To Honor and Bear Witness: A Clinician's Reflection on Dignity Therapy for People Living with Dementia

One late summer afternoon, I asked Henry, a 71-year-old retired teacher with early stage dementia, “When have you felt most alive?” This is one of the core questions in Dignity Therapy, an evidence-based intervention for enhancing legacy. He straightened up when I asked this question. Lips curling into a slow smile, he tilted his head back and his eyes filled with a faraway look. “I've always loved baseball,” he said. He played as a young boy growing up in San Diego, and continued throughout high school and college. He said a shoulder injury in college ended his chances to pursue a baseball career, but mentioned with pride how much he had enjoyed coaching high school students. I smiled with him, happy that the question brought him such joy.

I then looked over at his wife, Jean. A glaring contrast struck me. Normally a gruff man, Henry's eyes lit up as he reminisced, yet Jean sat five feet away, with tears of sadness falling silently down her face. She asked Henry softly in a pleading tone, “What about when our girls were born? What about when we got married? Don't you want to talk about that?” Jean waited for an answer. Henry stared ahead blankly. I heard her tears saying plainly, “This man I created a life with for five decades—how could he forget me and our daughters? Our life was more than baseball!”

I was no stranger to dealing with tense moments during Dignity Therapy. I'd had previous experience providing it to cancer patients. It originated as an intervention for patients in hospice and palliative care, focusing on dignity-conserving tasks such as discussing relationships, words of love and wisdom, cherished memories, and shared values. The process involves a semi-structured life reflection interview with the patient, the creation of a transcript from that interview, and an editing session that allows the patient to ensure the story is told in a way that suits their preferences. At the end of the process, the patient receives a hardbound copy of the life reflection interview to be shared as a keepsake with whomever they choose. ²

For the LifeStories Project, we were piloting Dignity Therapy for people living with dementia—one of the largest growing palliative care populations. Since we were embarking on new territory within dementia care, we requested that the caregiver join the sessions for support and the ability to add any information the person may not readily remember about their history. Having the caregiver join was often helpful, but sometimes presented challenges when the person with dementia answered interview questions in ways the caregiver did not anticipate.

Instances such as the one with Henry and Jean happened throughout the project where I felt the stark difference between the experience of the person with dementia and the caregiver. I was there to perform Dignity Therapy with the person with dementia, but I often heard the unspoken questions from the caregiver—“What about my story? What about us?”—as the gaps in their loved one's memory triggered a desire in them to be able to tell the “whole” story. So often we focus on preserving the dignity of the patient in front of us. In such sad moments, I felt acutely the need to preserve the dignity of them both. But how?

For me, preserving dignity at times like these means holding the tension between the person with dementia—with their decreasing sphere of memory—and the caregiver left increasingly on the outside of it. I noticed how attuned I had to be to what was happening, and how often I used nonverbal communication to respond. In that painful moment with Henry and Jean, I consciously held her gaze for several seconds while breathing deeply in understanding. Then I turned my body toward Henry and leaned in, while smiling and nodding to encourage him to continue. At the same time, I had to hold back my own tears. With each encounter like this, I began to better understand my role; it was not for me to bridge the gap between the experience of the two, but to honor and bear witness to what was happening for both.

What stood out most to me was seeing the caregiver's struggle. Sometimes I wished I could go straight into the caregiver's chest with the precision of a heart surgeon, remove the tired and hurting parts and then sew them back up. I wished I could send them home to heal and know, with some measure of confidence, that in time their breath would be fuller again, their heart would beat with renewed strength, and that the ache would dissipate.

But I can't use a scalpel to cut out sadness. I can't insert a stent to keep the hurt from bursting. I have some tools, but working with people living with dementia and their caregivers, I worried at times if the tools I had were good enough, if I was responding in the right way, and lastly, if I was being helpful at all?

In the case of Henry and Jean, I think my tools were good enough. As I continued Dignity Therapy with Henry, I had conversations with Jean where I was able to validate and normalize her experience while also offering guidance on additional support she could access through Alzheimer's San Diego, a leading partner on this innovative project. Henry was so happy with the book we created together, filled with stories and photos that highlighted what was currently most memorable and meaningful to him. In the end, what the process of Dignity Therapy offered was an opportunity for Henry to feel honored and worthy despite his deteriorating condition. For Jean, it was a way to grapple with her acceptance of his illness, to move away from “this is not who my husband is” and become more comfortable with “this is who he is now.”

Out of all of this emerges the bigger point, that those of us working in palliative care are trying our best to improve the quality of life for the people in our care. I find solace in existential psychologist Rollo May's ³ statement on the paradox of courage, “that we must be fully committed, but we must also be aware at the same time that we might possibly be wrong” (p. 11). I still feel uncertain at times, but I take heart in what I have learned so far. It's not enough to just follow the protocol. I can't be lukewarm and half-hearted. This experience has shown me that providing Dignity Therapy, and palliative care in general, in the best way possible, requires my robust full-bodied presence, a deep commitment to affirming the dignity of others, and the courage to keep going.