Balancing Risk and Dignity for People with Dementia

Dutch healthcare innovator and humanitarian activist Teun Toebes invites us to see dementia as a societal issue, rather than placing it solely within the healthcare system.

His work centers quality of life, ordinary days, human connection and freedom, alongside traditional measures of care. Drawing on years spent living in a care facility with people living with dementia, as well as fieldwork and documentary storytelling with filmmaker Jonathan de Jong, Teun shows what humane, relationship-first care can look like in practice.

Three Shifts That Could Reinvite People With Dementia Into Community

1. See Dementia as a Societal Issue

When dementia is confined to healthcare, the rest of society can step back.

Teun widens the lens. Community design, culture and public policy may shape a person’s daily life as much as any clinical intervention.

That means neighbors, urban planners, employers, faith communities, artists and families all have a role to play.

As Teun argues, a better quality of life for people living with dementia creates a better society for everyone.

2. Aim for Quality of Life, Not Only Quality of Care

More devices, money and beds do not automatically create a better life.

Teun asks two essential questions:

What are we doing with the resources we already have?

What makes this person’s life feel like a life?

The answers may include a friend to eat with, a door that opens to fresh air, familiar music, physical touch or a walk in the courtyard.

These are meaningful outcomes, even when they do not fit neatly into a medical chart.

3. Normalize Life and Its Risks

The pursuit of zero risk can reduce life to almost no living.

Teun calls for honest conversations with people living with dementia and those who love them about the tradeoffs involved in care.

Which risks are worth taking to preserve freedom, identity and joy?

This approach requires 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 Care, First and Always

Teun’s practice begins with small, consistent actions that restore personhood.

Use the person’s name. Speak directly to them, rather than around them.

Make eye contact and allow time for a response. Communication involves more than words.

Ask better questions, such as:

“What does a good day look like for you?”

Teun also calls for greater honesty in how care settings present themselves.

Glossy brochures and idealized stock photography can create unrealistic expectations for families. They may also distract from what truly sustains quality of life: participation, presence and community.

When the Fear Is Falling

Families and care professionals understandably fear falls.

Teun offers a more nuanced perspective. Falls can be dangerous, but they can also be part of the natural trajectory of aging and dementia.

Without conversations about values and tradeoffs, the system makes decisions by default. That often means adding devices and restrictions that reduce mobility, spontaneity and joy.

Name the Tradeoffs

Ask:

“Are we trying to eliminate every possible fall, or preserve the person’s ability to walk outdoors, even with some risk, because that is part of a good day?”

Define a Good Life Early

Include the person, their loved ones and care professionals in values-based planning.

When difficult choices arise later, everyone can understand those decisions as an expression of care, rather than abandonment.

Track What Matters

Ask for updates about social connection, time outdoors and meaningful activity, alongside incident reports and medical outcomes.

“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 cared for his grandmother at home as she felt her life becoming increasingly limited.

Together, they made values-based decisions, including choices about medication, that honored what mattered most to her.

Her experience is not a template for every family. It demonstrates why ethical choices belong within care and how earlier conversations can protect everyone when difficult decisions arise.

Four Practices to Try This Week

Receive a Compliment

When someone offers praise, pause, breathe and say, “Thank you.”

Allow care to reach you.

Use Their Name

Address the person directly and ask how they prefer to be called.

Define a Good Day

Create a one-page description of what a good day looks like for the person. Write it with them and their family, then share it with the care team.

Begin a Risk Conversation

Identify two freedoms that may be worth some risk, such as walking outdoors, cooking or singing with a group.

Then identify two forms of support that could make those activities safer.

Key Takeaways

Dementia requires societal solutions alongside clinical care.

Quality of life includes freedom, identity, relationships and joy.

Ordinary living always involves some degree of risk.

Care facilities should be honest about what they can provide and keep loved ones involved.

Values conversations should begin early, before a crisis forces families to make decisions without guidance.

Frequently Asked Questions

What Does “Normalize Instead of Medicalize” Mean in Dementia Care?

It means designing life to feel familiar and human, with friendship, movement, fresh air and meaningful activity, rather than automatically adding devices and restrictions in an effort to eliminate every possible risk.

Isn’t Risk Unacceptable in a Care Setting?

Risk is part of being human.

The goal is to balance safety with dignity, freedom and identity through decisions made with the person and their family.

How Can Families Help When They Cannot Visit Every Day?

Ask for clear updates about quality of life, including social connection, time outdoors and meaningful activity, rather than receiving information only when an incident occurs.

Share what makes a good day for the person and which risks may be acceptable in order to help them experience more of those days.