Why dementia isn’t only a “care problem,” how quality of life—not just quality of care—should guide decisions, and why accepting everyday risk can be an act of radical bravery.
Dutch healthcare innovator and humanitarian activist Teun Toebes invites us to reframe dementia as a societal issue, not just a clinical one. His work centers quality of life (ordinary days, human connection, freedom) over purely medical metrics, and argues for normalizing life—including its everyday risks—rather than over-medicalizing it. He draws from years of living in a care facility with housemates living with dementia, plus fieldwork and documentary storytelling together with filmmaker Jonathan de Jong, to show what humane, relationship-first care can look like in real life.
Three shifts Teun envisions to reinvite people with dementia back into community
1) Dementia isn’t just a care problem—it’s a societal one
When dementia gets siloed inside healthcare, the rest of us step back. Teun flips the lens: community design, culture, and policy shape daily life even more than any single intervention. The invitation: take it out of the care silo so neighbors, planners, employers, faith communities, artists—all of us—see our role. Because Teun believes a better quality of life for people living with dementia, is a better quality of life for us all.
2) Aim for quality of life, not only quality of care
More devices, more money, more beds—more isn’t automatically better. Teun keeps asking, What do we do with the resources we have? And What makes this person’s life feel like a life? A friend to eat with. A door that opens to fresh air. Music. Touch. A walk in the courtyard. These are outcomes, too—just not the kind that fit neatly on a chart.
3) Normalize life (and its risks) instead of over-medicalizing
Pursuing zero risk can flatten life to near-zero living. Teun’s work calls for honest conversations—with the person and their loved ones—about tradeoffs: which risks are worth taking to preserve freedom, identity, and joy? This isn’t neglect. It’s balance, consent, and dignity.
“If we want quality of life as the result, we must normalize instead of medicalize—and that means accepting ordinary life risk.”
Humanizing, first and always
Teun’s practice begins with small, consistent acts that restore personhood:
- Use names. Speak to the person, not around them.
- Make equal eye contact and wait. Communication is more than words.
- Ask better questions. “What does a good day look like for you?”
He also pushes for honesty in how we present care settings. Glossy brochures and “paradise” stock photos can set up families for disappointment and isolate them from the work that truly sustains quality of life: participation, presence, and community.
When the fear is falling
Families (and staff) understandably fear falls. Teun offers a nuanced view: yes, falls can be dangerous; they can also be part of the real trajectory of aging and dementia. If we never discuss values and tradeoffs, the system decides by default—often piling on devices and restrictions that reduce mobility, spontaneity, and joy. Medicalization of life kills.
What helps:
- Name the ethical tradeoffs up front. “Are we trying to eliminate all falls, or preserve walking outdoors—even with some risk—because that’s part of a good day?”
- Define “good life” together—early. Include the person, care professionals, and loved ones in values-based planning so later choices are understood as care, not abandonment.
- Track what matters. Ask for updates on quality-of-life outcomes (social time, time outdoors, meaningful activity), not just incident logs.
“Living in a care facility isn’t a golden birdcage where nothing happens. It’s an extension of ordinary life—as good as possible, for as long as possible.”
A personal story about choice
Teun has shared how his family was caring for his grandmother at home when she felt her life narrowing. Together they made values-based decisions (including about medication) that honored what she wanted most. It isn’t a template for everyone; it’s a reminder that ethical choices belong inside care, and earlier conversations protect everyone later.
Four practices you can try this week
- Compliment receiving (30 seconds). When someone offers praise, pause, breathe, say “thank you”. Let care land.
- Name + ask. Use the person’s name. Ask how they prefer to be addressed.
- Define a “good day.” Write a one-page “good day” note with the person/family and share it with staff.
- Risk conversation. List two freedoms worth some risk (e.g., walking outside, cooking, singing in a group) and two supports that make those freedoms safer.
Key takeaways
- Dementia demands societal solutions, not just clinical ones.
- Center quality of life—freedom, identity, joy—alongside safety.
- Normalize living (and everyday risk) rather than over-medicalize.
- Be truthful about what facilities can do; keep loved ones in the circle.
- Start values conversations early; advance decisions prevent confusion and harm.
Quick FAQ
What does “normalize vs. medicalize” mean in dementia care?
Design life to feel ordinary and human—friendship, movement, fresh air—rather than layering on devices and restrictions that reduce freedom in the name of eliminating risk.
Isn’t risk unacceptable in care settings?
Risk is part of being human. The goal is to balance safety with dignity and identity—with the person and family, not for them.
How can families help if they can’t visit daily?
Ask for plain-language updates on quality-of-life outcomes (social connection, time outdoors, meaningful activity), not just incidents. Share what makes a good day and which risks feel acceptable to get more of those days.
Teun Tobes will be speaking about dementia care at End Well Radical Bravery on November 20, 2025.