When Ken Carder’s wife, Linda, was diagnosed with frontotemporal dementia, he began to consider the high value society places on intellect, and how capacity relates to identity. He quickly learned that viewing his wife’s dementia solely through a medical lens gave too narrow a focus.
“When she was aware of what was happening to her, she would say, ‘I’m just worthless,’” Carder recalled. “Her self-image began to decline, and I thought, how do I help her and help myself know that the real Linda is still there—the Linda who is known in God’s own grace—that she is made in the image of God as a gift and dementia doesn’t destroy that gift?”
A retired bishop in the United Methodist Church, Carder leaned on his theological and pastoral perspective for guidance. He found solace in having a faith perspective that offers the practice of lament.
Carder did extensive research on Linda’s disease and learned that when people with dementia are isolated from their community, their condition worsens. He recognized that people with dementia weren’t at the center of his own pastoral care efforts.
Seeking to change the status quo and demonstrate how congregations can join in ministry with people who have dementia, Carder created a class at Lutheran Theological Southern Seminary in Columbia, S.C., where he serves as guest professor, called “Dementia Through a Pastoral Theological Lens.”
“I try to emphasize that the people at Bethany are our teachers. We find God in them. We don’t take God to them.”
Following Linda’s diagnosis, the couple moved into the Heritage at Lowman, a Lutheran retirement community in Chapin, S.C., that provides memory support. It gave him an idea for crafting his course. “Here I am living in a Lutheran ELCA community and teaching in an ELCA seminary,” he said. “These two institutions agreed to partner, so the classes are held on the campus of the retirement community.”
Students spend the first part of each class learning about dementia and discussing theological concepts. The class then joins residents of Lowman’s Bethany building, site of its memory care program, to lead a hymn sing and devotion time before interacting with residents individually.
“I try to emphasize that the people at Bethany are our teachers,” Carder said. “We find God in them. We don’t take God to them.”
Visiting the residents can be an anxious experience for some, Carder said, adding that about half his students in the course had no prior experience with people who have dementia. This can be an asset, he explained, because those students don’t interact with residents expecting to provide answers or solve problems. They focus on just being present with them, which Carder said is crucial.
Ministry of presence
Mandy Achterberg, pastor of St. Stephen Lutheran Church in Northglenn, Colo., said the ministry of presence was one of her main takeaways from Carder’s class. “Knowing that the people I was spending time with likely wouldn’t remember anything I said but would experience in their body a memory of feeling loved and cared for that would last long beyond my visit, I learned that having the right words weren’t necessary, but my presence and care most certainly were,” she said.
Throughout the course, students develop a plan for a congregational ministry with people who have dementia. They discuss how memories are held in community and how people can be disciples of Jesus even when they no longer remember him.
This is a point that has stuck with Achterberg. “If we are to take the incarnation seriously, then a mental capacity to remember or know God is not as central as God remembering and knowing us,” she said. “Dementia doesn’t separate us from God.”
Rebekah Swygert Boatwright said her experience in Carder’s course shaped not only her view of dementia within the church but also how she sees herself as a beloved child of God.
“Human worth and dignity are inherent and lie in God’s promises and God’s story,” she said. “When we allow ourselves to let go of how the world sees human value and worth, we are free to be the hands and feet of Christ like never before.”
Now she is applying what she learned in the course by leading a study on Carder’s book Ministry With the Forgotten: Dementia Through a Spiritual Lens (Abingdon Press, 2019) while on internship at Trinity Ecumenical Parish, Moneta, Va. “I plan to have this conversation in any congregation I go to where it seems appropriate,” she said. “Beyond this study, I find myself incorporating the conversations we had in Bishop Carder’s class into sermons, conversations and Bible studies often.”
“If we are to take the incarnation seriously, then a mental capacity to remember or know God is not as central as God remembering and knowing us.”
Carder said congregations need to be intentional about including people with dementia and those who care for them rather than treating them simply as objects of outreach ministry. He noted that the median age of members in mainline churches, including the ELCA, is 52, whereas the median age in the United States is 38.
“We are 20 years older than society, and 10% of people 65 or older is going to have some form of cognitive impairment,” he said. “That means we’ve got a disproportionate number of people in our churches [who will be affected]. These folks can transform us and transform the church if we welcome them at the center of our life and mission.”
Carder believes the church is uniquely positioned to address how people with dementia are treated and to erase the stigma. “As Apostle Paul says in 1 Corinthians 13, knowledge passes away, language ceases, but what remains is love,” he said. “And it’s the church that is in the business of being a community in which love is real, practical, lived out in relationships.”
He said his understanding of love was expanded by his experience with his wife, who could no longer remember him when she died, shortly before their 58th wedding anniversary.
“She taught me that I loved her without expecting anything in return from her,” he said. “And is not that the essence of agape—seeking the well-being of the other simply because of who they are as a child of God? And in so doing, we are participating in the triune God’s dance of love.”
Service of commissioning
Students who complete the “Dementia Through a Pastoral Theological Lens” course participate in a commissioning service. Below is a portion of the liturgy.
Through this class, you have focused attention on the special needs, gifts, challenges and opportunities of relationship and ministry with people affected by neurocognitive diseases. At Bethany, you have experienced God’s special presence and ministry with people whom society and the church tend to diminish and neglect. You have loved them and been loved by them. You have received their gifts and offered the gift of your presence and ministry. They have helped us to become a community of grace and mutual support. They have taught us what the church can be when love dominates relationships.
We ask you now if you will commit to continue what has begun in this class and lead congregations to experience the joy, love and renewal through ministry among people who live with dementia diseases.