dementia, Pastoral Care, and Theology
by Kenneth L. Carder
During a Maundy Thursday service several years ago, I noticed a poignant change in my wife, Linda. As we moved forward to receive Communion by intinction, she was obviously confused. She didn’t know what to do. She had received the bread and wine countless times, but now it was strange to her. I took the bread, dipped it into the chalice, and placed it in her mouth. The look on her face was one of mournful bewilderment.
As we returned home, she began to cry. “I don’t understand!” she said. I tried to explain that we had been to Communion and remembered Jesus’s Last Supper and the Sacrament. Shockingly, she asked, “Who’s Jesus?”
Linda was trained as a Christian educator, and the church has been central to her life since birth. The beliefs and practices of the Christian community have shaped her and are integral to her worldview, self-perception, identity, and relationships. But dementia slowly chipped away her religious perceptions and practices.
The challenges of dementia are multiple and pervasive. When the brain loses its ability to perceive, process, and communicate, all aspects of living change. Simple tasks become complicated. Words lose their meaning. Memories fade. Thoughts get jumbled. Boundaries crumble. Relationships change. Abstractions become meaningless. Stories disappear.
“What if I forget God?” a retired pastor with early-stage Alzheimer’s asked. “What if I lose my beliefs?” Those are only two of the theological questions raised by many people of faith when diseases invade the brain. The question of theodicy and “why?” emerges as families struggle to find meaning and purpose amid persistent losses and disruptions. Longtime religious rituals may lose their meaning or become impossible to practice.
The medical, financial, relational, and family challenges of dementia dominate the literature. Less attention is given to the theological and spiritual challenges and opportunities. Religion consists of creeds, doctrinal affirmations, beliefs, and individual and corporate practices. Brain diseases strip away the ability to comprehend abstract doctrines and creeds. They interfere with liturgical practices and limit social interaction.
David Keck, in his book Forgetting Whose We Are: Alzheimer’s Disease and the Love of God, contends that dementia is “a theological disease.” Keck’s point is correct that Alzheimer’s disease pushes beyond the medical lens as it impacts the meaning of personhood, wholeness, salvation, sin, and love.
In this book, we will consider the theological challenges and opportunities inherent in the struggle with Alzheimer’s and other forms of dementia. While diseases of the brain challenge many of the components of religious faith and practice, theology contributes to broader perceptions and provides redemptive resources for living with the diseases.
Engaging with dementia during the last decade has impacted every area of my life, including how I do theology. We all do theology from our personal, social, and cultural contexts. Reviewing more than fifty years of ministry, I realize how much the varying contexts have shaped my theological perspectives and pastoral practices. Living with and ministry among people with dementia has been and continues to be an intense theological journey; I share ways the experience is impacting how I understand and do theology.
First, theology is lived more than thought, a way of being more than a way of thinking. Intellectual beliefs, doctrinal formulations, abstract declarations, and reasoned reflections are important; however, they are not the heart and soul of theology. They represent attempts to conceptualize and verbalize realities that surpass the confines of human thought and language. Theology is about transcendent mystery, ultimate meaning, and infinite connections; and those realities exist when thinking, reasoning, and language cease. Pastoral theology observes and appreciates the mystery, meaning, and connections inherent in the concrete experiences of everyday life with its limitations and frailties. How does someone whose mind has been lost “have the mind that was in Christ Jesus”?
Second, lived theology is more implicit than explicit. That is, the theology by which people live and act may not be the same as the consciously held and verbally communicated beliefs and affirmations. Though the goal is congruence between the implicit and explicit theology, motivations and actions result from multiple factors beyond intellectually held concepts. Discovering and connecting with the realities that underlie motivations and actions is a central role of pastoral theology. Where is God present and active in persons’ lived realities, including those who have forgotten God?
Third, theology is embedded in the body as well as in the mind. Theology consists of bodily activities as surely as cognitive reflections, touch as well as thoughts, emotions as surely as ideas, hidden longings and visible behaviors, unconscious responses and chosen commitments. People with dementia express their theology primarily through their bodies more than their intellectual or verbal coherence. Sensitivity to and nurturing of bodily expressed theology is a critical pastoral role. People with dementia teach and express a bodily theology for those willing to listen and learn.
Fourth, in the Christian community, we do theology for and with people. Christian doctrines, beliefs, and practices belong to the faith community, not simply to individuals. Clergy are ordained to preserve, interpret, defend, and proclaim in word and deed the church’s doctrines and practices. It is the community that wrestles with the foundational theological questions—Who is God? Where is God? What is God doing? What is the appropriate response to the nature, presence, and purposes of God? And, it is the community that lives the answers to the questions. When individuals within the community are unable to consciously affirm the beliefs, doctrines, and practices, the community does it for them. For example, those in the advanced stages of dementia lack the capacity to cognitively understand and articulate the theological affirmations. The congregation, however, affirms and practices those affirmations on behalf of those unable to do so. Each Sunday as we gather to worship, the congregation worships on behalf of those unable to participate. While those with cognitive impairment lack the capacity to engage in theological reflection, the congregation engages for them.
Fifth, the core of Christian theology is the practice of love. Christian love is a lived reality, not an abstract intellectual concept. If God is love, then such actions as caring, respectfulness, attentiveness, faithfulness, justice, kindness, and mercy are theological practices. Pastors are doing theology when they are present with the weak and vulnerable as surely as when they are exegeting Scripture or interpreting the doctrine of the Trinity. Forming compassionate and hospitable congregations that love as Christ loves is a most profoundly faithful theological act.
This also means that persons with limited cognitive functioning are no less theologians than professional academic theologians. To enter the world of those with dementia with attentiveness, compassion, and respect is to meet God, who has chosen the weak and vulnerable, the pushed aside and stigmatized as special revelations and profound means of grace.
As we have affirmed, Alzheimer’s and other forms of dementia are vast medical, economic, and societal challenges. There is growing awareness of “the Coming Alzheimer’s Tsunami.” Physicians and other healthcare professionals are keenly aware of the challenges represented by dementia, and researchers are devoting resources to prepare for this “tsunami.” Advocacy groups are emerging to help change public attitudes and policies directed toward people with dementia and those who care for them.
A group largely absent from the important discussions and engagements are local church pastors and congregational leaders. Yet, they are the ones strategically positioned to provide what is most lacking in the current perceptions of and relationships with people living with dementia. Pastors and congregations can broaden the lens through which dementia is viewed, provide caring communities that affirm the inherent worth and dignity of people apart from their mental and physical capacities, and advocate for societal policies and practices that enable the least and most vulnerable to flourish as beloved children of God.
Engagement with the cognitively impaired should not be seen as another responsibility to be added to already overloaded pastors and congregational leaders. Rather, it is an invitation to meet God in fresh ways, to experience the reality behind the church’s doctrines, and to be transformed and renewed by love that endures when knowledge and language cease.
About the Author
Kenneth L. Carder is Ruth W. and A. Morris Williams, Jr. Distinguished Professor Emeritus at Duke Divinity School and Senior Visiting Professor of Wesley Studies at Lutheran Theological Southern Seminary Columbia, SC. Carder is a retired Bishop in The United Methodist Church.