Reestablishing Rhythms of Remembering
A recent documentary on Alzheimer's disease gives us a glimpse into the life of Woody, a deeply forgetful man who walks around his nursing home searching for something or someone. Perhaps he is searching for himself—some sense of who he is or who he was. The program covers his current difficulties with dementia and the better times in the past as a father, husband, and well-loved a cappella singer—all before Alzheimer's took hold of his brain, life, and memory.
In one segment of his story, his wife and daughter drive him to a concert where his old singing group will perform. His severe memory impairment is evident as they the drive to the concert. He asks the same questions over and over. Where are we going? Why are we are going there?
A five-minute health-care appointment can tell us something about what is wrong with us, but it cannot tell us how to live.
Soon after they arrive, the group invites Woody onstage. The leader gives a tribute to Woody's life and influence, words that Woody will quickly forget. Then they ask him to sing a song with them. Woody looks doubtful and confused. He has been living for many years with Alzheimer's, and it seems likely that he won’t remember. But when the singing starts, he joins in, gaining confidence with each line and eventually singing a solo, the audience responding with loud applause and a few tears.
Though he is deeply forgetful, in this moment Woody remembers. He didn't try or intend to remember. He didn't think about it or analyze it. He simply experienced it because a community of people gathered around in love to honor a deeply forgetful man, engaging him in practices that help him remember who he is at a deep, fundamental level, seemingly bypassing the cognitive impairments that cause so much difficulty in his daily life. He likely can't remember to take his medication or how to manage his finances, but maybe these aren't the most important things to remember.
This episode raises fundamental questions about what it means to remember and how people and practices can be arranged to address some of the pain of Alzheimer's—the deep confusion about who we are and where we fit. These are questions we all have to face, given that a person is diagnosed with Alzheimer's disease every sixty-seven seconds in the United States and that, according to recent reports, one in seven people over age seventy have dementia.
As the number of people with Alzheimer's continues to rise, our inability to address the growing need is becoming more apparent. Though we hope and pray for a cure, it will not come soon enough for millions of people in North America living under the weight of this dreaded disease. Our health-care systems are designed to diagnose disease and treat symptoms, but for Alzheimer's, these efforts fall short and our systems of care are struggling and will soon become overwhelmed. What's more, we can diagnose dementia with a high level of accuracy, but we cannot treat it well. The pills, brain scans, and spinal taps of emerging dementia science cannot help us remember. A five-minute health-care appointment can tell us something about what is wrong with us, but it cannot tell us how to live. Families and friends often feel as if they are losing the people they love even while they sit across the room from them. Alzheimer's damages the brain's memory structures so heavily that we often give up on the hope of remembering.
Alzheimer's, Personhood, and Identity
Some have argued that our health-and social-care systems operate on a "defectology" model that overemphasizes deficits and disease while neglecting a broader understanding of the person. But as Jesse Ballenger points out in his analysis of Alzheimer's disease and its history in America, our fixation on defects is skewed by a culture that has grown increasingly "hypercognitive." We value intelligence, reason, and eloquence: characteristics that increasingly define our identity. This makes Alzheimer's more threatening, because with Alzheimer's we lose the cognitive abilities that define our modern identity.
In past centuries, people were defined not by their cognition, but by their relationships with God and other people, and even into deep dementia these identity anchors were not lost. As Ballenger notes, "Prior to the mid-nineteenth century, discourse on old age, including medical discourse, was primarily concerned with relationships that the aged individual maintained with God and the community of faithful. In this discourse, the physical and mental deterioration of old age appears to have generated less fear and anxiety." The critical benefit of this relational and spiritual identity was that even people with significant dementia "retained their essential humanity . . . remaining connected to what were then the wellsprings of human meaning—community and God."
The practices shared by followers of Christ around the world also happen to be practices that are much more accessible to people with dementia...
As Western culture has increasingly viewed personhood in terms of cognition, our churches have followed. In Desiring the Kingdom, James K.A. Smith has persuasively demonstrated that even our churches and Christian education institutions tend to view personhood in an overly cognitive manner, focusing almost exclusively on thought and belief rather than love and desire. Certainly what we think and believe is important, but it is not the whole of our being. How might we think about Alzheimer's and dementia differently if we started from the conviction that we are, first and foremost, creatures of love?
People with dementia represent a segment of our humanity for whom this understanding of the person is critically important. If we are primarily thinkers, defined by our cognitive ability and activity, dementia unmercifully threatens both our identity and our membership in community. But if love precedes and even surpasses thinking, we have hope that even when we cannot think, we can still love and be loved by others, and this love will define and sustain us.
What does this have to do with remembering? Smith further explains that we are shaped not just by our thought but also by what we do, particularly what we do repeatedly. We are shaped by practices and habits that form our character and even the core of our being. Some behaviors and practices have little significance (thin habits), but others (thick habits) "play a significant role in shaping our identity, who we are," he says. "Engaging in these habit-forming practices not only says something about us, but also keeps shaping us into that kind of person."
Maintaining a sense of identity and significance is a challenge for people with Alzheimer's disease, but addressing the core of our humanity and personhood turns the conversation toward habits that can serve this end. What might be some of the practices that foster habits of remembering and identity? And what social role might the church, as a "community of practice," play for an aging society? Communities of formative practice like the church hold tremendous promise for the common good precisely because they promote the types of remembering and flourishing that touch people with dementia. This is true for three reasons:
- Many thick habits rely heavily on aspects of memory that are less affected by Alzheimer's disease.
- These habits are readily available in the context of church community and are, in fact, part of common liturgical approaches in the Christian tradition.
- These habits prompt a deeper form of remembering about who we are and offer continuing connection to God and our neighbors.
Memory Systems in Alzheimer's Disease
People with Alzheimer's disease have great difficulty remembering recent events, conversations, and new information because the brain system responsible for storing these into long-term memory for later retrieval has been damaged. These memories are like a file that is never placed in a file cabinet. Because it hasn’t been properly filed away, it cannot be retrieved later. This is the most significant deficit in Alzheimer's disease and can be very disruptive to daily life—remembering to take medication, pay the bills, turn off the stove, or the conversation you had with your spouse (e.g., Woody's repetitive questions). Medical interventions for Alzheimer's have been unable to improve this problem.
Fortunately, there are other aspects of memory that are less affected by Alzheimer's. These include long-term autobiographical memory (memory for our stories), procedural memory (memory for habits, skills, actions), and emotional memory (memory for the way we felt). Even though most Alzheimer's care emphasizes memory deficits, these less-affected aspects of memory offer much greater opportunity for flourishing. Although people with Alzheimer's often forget recent and new information (explicit memory), they are better able to remember elements of their life story and more implicit forms of memory, which include forms of memory linked with thick habits and community practices.
Many families affected by dementia have told me that eventually they stopped participating in the life of the church.
Community Practices That Promote Remembering
So what specific habits can help sustain people with dementia despite the continuing progression of underlying brain deterioration? How can church communities draw on these forms of remembering?
Mike Cosper summarizes this well in Rhythms of Grace: "The identity of the church is formed and transformed as it gathers around the Word and responds in the songs, prayers, and fellowship of the saints." Identity and community rely heavily on the practices and habits of worship that have defined the liturgical structure of the church for centuries. The identity of those with dementia can be maintained in the thick practices of that same community.
The practices shared by followers of Christ around the world also happen to be practices that are much more accessible to people with dementia because they rely on spared memory systems and are practices in community. Scripture reading (especially familiar passages), well-known prayers (Lord's Prayer), singing familiar songs and hymns, and even sharing sacraments such as Communion prompt a form of remembering that is both profoundly spiritual and communal. What happened with Woody can happen throughout the church on a regular basis when the church takes time and makes space to include people with dementia.
When we see a person who was agitated or confused begin to recite the cherished words of Psalm 23 or raise their hands while singing about God's amazing grace, this is more than just a useful activity for managing dementia. These remembrances practiced in a community of love provide an enduring and deeper connection. Even these brief forms of remembering remind us that we are loved and provide the opportunity to love. No matter how impaired we may seem, love is a supernatural gift that cannot be taken from us.
We experience a connection to the larger narrative of God's world and rehearse it together in worship so that we will not forget. We rehearse the truths that God fully knows us (Psalm 139), intercedes for us through the Holy Spirit (Romans 8), and promises to never forget us or forsake us, even when we seem to forget him (Isaiah 49:15–16).
These community practices can be beautiful pictures of God's grace and provision in the lives of people with dementia. But why don't we see this every week? Why are we still surprised when we see a very forgetful person remember the Lord? One of the main reasons is that many people with Alzheimer's do not remain a part of the church community after they begin the journey into dementia.
Many families affected by dementia have told me that eventually they stopped participating in the life of the church. Some stop because of embarrassment and shame over their condition. Others find it too difficult to get to church services in light of their disability. Still others find that the church environment, whether social or physical, does not promote participation. Whether the church service is too loud or the people do not know how to engage a forgetful person in conversation, many families and individuals affected by dementia feel pushed to the margins and eventually stop coming altogether. Sadly this also leads them to be forgotten, and eventually no one even calls or visits. The beautiful picture of remembering in a community then only seems like a dream. Instead, people experiences the nightmare of loneliness and isolation, disconnected from the love of God expressed in community. This is the very worst thing that can happen, since the trouble with dementia is that when community is not present these practices cannot often be sustained.
The Church as a Dementia-Friendly Community?
How can we orient our churches and communities to transform the experience of Alzheimer's disease? How can we tie the promises of God to our foreheads and write them on the doorframes that we walk through each day? How can we design church and community in such a way that people with dementia will not be forgotten?
There are a variety of approaches outside of the church that promote inclusion and support for people with dementia. Some modify the physical and social environments to enhance quality of life and emotional well-being. The Green House Movement makes institutional care more homelike, enabling elders to live healthier, happier, and more active lives. Other approaches highlight environmental cues that remind a person where they are and prompt old memories. Still others focus on the social psychology of identity in dementia, arguing that the way we interact with and socially position people with Alzheimer's influences their well-being and dignity.
More recently the concept of dementia-friendly communities has been spreading across Western Europe and is just starting to emerge in North America. These communities include both physical-and-social-design features that are sensitive to cognitive changes and the need for ongoing support. Examples include signs pointing the way to protect people from getting lost, and widespread dementia training for all community members. The basic idea is that a person with dementia will be safe in this community because it was designed with their needs in mind. More importantly, the people in that community have taken active steps to better understand and look out for people with dementia, who are considered valued members of the community.
Imagine what it would look like if our church communities became dementia-friendly communities. What if we took seriously the call to grace, sacrificial love, and the care of the most vulnerable among us? How beautiful would it be if churches led the way in working toward community that sensitively and thoughtfully embraced people who are otherwise overlooked? What specific steps can we take toward this end?
- Learn about the challenges people with dementia and their caregivers face by inviting experts in Alzheimer's and dementia care to educate and train the whole congregation and specific ministries (mercy and social justice, small groups, and pastoral counselors).
- Remain present throughout the journey of dementia. Families affected by dementia long for people to remain present in their lives. Show love and honor by encouraging them to share their story and committing to live out the rest of that story with them. Be consistent. Show up. Call to check in. If you don't see a regular attender at churches services, follow up with a phone call or home visit. People must be so woven into the fabric of a community that even when they journey deep into dementia they will not be left alone.
- Listen for specific needs in each family. When we are present, offering support and care becomes more natural and specific. Whether they need respite care, help with meals, home repair, or someone to mourn with, it all begins with loving presence.
- Develop dementia-specific ministries. These could include caregiver support groups, respite programs, pastoral care, and counseling for those in the early stages of dementia and for caregivers throughout the stages.
- Support and partner with dementia-related nonprofit organizations in the community. Church-wide participation in an Alzheimer's Association Memory Walk sends a powerful message that the church cares about people and the growing dementia crisis. Sponsoring a memory-screening day in partnership with the Alzheimer's Foundation of America demonstrates commitment to reaching to those in need, inside and outside of the church.
- Invite people into the life of the church and provide the opportunity to remember in worship and prayer. Churches can either design special services for people with dementia, or reconsider the structure of their existing services to accommodate the needs of people with dementia (lowering the volume, creating room to move about, providing easy exits, giving shorter sermons, using well-known songs and Scripture passages). Dementia-friendly churches give the opportunity to remember in song, prayer, and Communion by drawing on spared memory systems and the essential loves of each person in community.
Imagine if each family living with Alzheimer's was connected with a group of people who covenanted to journey with them, learn about the disease, dig deeply into the family's story, meet their needs, and help them connect their story to the hope of the gospel. Imagine how powerfully this might affect our communities if this same covenant were offered to families outside of the church.
A pastor wrote to tell me about his mother-in-law who had recently died with Alzheimer's disease. Though she had been severely impaired from a cognitive perspective, she flourished in love and remembrance through the last days of her life. Each night before she went to sleep, she would sit on the edge of her bed and speak very specific and consistent prayers—she prayed for each of her children first, then grandchildren, and finally great-grandchildren, in order. It was clear that this was something she had done for many years prior to developing Alzheimer's disease, and these thick habits had formed her to remember and love in a powerful way even though she had grown very forgetful.
As we anticipate the future dementia crisis, we also have the opportunity to reflect on our own lives, asking critical questions about how we would want to live if diagnosed with Alzheimer's. What would I never want to forget? What practices would be part of my rhythm of remembrance? Who will help me remember?