Plate Nº 90 · recorded October 10, 2026

Health & Medicine ResearchReported finding

Dementia Diagnosis Lowers Odds Your Care Wishes Will Be Followed

A survey of nearly 6,000 U.S. adults found people were 19 percentage points less likely to recommend life-sustaining treatment for patients with dementia, even when an advance directive requested it.

By Marcus Bennett4 min read752 words

In brief

  1. Participants were about 19 percentage points less likely to recommend life-sustaining treatment for patients with dementia.
  2. The survey included nearly 6,000 U.S. adults and was published in JAMA Network Open (DOI: 10.1001/jamanetworkopen.2026.37691).
  3. With a directive requesting life-sustaining care, participants recommended such treatment in 41.0% of dementia scenarios versus 66.3% for patients without dementia.
  4. Previous research suggests more than two-thirds of older adults may someday rely on someone else to make end-of-life medical decisions.

People were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without the condition — even when the patient's advance directive explicitly requested that treatment. That is the central finding of a new study from the University of Colorado Anschutz, published in JAMA Network Open, based on a survey of nearly 6,000 U.S. adults.

The research examined how four factors shaped recommendations about end-of-life care: whether the patient had dementia, whether they had an advance directive, what a physician recommended, and the surrogate decision-maker's own preferences. An advance directive is a document recording a person's wishes for future medical care in case they can no longer communicate. A surrogate decision-maker is the person who makes health care decisions on a patient's behalf.

How big was the dementia effect?

In the randomized online experiment, participants reviewed scenarios involving seriously ill, hospitalized older adults. Researchers varied the patient's dementia status, the contents of any advance directive, and the physician's recommendation.

The numbers show a clear and persistent gap. For patients with dementia and no advance directive, participants recommended life-sustaining treatment in just 15.6% of scenarios. When a directive requested life-sustaining care, that figure rose to 41.0% — far short of full compliance with the patient's stated wishes. When the directive requested comfort-focused care, participants recommended life-sustaining treatment in 7.6% of scenarios.

Patients without dementia fared better across the board. Participants recommended life-sustaining treatment in 38.9% of scenarios with no directive, 66.3% when a directive requested it, and 14.4% when a directive requested comfort-focused care.

In short, the documented wishes moved decisions — but a dementia diagnosis pushed them down in every scenario.

What drives the gap?

The study's lead author points to assumptions about life with dementia. "People's assumptions about what life is like with dementia appear to play an important role in how they think about treatment decisions," said Lauren Hersch Nicholas, Ph.D., MPP, professor of medicine in the division of geriatric medicine at the University of Colorado Anschutz School of Medicine.

"That's important because a patient's wishes may not be reflected in the care they ultimately receive if the person making decisions for them has a different view of what quality of life means," Nicholas said.

The findings carry weight because surrogate decision-making is common at the end of life. Previous research suggests that more than two-thirds of older adults may eventually face a situation in which someone else must make medical decisions on their behalf — yet many have never designated a surrogate or documented their preferences.

Do advance directives still matter?

Yes, according to the data — they just aren't the whole picture. Directives clearly shifted recommendations in both directions, toward and away from life-sustaining treatment, for patients with and without dementia alike.

"Some of the things we think are important in advance care planning really did move the needle," Nicholas said. "Having a document that clearly states your wishes mattered. But so did the preferences of the person making the decision."

That result, the researchers argue, makes the choice of surrogate critical. Patients should pick someone who understands their values and is willing to follow their wishes rather than substituting personal preference.

The study has limitations worth keeping in mind. Participants responded to hypothetical scenarios rather than making real decisions under emotional stress, and the study measures recommendations, not the care patients actually received. Whether the same 19-point gap appears in hospitals and clinics remains an open question.

What should patients do?

For Nicholas and her colleagues, the message is that planning must be ongoing, not a one-time paperwork exercise. "Advance care planning isn't just about filling out a document and putting it in a drawer," she said. "It's about having ongoing conversations about what matters to you, making sure the person you've chosen as your surrogate understands those values and revisiting those conversations as your health and circumstances change."

She added: "We need more and better conversations about these decisions. It's not enough to ask whether someone has an advance directive. We need to understand whether that directive reflects what they would want now and whether the person making decisions for them understands what they would want."

The study appears in JAMA Network Open (2026), DOI: 10.1001/jamanetworkopen.2026.37691.

via Medical Xpress (Source)

Filed under

  • dementia
  • advance-directives
  • end-of-life-care
  • surrogate-decision-making
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Marcus Bennett

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News editor covering marketplaces and e-commerce at SciBeat.

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