A Letter to Families Walking the Winding Path of Dementia and Faith

A friend recently reached out to me asking for some resources for families dealing with a loved one who has dementia, particularly from a life of faith standpoint. “Does my loved one still have a relationship with God even though they have dementia?” is one of the questions I am often asked. The question both breaks my heart and allows me an opportunity to continue to put what I’m learning in my studies in contact with what I learned in seminary and through my experience as a minister to the aging.

This is the letter I wrote to my friend, with some recommended resources.

Dear Friend,

Let me start off by saying that I am praying for you and your family in this tender time of walking the journey of dementia with a loved one. It is an often arduous journey that many people feel alone and overwhelmed in, and if that is your experience, I’m so sorry and I hope I can be supportive to you.
Dementia is a process of brain change, and often those changes are stark and noticeable, especially as the disease progresses into later stages. It is a painful process to bear witness to, and I commend you and your family for your willingness to be present.
This is an unpublished article I wrote and neglected to edit, some thoughts I penned after attending the 6th International Conference on Aging and Spirituality, in Chicago 3 years ago:

“The word “dementia” comes from the Latin words “de”, meaning out of and “mens,” meaning mind. It literally means “out of mind.” Perhaps this is why our culture has embraced the notion that dementia is a fundamental and horrible change which transforms a person from the vibrant self they once were to a dimly lit shadow of a former glory; flickering glimpses of humanity long gone. Sensationalist TV documentaries and shows portray dementia as the absolute worst of the worst, a living death, a prison of the mind.
People journeying through dementia are indeed imprisoned, in a sense, by stuck mechanisms in the brain that control and regulate memory. Perhaps more detrimental, however, is the prison of poorly informed and therefore, misguided ideas about this illness and what it means for those facing it. As recently as the 1980’s, dementia has been portrayed as a loss of personhood and a sense of self. In seminary, I took upon myself a personal quest to advocate that those facing dementing illnesses be treated as “still a person.”
It seems I may have been wrong. Insistence that someone be treated like a person carries with it, however unintentional, an underlying assumption that there is something fundamentally off about that person which makes them “less than.” Instead of advocating that persons traveling the maze of dementia be treated as people in spite of their illness, maybe we the church should be insisting that personhood and a continuing sense of self be assumed of every person; dementia diagnosis or not.
Dementia does not strip one of her personhood, nor does it rob her of her selfhood. There may be a shift in how a person experiences and relates to himself and the world, but this shift is not a loss of that which makes someone uniquely her or himself. The continuing self may not be expressed in the same way, and the new way of self-expression my come in behavior or personality changes. This can be dreadfully hard on those who love someone who has dementia. It is painful and even isolating to watch a parent, grandparent or a sibling descend into a reality that has not been theirs in the past.
I wonder if it would be possible to reframe these dreaded changes in our loved ones’ and our church congregants’ continuing selves as a gift of getting to know new facets of a loved one’s self as if for the first time; as though embarking on this journey of dementia anew, together? Could we so honor soul and personhood, and self and body that we allow this new version of the continuing self to emerge, blossom and even flourish if this new self were nurtured instead of repressed; embraced instead of feared?
It is an awfully hard task to acknowledge that some things will never go back to the way they used to be. Oh, the pain that must be felt in facing the excruciating reality of change and loss. Certainly, changes in the way things used to be are losses that need to be grieved and given voice to. What if we, the church were to give voice to the changes faced in dementia?

What would it look like for the body of Christ to advocate for selfhood; embracing the concept of the continuing self in thought and in practice?
How would our members whose memories are fading be served by being nurtured in their immediate present (whatever that present may be)? How would caregiver support ministries be transformed if caregivers in our congregations were given permission to grieve changes in their loved ones’ lives and move forward in embracing and nurturing this new expression of a continuing, embodied self?
Are there rituals available to people in our faith communities who are journeying through dementia, and their caregivers, to mark meaningful parts of the journey; Ebenezers of remembrance celebrating and saying goodbye to one expression of self while simultaneously welcoming a new one?
Could a shift in how we think about dementia, how we pray about it, and how we address it in our church communities revolutionize elder care as we know it, particularly our care for those facing dementing illness? I think so.
Christine Bryden is an Australian writer on dementia, who writes from her lived experience of dementia. In a recent workshop at the 6th International Conference on Ageing and Spirituality, Christine said “memory loss does not mean I no longer have a narrative. I have a story to tell, but I need your help.”
May we each be helpers along the way on the communal journey through dementia; keepers of the sacred narratives of our people as we help them to weave meaningful stories from rare glimpses of past through new expressions of present, and into endless possibilities for hope and future.”

This is where I am on spirituality and dementia – I think dementia can be a spiritual experience as much as physical and emotional. It’s so hard to think about embracing something we don’t understand, like dementia which changes our loved one. But the imagination of God, evidenced in the creation of the world and the way we see God’s hand a work, is vast.

As beings made in the image of God, I think that our own spiritual capacity for imagination: imagining new ways to be brothers and sisters in Christ to our fellow Christians who have dementia, imagining new ways to keep our loved ones with dementia tethered to their faith communities and their faith experiences, is vast.
I hope you can find comfort in this: amazingly, gracefully, divinely, memories tied to music and religious experience are the last memories to be touched by dementia; often in the very late stages of the disease.

Someone can be nonverbal, immobile and unexpressive, seemingly lost in the throes of confusion, riding the waves of a sea of mixed memories and mismatched life narratives. Yet, begin to sing to them an old Fannie Crosby gem, and their lips will start to move, or the brightness will come back into their eyes. For people who have lost their ability to swallow, a communion wafer soaked in grape juice will dissolve on the tongue, reminding that person that they belong to a community of believers through the body of Christ broken for them and the blood of Christ poured out for them.
Your loved one may be changing, and may seem lost to this disease. But they’re not.  She’s still there, Jesus is with her – in her darkest times all by herself and especially through the presence of  loving family. His hope is there, just expressed in a different way, maybe ways you can learn and join in, expressing hope together.
I pray that you and your family will find peace in knowing that your loved one belongs to, is beloved of, and held by, a God who never forgets us, even into old age, even into dementia.
Blessings,
– Sara –
Recommended Resources:
– Dementia: Living in the Memories of God, by John Swinton
– Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship, by John Swinton
– God Never Forgets: Faith, Hope and Alzheimer’s Disease, edited by Kim McDonald
– Forgetting Whose We Are: Alzheimer’s Disease and the Love of God, by David Keck
– The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders, by Donna Cohen, Ph.D., and Carl Eisdorfer, Ph.D., M.D.
– Aging, by Henri J.M. Nouwen
– Becoming Human, by Jean Varnier
– Winter Grace: Spirituality and Aging, by Kathleen Fischer
– In Their Hearts: Inspirational Alzheimer’s Stories, by Mary Margaret Britton Yearwood

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