There is a particular kind of seeing that Sonya Barsness possesses, one that developed early and has shaped nearly three decades of work in aging and dementia care. It began in Queens, New York, where she grew up in a multigenerational household, her grandparents a constant presence, the elders of the community woven into the fabric of daily life. This childhood experience planted something in her: a curiosity about who we become as we age, about the inner lives that persist even as the body changes, even as memory begins to fracture.
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As a college student studying gerontology, Barsness volunteered extensively with older adults, drawn to their stories, their particular ways of making sense of the world. She planned to become a neuropsychologist, imagining herself administering cognitive tests, measuring the distance between who people had been and who they were becoming. But when she actually began that work, something unexpected happened. Sitting across from older adults, asking them standardized questions designed to reveal deficits, she found herself wanting something else entirely. She wanted to know who they were. Where they came from. What they thought about things. The questionnaire, with its narrow focus on what people could no longer do, felt suddenly insufficient.
So she changed course. She pursued a master's degree in gerontology with a focus on geropsychology, and began working in nursing homes and senior living communities. What she encountered there disturbed her profoundly. The people living in these facilities did not seem to have good lives. This was especially true for those living with dementia. Barsness looked at them and saw them, she says, for who they were, not for what diagnosis they carried. She did not yet have the language for it, but she recognized their full humanity. And that made their existence in these institutional settings all the more shocking. She knew, with the kind of certainty that arrives without warning and changes everything, that it had to be better.
For nearly thirty years now, Barsness has been working to make that vision real. She moved through policy work and community-based services, searching for new frameworks, new ways of understanding how we might support each other as we age. She became involved with the culture change movement, a national effort to transform long-term care from institutional medical facilities into person-centered communities where people could actually live, not merely exist. Her focus has remained constant: bringing person-centered principles to life in practice, starting with who a person is and what matters to them, then building services and supports around that core understanding.
Through all of this work, one thread has persisted: her focus on people living with dementia and how they can be better supported to live well, wherever they live. What she has learned is that there are pervasive stigmatized views of people with dementia that shape the very systems meant to help them. The medical lens, while important for understanding certain aspects of dementia, carries a risk. It encourages us to see people primarily through what they have lost, through their symptoms and struggles. We lose sight of the person.
This realization has driven Barsness to develop education and support for people living with dementia and their families earlier in the experience, when there is still time to reframe the narrative, to help them navigate dementia in a person-centered way. All of her work, she says, is fundamentally about changing cultural narratives about aging and dementia that are ageist, ableist, overly medicalized, and relentlessly negative. And then applying these shifts in thinking to doing things differently, so that systems and services truly support people wholly, allowing them to live meaningful lives as they age, with whatever cognitive, emotional, or physical challenges they face.
Her work has evolved constantly, shaped by what she continues to learn from older adults, from people living with dementia, from those who support them. Having her own consulting business has suited her temperament as an innovator. It has given her the freedom to pursue different ideas, to create new things, to think outside the box. She writes a blog called Being Heard, where she tries to articulate these ideas and engage in dialogue with others. But she always returns to where she began: starting with the person. Who a person is and what is important to them. From there, she examines how systems support them or fail to, and how those systems might be changed. For her, this includes hardwiring person-centered thinking into products and services, into messaging about aging, into training programs.
The work of changing systems, Barsness acknowledges, can be challenging and frustrating. Systems are complex, and at their root are people you are trying to inspire to think differently. Over the years, this work has tested her resolve. Sometimes it feels impossible to truly change these systems. But then there are the moments that reaffirm her purpose. Being with an older adult living in a nursing home, seeing them for who they are, hearing what they are saying, being reminded of the human in front of her. Hearing from nurse aides about how they lovingly care for someone. Talking to a senior living administrator who genuinely wants to do things differently, who does not know how but is willing to try. Listening to a person living with dementia describe what it has been like, what they want for themselves, what they need from others. These moments, Barsness concludes, are everything.
For several years, she has taught graduate students at Georgetown University and Virginia Commonwealth University, an experience she describes as an honor, an opportunity both to share different perspectives on aging and dementia and to learn from students themselves. Her advice to them is both practical and idealistic. Be curious about the field of aging, she tells them. Explore different positions, organizations, networks. Talk to everyone. Understand that aging is embedded in everything, so a job might not explicitly mention gerontology, but gerontological knowledge is valuable everywhere. Actively seek out the voices of older adults and people living with dementia in your work. The system sometimes forgets to do this, but you can. Consider yourself an advocate in your work, regardless of your specific role. You have the power to change things.
She believes the possibilities in aging are limitless, particularly now with growing focus on entrepreneurship in services and supports. Students and early career professionals, she points out, have the opportunity to create businesses based on their own ideas about what older adults might need or want. Include the voices of older adults in this process, she cautions, but recognize the opportunity. You are not limited by the jobs that exist. You can create your own. And your customer base, given that we are all aging, is remarkably strong.
Interestingly, Barsness does not particularly identify with the title "healthcare professional." Sometimes she has to place herself in that box, she says, but her work exists beyond the traditional healthcare space, even though much of it takes place in senior living and nursing homes. That is because her work takes people out of the conventional healthcare framework, seeing them as more than their age, their diagnosis, their health conditions. Seeing people for all the things they are and can be. The healthcare system can support this vision, but it is not the primary focus. The person is.
What she hopes to see in the future is continued transformation in long-term care and senior living, transformation more aligned with what people actually want, supporting them in living rather than merely receiving care. She thinks we must be creative in our dreams for this. There is a strong history of organizations pioneering new models: the GreenHouse Project, Eden Alternative, Action Pact, Planetree. We need to think big, Barsness insists, and not be limited by what systems have been, but by what they could be. People need connection and community and purpose. They cannot be isolated from other generations.
Every generation brings its own energy and ideas, she observes. They may arrive to this work unrestricted in their thinking as they approach challenges that previous generations have carried forward. She hopes they will use critical thinking and creativity to think differently, to challenge norms, to outline new possibilities.
From her childhood home in Queens to nursing homes across the country, from administering neuropsychological tests she quickly abandoned to consulting work that allows her to innovate freely, Sonya Barsness has followed a single guiding question: How do we see people wholly, especially when systems are designed to see them only partially? It is a question born from a particular way of looking, from seeing her grandparents and the elders in her community not as diminished versions of their younger selves but as fully themselves. It is a question that has led her to spend three decades working to transform not just policies and practices, but the fundamental narratives we tell about aging and dementia, about capacity and worth, about what it means to live well at any stage of life.
The work is not finished. Systems are slow to change, and the cultural narratives she works against are deeply entrenched. But Barsness continues, motivated by those moments when she sits with someone and sees them clearly, when the humanity at the center of all her work becomes visible again, undeniable, and urgent.