Dementia and Christian discipleship

August 23rd, 2022

“Who is Jesus?” asked a woman during worship when we announced that we were going to sing “Jesus Loves Me.” She was a lifelong member of the church and had taught hundreds of Sunday school children about Jesus and had sung the hymn regularly in our worship services. Now, the syllables Je-sus meant nothing to her.

Each week I lead worship with thirty to forty people, most of whom are in the mid-stages of diseases that impair their thinking and communi- cation. Most of them have been participants in churches for six or seven decades. They have known the creeds, participated in the rituals and liturgies, and faithfully attempted to fulfill their baptismal and membership vows to support the church. They have exhibited the marks of Christian discipleship.

Now, many of the observable components of Christian discipleship have disappeared from their daily lives. Church participation has fallen by the wayside. Creeds have been erased from their understanding. For some, Jesus and God are meaningless concepts. Even behavior boundaries have weakened, and a straight-laced pastor now uses profanity and a deaconess makes indiscriminate sexual overtures.

A pastor and chaplain with Alzheimer’s disease laments, “I’m not any good to anybody! I can’t do anything anymore!” His lifelong vocation as an ordained pastor and counselor of the mentally ill has been relinquished as he becomes increasingly dependent on the aid of others. He is but one of many whose Christian discipleship and vocation seem to be in peril as their intellectual and language capacities fade.

Congregations largely view people with dementia as recipients of ministries rather than as participants in ministries. They are objects of mission, not contributors to mission. Once seen as persons with gifts contributing to the health of the congregation, they now are relegated to the “inactive roll” with no expectations to contribute. They become invisible!

Are people with dementia only emeriti Christian disciples? Can they follow a Jesus whom they have forgotten? Do they have a Christian voca- tion, a calling? How can their discipleship and vocation be nurtured and their gifts celebrated and utilized in service to the church’s mission? These are among the issues meriting continuing reflection.

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The Meaning of Christian Discipleship

A class of seminary students listed the following in response to the question, “What does it mean to be a Christian disciple?”

  • To believe in the Apostles’ and Nicene creeds
  • To accept Jesus as Lord and Savior
  • To follow Jesus
  • To share in Christ’s ministry in the world
  • To love God and neighbor
  • To participate in the life and mission of the church
  • To trust in God’s mighty acts of salvation, supremely in Jesus Christ
  • To surrender one’s whole being to God’s grace and will 

“Can a person in the advanced stages of Alzheimer’s or another form of dementia meet these criteria or components?” the professor asked. A long silence ensued before a student responded, “I think so, but it makes me question what it really means to be a Christian disciple. All of these imply intellectual understanding and personal, conscious action or decision.”

John Swinton writes, “Dementia does not affect discipleship or humanness; it reveals ‘hidden’ aspects of both.”[1] Viewing discipleship through the lens of dementia uncovers the “hidden” aspects of discipleship and counters the exclusion of people with dementia from the company of Christian disciples.

A disciple is defined as a “follower,” “student,” or “apprentice” of a mentor. Jesus is called “rabbi,” or teacher, and his disciples learn about and from him. The church’s Christian education enterprise endeavors to teach and form people as disciples of Jesus Christ. Theological education as practiced in recent decades prioritizes intellectual understanding and adept articulation of the doctrines, history, and interpretations of the Christian tradition.

Intellectual knowledge, theological astuteness, and communication are essential components of Christian discipleship. Christian discipleship, however, involves formation as well as information. Being precedes doing and believing. It is estimated that 5 percent or less of what we do results from conscious cognitive reflection. A researcher in cognitive psy- chophysiology affirms, “An enormous portion of cognitive activity is non- conscious, figuratively speaking, it could be 99 percent; we probably will never know precisely how much is outside awareness.”[2] While our conscious intellectual beliefs affect our actions, our actions also impact our beliefs.

Who we are and how we act is largely pre-cognitive. That is, much of our formation occurs unconsciously and results from interaction with the world around us. We are formed by relationships, experiences, practices, and interaction within community. Our being is formed by a complex of stimuli, experiences, and relationships prior to any conscious cognitive reflection, recollection, or knowledge accumulation. We are being formed by the ethos, or prevailing spirit, and character of the culture of our com- munity. Christian formation is “caught” as well as “taught.”

As one pastoral theologian affirms, “Christian learning begins before we think about it and, by implication, it continues after we have ceased to think about it.”[3] Another writes, “[Christian education] is a holistic endeavor that involves the whole person, including our bodies, in a process of formation that aims our desires, primes our imagination, and orients us to the world—all before we ever start thinking about it.”[4]

As we have discussed in previous chapters, the mind, from a Christian perspective, is a way of imagining, orienting, and being in the world. Memory is more comprehensive than the recollection of events, relation- ships, beliefs, and intellectual reflections. We are embodied memory, and our memory is formed by practices, experiences, and relationships of which we are cognitively unaware. The “mind . . . that was in Christ Jesus” (Phil 2:5), which characterizes Christian disciples, is birthed, nurtured, and expressed in the totality of our being as we exist in community.

People with dementia, even in severe stages, embody behaviors and responses that reflect the orientation, imagination, and way of being that exceeds their cognitive awareness. I see it regularly in Linda and among the people in the memory care facility. The embedded practices emerge in activities, unexpected insights, and responses. They know in mysterious ways that defy mere intellectual explanation.

The experience of Helen Keller is instructive. From about age two, she lived without sight and hearing and, therefore, was locked in a world of darkness and silence. She learned, however, to communicate through touch. Her teacher, Anne Sullivan, traced letters on the palms of her hand. Miss Sullivan introduced Helen to the famed preacher Phillips Brooks. With Miss Sullivan translating, the eloquent preacher told her about God who loved her and who came among humanity in Jesus Christ. As the words entered her through the gentle touch of Anne Sullivan, Helen smiled and said, “Mr. Brooks, I always knew he was there; I just didn’t know his name.”[5]

The reality of which Jesus is the incarnation cannot be confined to the language of prescribed creeds or the intellectual grasp of abstract thoughts. Love in all its varied components is the fundamental reality embodied in Jesus the Christ and those designated as Christian disciples. Love is not an abstract thought; it is a way of being that is formed in relationships and experiences. It is expressed in the intricate and complex web of our total existence and the conscious and unconscious dynamic of giving and receiving love.

John Swinton refers to the Apostle Paul’s image of disciples as “letters” written by Jesus on human hearts:[6]

You yourselves are our letter, written on our hearts, to be known and read by all; and you show that you are a letter of Christ, prepared by us, written not with ink but with the Spirit of the living God not on tablets of stone but on tablets of human heart. Such is the confidence that we have through Christ toward God. (2 Cor 3:2-4)

The heart is considered in Hebraic anthropology to be the governing center of human identity and existence; or, as Swinton writes, it is “the seat of the entire person.”[7] So, when Paul considers Christian disciples a “letter from Christ” written “with the Spirit of the living God,” he is declaring that our whole personhood bears witness to the living God.

All this is to say that dementia does not threaten or diminish Christian discipleship. On the contrary, dementia forces us to broaden the scope of discipleship beyond abstract beliefs, intellectual formulation and reflections, and prescribed behavioral activities. Christian discipleship is a way of being that bears witness to and engages with the reality of divine presence and love.

Dementia as Vocation

Sharing in the life and mission of the triune God is humanity’s shared vocation. In the Christian tradition, we are baptized into Christ and, thereby, share in Christ’s ongoing ministry through the power of the Holy Spirit within Christian community. We are recipients and mediators of God’s salvation and participants in the triune God’s holy dance of love, compassion, and justice.

Sharing in God’s life and mission is contextual and communal. That is, our calling is within our own unique circumstances and takes place within a particular community. Each member of the community plays a significant role. The Apostle Paul’s description of the community as a “body” with each part serving an important, indispensable function is appropriate (1 Cor 12). An often-ignored implication of Paul’s image is the indispensability of the “weaker” or “less respectable members.” As the apostle declares, “But God has so arranged the body, giving the greater honor to the inferior member” (1 Cor 12:24b).

Paul’s declaration was written to a community located in the Greco- Roman world that highly valued intellectual acumen, rhetorical eloquence, and physical vitality. His declaration that God has chosen the “weak,” “foolish,” and “despised” as mediators of God’s power, wisdom, and reconciliation was and is counter to the prevailing culture. It is precisely the weakest and least prominent whom God calls as disciples.

In speaking about the vocation of people with disabilities, Jean Vanier writes, “In some mysterious way, they [people with disabilities] are calling to me, to us all, to change. . . . When we meet people with disabilities and reveal to them through our eyes and ears and words that they are precious, they are changed. But we too are changed. We are led to God.”[8] In this mysterious dance of the triune God’s life and mission, those with dementia and other “disabilities” play an indispensable part.

Do people affected by dementia have a divine calling, a vocation? Certainly, caregiving is a sacred vocation! Linda’s diagnosis represented a calling for me to evaluate how I would now best fulfill my baptismal and ordination vows. Her growing dependency and loss of cognitive function- ing was my new context for ministry. My discipleship would now include learning about diseases that caused dementia, being attentive to and supportive of Linda whose discipleship had included support and attentive- ness to my ministry, and sharing my own learning and experience with others. It meant relinquishing a cherished faculty position, narrowing the circle of institutional involvements and relationships, and relocating near our supportive family.

Caregiving is the archetype of Christian discipleship. It is the vocation of all who seek to follow Jesus, who defined discipleship as servanthood (Matt 20:24-28). The model is Jesus washing the feet of the disciples and calling the disciples into a life of humble service (John 13:1-20). Caregivers of the severely disabled are the epitome of self-emptying service, entering the most vulnerable areas of a person’s life and performing the most intimate and unglamorous of services.

In entering that world of total vulnerability, a special bond of unique intimacy often develops. While caring for Linda includes times of frustration as she resists the invasion of her privacy, some of my most profound moments of connection come while brushing her teeth, grooming her hair, or feeding her her favorite ice cream. In that dynamic of giving and receiving, the bond between us grows and I sense a transcendent presence. Linda’s acceptance of my aid and her occasional smile or whispered “thank you” are expressions of her discipleship.

Professional caregivers have become my heroes! Many of them consider their work as a calling, and those persons are easily distinguished from those to whom caregiving is only a job. Caregivers are in short sup- ply, and this represents a major crisis in our aging society. Their role is underappreciated and inadequately compensated. To recognize caregiving as a sacred vocation and caregivers as indispensable participants in the triune God’s dance of love can contribute immeasurably to the quality of life of those with disabilities as well as those who give aid.[9]

Persons in the severe stages of dementia fulfill their discipleship primarily in simply being! As they receive the care of others, they are participating nonetheless in the dynamic dance of love. Their receiving of care expands the caregivers’ capacity to love without reciprocity, enables growth in patience and kindness, calls forth gentleness and attentiveness, and facilitates the presence of God in “the least of these.”

Persons in early- and mid-stage dementia share actively in many forms of ministry. During one of my visits with Linda in the assisted living facility, I found her in the room of another resident. John and Linda shared the same diagnosis, frontotemporal dementia; and his behavior frequently created problems for other residents and staff. He and Linda, however, seemed to intuitively identify with each other. On this occasion, John wasn’t feeling well and was lying in his bed. Linda was standing over him, gently stroking his arm. I paused at the doorway and listened as she said, “I want you to feel better. I love you!” One who received care was providing care!

Another resident was a retired nurse. She routinely made “her rounds” each evening as people were readying for bed. She helped “tuck them in,” and each morning she returned to make their beds. She helped fold clothes, clean tables after a meal, and always sensed when someone wasn’t feeling well. Her embedded practices as a nurse continued and contributed to the well-being of the community.

A man in his nineties and a veteran of World War II was especially at- tentive to Linda during her time in the memory care facility. His days were spent walking around the unit and out into the courtyard. He was soft-spoken, gentle, and always very calm. He seemed to sense Linda’s anxiety and fear and tendency to withdraw from social interaction. So, he came often to her room and asked her to walk with him. He repeatedly told the staff, “If she needs me, you let me know.” His calm and parental presence provided a needed ministry to Linda, and to me.

My friend Dale continues his vocational calling as an ordained pastor and mental health chaplain. Both his father and his brother died after many years of living with Alzheimer’s. Dale knew that he was at risk for the disease, and in 2010, the diagnosis confirmed his suspicions. Though saddened by the diagnosis, he made a conscious decision to “make the most of it.” With the full support and encouragement of his wife, Norma, a social worker with training and experience in gerontology, Dale chose to be open and transparent about his disease. He entered a medical trial at Emory University, thereby contributing to research.

As part of the preparation for the progression of the disease, Dale and Norma moved into a retirement community where continuous care would be available. They participated in the multiple activities with their neighbors. While in the early stage, Dale served as a lector in the Sunday worship services. His sense of humor, sociability, and personal warmth endeared him to the community, and his presence contributed greatly to the quality of the community. He participated in the leadership of the seminary class on pastoral care and dementia and provided a unique perspective to the students.

As Dale’s disease has progressed, the number of his activities has decreased as have his cognitive and language skills. He now lives entirely in the present moment and understands few words. Nevertheless, his social skills remain evident as he meets and greets people with warm smiles and friendly banter. He sings familiar hymns and other music with enthusiasm. He participates in the weekly worship services at Bethany where his wife accompanies hymns on the flute. He greets residents with a cheerful smile and “God is with you.” He assists in serving Communion as he holds the cup as I dip the wafer for each participant. He continues his baptismal and ordained vocation! His way of being is an expression of Christian discipleship.

These are but a few indications that calling and vocation remain amid dementia. As with discipleship, dementia reveals “hidden” aspects of calling and vocation. The call is to be, and it is through our being that we fulfill our calling as disciples and share in Christ’s ministry, even when our context includes Alzheimer’s and other forms of dementia.


Excerpted from Ministry with the Forgotten: Dementia Through a Spiritual Lens by Kenneth L. Carder. Copyright © 2019 Abingdon Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

[1] John Swinton, “Gentle Discipleship: Theological Reflections on Dementia,” ABC Religion and Ethics, July 11, 2016, /10096784.

[2] Daniel Goleman, “New View of Mind Gives Unconscious an Expanded Role,” New York Times, February 7, 1984.

[3] Swinton, “Gentle Discipleship.”

[4] James A. K. Smith, Desiring the Kingdom: Worship, Worldview, and Cultural Formation (Grand Rapids, MI: Baker Academic, 2009). Cited in Swinton, “Gentle Discipleship,” 5.

[5] The story is recounted in various sources, with slight variations in wording.

[6] Swinton, “Gentle Discipleship,” 5.

[7] Swinton, “Gentle Discipleship,” 4.

[8] Stanley Hauerwas and Jean Vanier, Living Gently in a Violent World (Downers Grove, IL: Intervarsity, 2008), 64.

[9] If I were a local church pastor, I would designate a time during the year to recognize and consecrate caregivers during a service of worship, much as churches recognize and affirm teachers and other lead- ers. In the service, I would connect caregiving as a means of living our baptism.

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