A conversation with Teepa Snow on stigma, emotional regulation, and what living well with dementia really means. What If Dementia Isn’t a Disease to Fix, But a Disability to Support?
- Mare Ruland
- 13 minutes ago
- 5 min read
Interview and Blog By Mare Ruland, Simon Health
Few people have shaped modern dementia education as profoundly as Teepa Snow. Her videos are watched by millions, her training programs have reached caregivers across the globe, and her practical, compassionate approach has helped countless families navigate one of life's most difficult journeys.
When I sat down with Teepa, I expected to learn more about communication techniques and caregiving strategies. What emerged instead was a much bigger conversation about how we think about dementia itself…and why many of our assumptions may be holding us back.
I found myself nodding along throughout our discussion. Teepa challenged some of the most common narratives around dementia while offering something equally important: hope, grounded in reality.
The Real Reason Teepa Entered Dementia Care
Teepa's path into dementia education wasn't driven by a grand plan. It started with a simple observation: she had a profound ability to connect with people living with dementia.
"I could have things happen when I engaged with people living with dementia and others couldn't," she told me. "People would ask, 'What are you doing? Why can you do that?'"
What followed was years of refining not just what she knew, but how she taught it.
For Teepa, education isn't about memorizing information. It's about practicing skills until they become second nature.
"You can get it intellectually," she explained. "But until you try it out physically, you're not really building the pathways you need to actually be able to use the content when you want to use it in your life."
That philosophy remains at the core of her work today. Knowledge alone isn't enough. Caregivers, or care partners - a term preferred by Teepa - need opportunities to practice, make mistakes, and build confidence.
Dementia Is One of the Most Complex Conditions We Ask Families to Manage
One theme surfaced repeatedly throughout our conversation: society dramatically underestimates the complexity of dementia care.
"We ask families to do it with no training," Teepa said. "No training, no pay, while they're still taking care of children, working jobs, and trying to manage their own lives."
Yet dementia is often treated as though it's a simple diagnosis rather than an incredibly complex neurological condition.
Anyone who has actually supported someone who is living with dementia knows exactly what she means.
Families are expected to navigate changing behaviors, communication challenges, safety concerns, emotional stress, healthcare systems, and financial pressures, often with little guidance.
That gap between what families need and what they're given remains one of the biggest challenges in dementia care today.
Her Most Controversial Opinion? We May Be Looking in the Wrong Place
When I asked Teepa about her most controversial opinion in dementia care, she didn't hesitate.
She believes the field remains overly focused on beta amyloid as the answer to Alzheimer's disease.
"It's a marker," she said. "We need to look at tau. We need to look at glial cells. We need to quit saying what isn't true and get a little more realistic."
Her concern isn't simply scientific. It's personal.
Families are investing enormous amounts of time, money, and hope into treatments that may offer only modest slowing of decline for some people.
"I'd rather you spend your energy, money, and time getting skillful at getting support," she told me, "and finding the right spaces for you to thrive."
While research remains critical, Teepa believes we cannot lose sight of the reality facing families right now: people need practical support today, not just promises about tomorrow.
What If Dementia Is Better Understood as a Disability?
Perhaps the most thought-provoking part of our conversation came when Teepa offered another controversial perspective.
"I think dementia is more of a disability," she said. "An ever-changing disability."
That shift in thinking has significant implications.
Instead of viewing dementia as a simple progression from "competent" to "incompetent," Teepa argues that we should recognize that abilities vary widely from person to person…and even day to day.
Just as schools create individualized plans for students with different learning needs, she believes dementia care should become more personalized and adaptive.
One area she feels receives far too little attention is awareness.
Some people living with dementia recognize their changes and limitations. Others may have little awareness of what's happening.
Those differences dramatically affect care planning, decision-making, and support needs.
Yet we often treat everyone as though they're experiencing dementia the same way.
Emotional Regulation: The Hidden Challenge No One Talks About Enough
One topic that emerged in nearly every interview I've conducted is emotional regulation; for both care partners and people living with dementia.
Teepa offered one of the clearest explanations I've heard.
As dementia affects the brain, changes can occur in areas responsible for threat detection and emotional processing. As a result, situations that seem harmless may suddenly feel threatening.
Meanwhile, care partners are often under tremendous stress.
The result?
Two people unintentionally triggering one another.
"Not being able to regulate yourself means you're reacting as much as I'm reacting," Teepa explained.
Over time, those reactions become habits.
Years before diagnosis, couples and families may already be developing communication patterns built around frustration, conflict, and misunderstanding.
By the time dementia is formally diagnosed, those patterns can be deeply ingrained.
The Power of a Pause
When emotions escalate, Teepa recommends something deceptively simple.
Pause.
Instead of immediately correcting, persuading, or redirecting, reflect back what you heard.
For example:
Person with dementia: "I'm not going in there."
Carepartner: "You don't want to go in there?"
That's it.
No argument. No correction. No explanation.
By acknowledging the message instead of fighting it, the brain often has an opportunity to shift from reaction back toward problem-solving.
"It changes the gear of what's happening," Teepa said.
It's a small adjustment that can dramatically change the tone of an interaction.
Why Community Matters More Than Ever
One of the most important lessons Teepa shared was that no one can do this alone.
Care partnering requires support.
Not because care partners are failing, but because the work is too demanding for any one person to carry indefinitely.
"We've got to build community," she said.
Sometimes another person can step into a difficult situation simply because they're not carrying the same emotional history.
A friend, volunteer, support group member, or trained professional may be able to connect in ways that family members cannot.
That isn't a failure.
It's exactly why community matters.
Through her organization, Positive Approach to Care®, Teepa and her team provide education, support groups, skills training, and certification programs that reach care partners around the world.
What Does Living Well With Dementia Really Mean?
At the end of our conversation, I asked Teepa one final question:
What does living well with dementia mean to you?
Her answer stopped me in my tracks.
"When I get up, there's something in my day that I have to look forward to."
It doesn't have to be something big.
It might be a favorite activity.
A conversation.
A walk.
A shower that feels good.
A visit from family.
A purpose.
For Teepa, living well with dementia isn't about pretending nothing has changed.
It's about finding meaning, comfort, connection, and purpose within the reality that exists today.
It's a reminder that living well looks different for every person.
But at its core, it starts with something remarkably simple:
Having a reason to look forward to tomorrow.
Teepa Snow is a dementia care specialist, occupational therapist, author, and educator with more than 40 years of experience. She is the founder of Positive Approach to Care® and creator of the GEMS® State Model, which offer practical, compassionate ways to better understand and support people living with dementia.
In 2022, Teepa and her daughter, Amanda Bulgarelli, founded Snow Approach Foundation, Inc. The nonprofit is focused on creating an inclusive community that supports all forms of neurodiversity, with a place for connection, education, and support.
Comments