Dignity of Identity — Transforming Dementia Care
Written by Janie Martin, ForgeWorks Dementia Educator
When someone receives a diagnosis of dementia, the world often sees them through the lens of what they can no longer do. But research and lived experience remind us that dementia is not the end of life — it’s a change of life. The concept of “dignity of identity,” introduced by Lennart Nordenfelt, is foundational to responsive care. It’s about recognizing each person’s unique story, abilities, and aspirations, regardless of diagnosis.
What Is “Dignity of Identity”?
“Dignity of identity” refers to the status each of us holds in relation to others, shaped by our past experiences and hopes for the future. For those living with dementia, maintaining this dignity is essential. Studies show that many people without dementia view it as a precursor to social death, but those diagnosed emphasize that life continues — just differently.
Focusing on Abilities, Not Limitations
Care partners play a crucial role in supporting dignity. By celebrating abilities and contributions, we help individuals maintain their identity and purpose.
“I’m still me.”
See the person for whom they are — their gifts, their talents and abilities — not their diagnosis. I recently interacted with a person living with brain change and they reminded me, “Dementia is not the end of my life. It’s a change in my life.”
When care partners focus on what individuals can do, not what they cannot do, especially as it pertains to the activities of daily living, they promote self-worth, independence, and a sense of accomplishment.
Compassionate and Creative Care
Dignity is at the heart of compassionate care. It’s about seeing the person first, not just the condition. When dignity is preserved, it directly impacts well-being and leads to higher quality care. Imagine being unable to express yourself or make decisions — wouldn’t you want to be treated with respect and understanding?
Promoting dignity means guaranteeing individuals feel respected and valued, despite their diagnosis. It’s about reclaiming their stories and supporting their desire to live life to the fullest. A person living with a dementia diagnosis also said to me, “Dementia changes our direction, not us.”
Building Bridges Through Empathy
Imagine being in a situation where you’re unable to express yourself fully or make decisions. Wouldn’t you want to be treated with respect and understanding? Promoting “dignity of identity” means guaranteeing individuals feel respected and valued despite their diagnosis. Reclaiming dignity of these individuals is truly relevant in today’s global rise of dementia. Too often individuals are seen through the lens of the diagnosis and what they can no longer do. This robs the individual of their dignity, erasing the fact that they have their own unique stories and desire to live life to their fullest potential.
Living without brain changes gives us a powerful gift of choice — how we respond to others. Let’s use that gift to build bridges, not walls. Choose empathy over assumption, inclusion over isolation, and love over fear. In doing so, we uplift others and transform ourselves.
Janie brings hands-on experience in providing quality, compassionate nursing care in multiple environments. A licensed practical nurse, Janie is deeply passionate about excellence in person-centered care with a priority focus on the physical, emotional, and spiritual advocacy for people with dementia. Janie was a care partner in her own mother’s journey through dementia, and as a young wife, Janie cared for her husband who suffered cognitive decline due to a brain tumor. These experiences add up to her ability to support from several perspectives. Her certifications include Dementia Practitioner, Alzheimer’s Disease and Dementia Care Trainer, Medication Administration Trainer and Certified Montessori Dementia Care Professional. Through ForgeWorks, Janie offers CDP training to professionals and families serving loved ones living with dementia.
