When Dementia Changes How We See Life

If someone you love developed dementia, would you begin to see their life differently?

Would you assume they were suffering more than they were? Would you believe they no longer understood what was happening around them? Would you begin making decisions based on the diagnosis rather than on the person you had known for years?

These are uncomfortable questions, but a recent study published in JAMA Network Open suggests they are questions we need to ask.

Researchers presented nearly 6,000 adults with treatment decisions involving seriously ill older people. Some of the hypothetical patients had dementia; others did not.

The difference was striking.

Participants were considerably less likely to recommend life-sustaining treatment for a person with dementia than for someone without dementia. Even when an advance directive specifically requested life-sustaining care, respondents were less likely to honor that preference when the person had dementia.

The study does not tell us that life-sustaining treatment is always the right choice. Often it is not. Comfort-focused care can be exactly what a person wants and needs. The troubling issue is something deeper: the diagnosis itself appeared to influence how people judged what kind of life was worth extending.

That should make us stop.

Dementia can change memory, language, judgment, perception, and the ability to communicate. But it does not erase the person. Preferences remain. Relationships remain. Pleasure remains. Fear remains. The need for belonging remains. A familiar voice, a favorite song, a hand held at the right moment, the pleasure of sitting in sunlight or watching a dog cross the room may still carry meaning long after conventional conversation becomes difficult.

Yet when we begin to see dementia before we see the person, assumptions can quietly enter our decisions.

We may assume that someone no longer understands. We may assume that their life no longer has sufficient quality. We may assume that what we would want in their situation is what they would want.

This new study suggests that those assumptions may matter even when a person has taken the time to document their wishes.

That is an important lesson for all of us.

Advance care planning is more than signing a document. It requires conversations. What does a good life mean to me? What would I be willing to live with? What matters enough that I would want treatment continued? Under what circumstances would comfort become my priority?

And perhaps most importantly: does the person I have chosen to speak for me truly understand my values, or will they unknowingly substitute their own?

For those of us who care for people living with dementia, there is another lesson.

We need humility.

We do not always know what remains within another person simply because they can no longer tell us in familiar ways. Emerging research on lucidity in advanced dementia has already challenged assumptions about capacities we once believed were permanently lost. A person who appears unreachable may still surprise us with recognition, emotion, memory, or meaningful communication.

Human-centered dementia care begins there, with the willingness to remain curious about the person.

It asks us to look beyond the diagnosis and continue asking: Who is this person? What matters to them? What gives them comfort, pleasure, identity, and meaning? What have they told us about how they want to live and how they want to die?

Dementia changes a life.

It should not automatically change the value we place upon it.

If you are caring for someone living with dementia, working in dementia care, or looking for ways to create a more human-centered approach, we would be glad to hear from you.

To learn more, share your experience, or explore education and resources, contact Barbara Huelat or Ruth Shea through Taming the Chaos of Dementia Institute at tamingthechaosofdementia.org.

Together, we can continue changing the way we see, support, and care for people living with dementia.