Telling the Story Well: The Moral Obligation of Dementia

As healthy people caring for people with dementia, we can tell a radical story of dementia:  we can tell stories of what remains amidst the wreckage of loss

Despite the mystery of memory loss, love can remember the person.

My grandmother Effie was a strong and gentle woman.  She taught elementary school and sewed all my childhood dresses.  As a kid, I thought she loved Candy Land as much as I did—it turns out, she just loved spending time with her family.  She was small in stature, round like Mrs. Claus, and smelled yummy, like Clinique and fruity gum.  She lived with Alzheimer’s for fourteen years before passing away in the latest stages of the disease.

My family and I cared for my grandmother, but eventually she needed more personal care than we could safely provide.  As Alzheimer’s progressed, her words faded.  She couldn’t tell her own story anymore.   As the people who loved her most, we had to teach her kind, professional caregivers the story of Effie.  We taught them that she was more than just the symptoms of the dementia.

Humans live with and through stories.  As humans, we tell narratives about our day, about who we are, and about the plot of our lives.  Cultural stories also surround us.  These stories that tell us what’s important to our lives; they tell us how to live.   Some of these narratives are so ingrained that we don’t even recognize their influence.

Often the story told about dementia is one of loss.  Truly, those who live with cognitive decline experience systematic losses that are devastating.  But despite these radical losses, as healthy people caring for people with dementia, we can tell a radical story of dementia:  we can tell stories of what remains amidst the wreckage of loss.   Those living with dementia still remain in relationship with the world and with the humans who care for them.

What remains in spite of loss?

  • Those with dementia retain emotional memories; they can experience feelings of shame, embarrassment, fear, and isolation.
  • Persons with dementia can also experience feelings of contentment, success, and love.
  • Folks with dementia also have the ability of accessing the world through their senses.  Smells, sounds, and tactile contact are ways they connect to the world.

As long as the person with dementia draws breath, their bodies access the world.  That body may not be able to converse with words.  But the body remains communicative in its own way.  We who are not experiencing dementia can gaze upon the body with love and recognize its fundamental worth.  Though Alzheimer’s disease cannot be stopped or even slowed, we can share our stories of care and being in relationship with those with dementia.

As a person who is cognitively abled, I am faced with a moral choice.  Will I support or harm the person with dementia through the story I tell?  Will I tell the person’s story well?

Re-narrating the story of dementia is an ethical act in itself.  By telling the story of what remains, we affirm the inherent goodness of the lives of persons with dementia.  As theologian John Swinton says, we can say,

“It is good that you exist.  It is good that you are in the world.”  

Julie Kutac, PhD

Professional Education & Research Specialist

Dr. Julie Kutac received her BS in Molecular Biology with a minor in Theology from Texas Lutheran University, her MA in Religious Studies from Rice University, and her PhD in Medical Humanities from the University of Texas Medical Branch. Dr. Kutac’s research at Rice focused upon the ethics of memory and illness narratives that captured the subjective experience of Alzheimer’s disease. At the Institute for the Medical Humanities at the University of Texas Medical Branch at Galveston, Dr. Kutac continued to explore her interests in aging and elder care as a National Institute of Aging Pre-Doctoral Fellow with the Sealy Center on Aging. Her dissertation focused upon suffering, the elderly, and ways that the medical humanities can improve the practitioner-patient relationship. Dr. Kutac currently works as the Professional Education and Research Specialist for the Alzheimer’s Association, Houston and Southeast Texas Chapter. In this role, she educates health care practitioners and liaises with the Alzheimer’s Association funded scientists in the Texas Medical Center.