Dementia is often introduced to us through one story: Loss.

Loss of memory. Loss of independence. Loss of identity. Loss of the future we thought we had. For families, dementia can bring grief, uncertainty, exhaustion, and heartbreak. For people living with dementia, it can bring changes that are confusing, frightening, and deeply unfair.

That story is real.

But it is not the whole story.

This article brings together two perspectives: Jasmine’s reflections as a nurse researcher studying dementia rehabilitation and access to care, and Tara’s lived experience as a daughter whose parents both lived with dementia. Together, we ask what becomes possible when dementia is no longer told as a single story.

Tara remembers:

“I have many memories of my parents continuing to show who they were, despite their dementia diagnoses. Some of my fondest memories, particularly of my father, were accompanying my parents to live music and dancing events at the facility where they lived. My father loved to dance and seemed to come alive during these experiences. He took pride in dancing with his bride, with me, or with other dance partners, always showing off his best moves. One could not wipe the smile off his face, and his energy showcased his athleticism.

He also enjoyed countryside walks and drives, where he could reminisce about his days living on the family farm. I brought binoculars so we could stop and watch deer or other wildlife along the way. For him, music and nature were therapeutic and soul-fulfilling. They revealed his true essence.”

These are the kinds of moments that rarely fit into the public story of dementia. They do not erase loss, but they remind us that personhood does not disappear at diagnosis.

When dementia is told only as tragedy, something else can be lost: the person’s enduring presence, voice, humour, values, preferences, relationships, creativity, and capacity to live meaningfully. Families, communities, and care systems may begin to lower their expectations, assuming there is “nothing much to do” for dementia.

This is why we need to ask: “Who gets to tell the story of dementia?”

The words we inherit

Jasmine reflects:

During my doctoral research on access to dementia care, I began noticing how powerfully certain words shape what we imagine dementia to be. Dementia was often described through the language of catastrophe: crisis, burden, fear, worse than death, loss of self.

I created a word cloud to capture some of these dominant tragedy narratives represented in public, media, and scholarly language.

Looking at this word cloud, it is easy to understand why people fear dementia or feel alone after diagnosis. If the public story says dementia is only decline, people may stop looking for connection, rehabilitation, creativity, pleasure, community, and support.

But through research and conversations with people living with dementia and care partners, I also encountered another set of words: connection, continuation, gratitude, hope, satisfaction, enjoyment, creativity, relationships, normal, good life.

These words do not deny the difficulty of dementia. They simply refuse to let difficulty become the only truth.

These quieter narratives unsettled my own assumptions. Early in my research, I had not even thought to ask anything positive about living with dementia. Yet, conversations with study participants, especially people living with dementia, kept showing me other sides I had not expected to see.

That omission taught me something important: stigma is not only found in discriminatory words or negative attitudes. It can also appear in the questions we forget to ask and the silences we maintain.

Stigma is not just an attitude. It lives in the stories we tell.

We often think of stigma as something individual: being misinformed, feeling uncomfortable, or discriminating against others. That is part of it. But dementia stigma is bigger than that.

Stigma lives in the stories that circulate around us – in headlines, casual conversations, clinical language, service design, funding priorities, and even family expectations. These stories shape what people believe is possible after diagnosis, and what actually happens next.

Families may hesitate to seek support early because they fear what the diagnosis means. Friends may disappear because they do not know what to say. Professionals may focus mainly on risk, safety, medication, or future care planning, while overlooking rehabilitation, health promotion, and social participation. Services may be designed around managing decline and crises rather than supporting people to continue living, relating, and contributing.

And people living with dementia may be treated as though their own voices no longer count. Their outlook, strengths, and capacity may be silenced.

If stigma is produced in everyday life, then narrative change must also happen in everyday life.

– Hwang & Ernst

For Tara, this harm was not abstract. Tara writes:

“Unfortunately, I have witnessed people with dementia being treated poorly in ordinary but painful ways. Things that once gave people purpose and joy were sometimes taken away or reduced so much that depression, confusion, loneliness, or boredom followed. I also saw people’s opinions and feelings pushed aside in an effort to control them.

One example involved my mother speaking with a priest. My mother desperately tried to share her feelings and frustrations about how she perceived she was being treated by people in her life. Yet, the priest quickly, and harshly, silenced her. Her feelings were invalidated, and the message she received was: accept it – period.

Whether or not my mother's interpretation of how she was being treated was entirely accurate, she deserved to be listened to. Her feelings deserved to be explored. She had turned to someone she trusted for support, but that trust was extinguished, leaving her feeling hopeless.”

This example shows how stigma can appear not only as open discrimination but as dismissal: the refusal to pause, listen, and take a person’s distress seriously.

This is not about pretending dementia is easy

Talking about hope in dementia can be misunderstood. Families may worry that hopeful language erases the real challenges of finding support, accessing services, and simply keeping going day by day.

So let us be clear: this is not about denying loss or performing positivity.

It is about refusing to let loss be the only story.

A fuller story of dementia can hold grief and humour, exhaustion and tenderness, change and continuity, fear and courage, dependence and agency. A person may need more support and still have preferences. A person may communicate differently and still have something to say.

When we widen the story, we widen what care can become.

Care is not only about managing decline or disability. It can also mean creating conditions for connection, supporting remaining strengths, adapting environments, making room for expression, inviting participation, honouring identity, and helping people continue to connect and belong.

Why we are taking dementia to the streets

If stigma is produced in everyday life, then narrative change must also happen in everyday life.

That is the spirit behind Taking It to the Streets, a global initiative of Reimagining Dementia: A Creative Coalition for Justice. The campaign invites communities to challenge fear, shame, and silence surrounding dementia through public-facing conversation, creativity, and storytelling. Rather than replacing one story with another, it asks us to make room for a fuller range of dementia stories – stories of loss, yes, but also stories of care, relationship, humour, resilience, imagination, and belonging.

This September, we are bringing Taking It to the Streets to Calgary.

Through stories, artwork, photographs, poetry, reflections, and public conversation, we hope to create space for people living with dementia, care partners, families, friends, students, health professionals, artists, and community members to ask together:

“What stories about dementia have we inherited?”

“And what new stories can we reimagine to live, care, and belong differently?”

For Tara, this work is also about legacy – about ensuring her parents’ experiences, both painful and beautiful, contribute to change. Tara continues:

“Dementia care educator Teepa Snow wrote, "Until there's a cure, there's care," and this is the message I want the world to hear.

The culture surrounding dementia care needs to change. Emotions and feelings are fundamental human traits that define who we are throughout our lives. I believe we can all do better in valuing those traits and caring for people whose voices and needs are too often overlooked.

Dementia care is more than medical care. A diagnosis should not result in the end of a meaningful and joyful life, although that life may look different over time. Instead, care should be personalized so that lives may continue to flourish.

I envision dementia care changing. This requires us to unite, think differently, and challenge long-standing norms. I am familiar with the harsh realities of the disease and the limited resources that exist, but I do not believe this vision is unrealistic. Highlighting examples of excellent care, especially care that values emotions, relationships, and personhood, can build momentum and help create change.”

This is the spirit we hope to bring to Taking It to the Streets – Calgary, a public invitation to imagine care differently.

Dr. Jasmine Jihye Hwang is committed to expanding how dementia is understood, talked about, and supported in communities. Her work focuses on dementia rehabilitation, stigma, healthcare access, and community-engaged knowledge mobilization.

Tara Ernst is passionate about the need for changes in care for people living with dementia. Her parents both lived with dementia, and her writing reflects the lived realities of caregiving, bereavement, stigma, and the need for fuller public stories of dementia.

Together with the Reimagining Dementia Calgary team, Jasmine and Tara are helping bring Taking It to the Streets, a global Reimagining Dementia initiative, to Calgary during World Alzheimer’s Month.