The Dignity Paradox in Patient Experience

Lisa Groon
Manager of Quality & Patient Experience, TEDx Speaker
Sanford Health

“Looks like they’re ready for you, Mom.”

It was the first clinic appointment I attended with my mom after her diagnosis. Before that, she had always been the one taking me to appointments, helping me answer questions, and keeping track of details. Now, our roles were starting to shift, and neither of us was quite sure how to navigate that change.

We sat in the waiting room until the nurse called her name, “Susan?”

My mom didn’t respond. I hesitated, unsure whether to step in.

The nurse called again, “Susan?”

That’s when I leaned over and said quietly, “Looks like they’re ready for you, Mom.”

We followed the nurse down a long hallway toward the exam room. Partway there, my mom leaned over and whispered, “Well, I don’t know where she’s taking us.” It was said half-jokingly, half-serious, one of those small comments that hinted at her growing uncertainty.

Once inside the exam room, the nurse opened her laptop and began the intake questions, moving quickly and without looking up.

Have you traveled outside the country?

“No,” my mom answered.

Have you fallen?

“No.”

What’s your date of birth?

She paused. She looked at the nurse. Then she looked at me.

She didn’t answer because she couldn’t. Not because she had never known it. She had known her birthday her entire life. She knew she should know it. But the answer just wasn’t there.

And in that moment, I watched, as her dignity was taken from her.

She turned toward me, not anxious or confused, but exposed. A standard process had quietly become a public reminder of what was slipping away. In that small, clinical moment, my mom was left feeling broken to her core.

In healthcare, we are incredibly good at managing tasks. We assess, document, administer, monitor, and correct. These skills save lives every day. But when cognitive decline enters the picture, task-driven care can unintentionally eclipse something essential: the human experience of the person living inside the disease.

Alzheimer’s disease is frequently framed as a story of loss. Loss of memory. Loss of independence. Loss of identity. That framing seeps into care delivery. When someone can no longer follow instructions, remember details, or move through care “efficiently,” dignity is often the first casualty. Unintentionally, it happens in small ways. Correcting instead of connecting. Rushing instead of pausing. Treating behaviors as problems to solve rather than communication to understand.

What Works: Reframing Dignity in Care

Through my personal caregiving journey and my professional work in patient experience, I have come to believe this truth:

Dignity is not something Alzheimer’s takes away. It is something we choose to give or withhold.

When we shift that mindset, care changes. Here is what that looks like in practice:

• Presence over perfection. Being fully present matters more than getting every detail right. People may forget the facts, but they remember how they felt.
• Joining their reality. Correcting a person with dementia often increases distress. Meeting them where they are builds trust and calm.
• Designing for ease. Systems should adapt to cognitive change, not demand that patients keep up with rigid processes.
• Seeing behavior as communication. Agitation, repetition, or withdrawal are often signals of unmet needs, not noncompliance.

These are not soft skills. They are clinical skills rooted in safety, trust, and outcomes.

Late in my mom’s disease, she cut up a perfectly good pair of my pants. Not hemmed them. She cut them up. Sewing had been part of her life for as long as I could remember. She had made clothes, fixed hems, altered costumes. It was familiar. It was hers.

My first instinct was to fix it, to explain what the pants were, to redirect her, to stop it from happening again. I was tired. The pants mattered. And correction felt easier than pause.

But I stopped myself. Instead, I laughed with her. I thanked her for “helping.” I let it go.

The shift was immediate. The tension in the room disappeared. She felt useful. I felt connected.

Nothing about her cognition changed. But the experience did. Dignity was restored, not because the disease loosened its grip, but because I chose a different response.

Alzheimer’s will continue to challenge our systems, our workflows, and our patience. But it also offers a powerful invitation: to redefine what high-quality care truly means. When we slow down, let go of correction, and choose presence, we protect something sacred. We remind people, families, and ourselves that even as memory fades, dignity does not have to.

About Lisa Groon

A storyteller and optimist, Lisa Groon is dedicated to transforming human experiences. Her career focused on strategic partnerships, direct caregiving, and military leadership has helped her bring a unique perspective to person-centered care. Lisa serves as Manager of Quality and Patient Experience at Sanford Health, based in Sioux Falls, SD. She has had the honor of sharing the good news about person centeredness on many stages, including TEDx, national conferences, and yes, her very own living room. A proud mom of three busy humans and one fluffy cat, she and her husband Jason enjoy finding joy in the little moments.