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A randomized survey of nearly 6,000 U.S. adults found participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without dementia. Advance directives influenced recommendations, but dementia status and the surrogate decision-maker’s own preferences also mattered.
A survey experiment involving nearly 6,000 U.S. adults found that participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill older patient with dementia than for a similar patient without dementia, even when the patient’s advance directive requested treatment. The University of Colorado Anschutz research, published in JAMA Network Open, suggests written instructions may not fully determine how people recommend care on someone else’s behalf.
Researchers presented participants with hypothetical scenarios involving seriously ill, hospitalized older adults. The scenarios varied the patient’s dementia status, whether an advance directive called for life-sustaining or comfort-focused care, whether a physician recommended treatment, and the surrogate decision-maker’s preferences. The study measured participants’ recommendations; it did not track treatment delivered to actual patients.
For patients with dementia and no advance directive, participants recommended life-sustaining treatment in 15.6% of scenarios. That share rose to 41.0% when the directive requested life-sustaining care and fell to 7.6% when it requested comfort-focused care. For patients without dementia, the corresponding figures were 38.9%, 66.3% and 14.4%.
The researchers said the pattern indicates that directives affected recommendations but did not erase the difference associated with dementia. The study also found that the surrogate’s own preferences shaped recommendations. Lauren Hersch Nicholas, the study’s lead author and a professor of medicine at the University of Colorado Anschutz School of Medicine, said assumptions about life with dementia may affect how decision-makers interpret treatment choices and quality of life.
Why Directives May Not Settle Care
The findings matter because an advance directive is meant to communicate a person’s preferences if they can no longer make or communicate medical decisions. In the survey, a request for life-sustaining treatment raised recommendations for patients with dementia from 15.6% to 41.0%, but recommendations remained below those for patients without dementia whose directives made the same request. That gap points to a possible tension between documented wishes and other people’s judgments about what care is appropriate.
The results do not show that clinicians or families disregarded actual patients’ directives. They describe responses to hypothetical cases, not observed decisions or patient outcomes. Still, the authors argue that planning should involve more than completing a form: the person selected to make decisions needs to understand the patient’s values and be prepared to represent them, even if their own preferences differ.
advance directive for dementia patients
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How the Survey Tested Decisions
An advance directive records preferences for future medical care in case a person cannot communicate or decide for themselves. A surrogate decision-maker is someone authorized or asked to make health care decisions for a patient in that situation. The study examined how these written instructions interacted with dementia status and other features of a case in participants’ recommendations.
The research was led by Lauren Hersch Nicholas and colleagues and published in 2026 as “Surrogate Decision-Making for Older Adults With and Without Dementia” in JAMA Network Open (DOI: 10.1001/jamanetworkopen.2026.37691). The accompanying report cites prior research suggesting that more than two-thirds of older adults may face a situation in which another person needs to make end-of-life medical decisions for them. That estimate describes the cited prior research, not a result from this survey.
“Having a document that clearly states your wishes mattered. But so did the preferences of the person making the decision.”
— Lauren Hersch Nicholas, study lead author and professor of medicine at the University of Colorado Anschutz School of Medicine
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What the Survey Cannot Establish
The findings are based on hypothetical scenarios and participants’ recommendations. They do not establish what patients with dementia actually receive, how often clinicians or families follow directives in practice, or whether a particular recommendation would match an individual patient’s values. The reported percentage-point difference is an overall finding; the supplied report does not provide further detail about how that gap varied across every scenario.
The source material also does not report the survey’s full participant demographics, how representative the sample was of people who commonly serve as surrogates, or the separate size of the physician-recommendation effect. The results show an association in responses within an experiment, not proof of why participants made those choices or a measurement of care outcomes.
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More Conversations in Care Planning
The study authors call for ongoing advance care planning, including discussions about what matters to the patient, choosing a surrogate who understands those values, and revisiting preferences as health or circumstances change. They say asking only whether someone has an advance directive may miss whether it reflects the person’s current wishes and whether the decision-maker understands it.
The supplied report does not identify a planned follow-up study or a change to clinical guidance. For now, the research adds evidence that directives can shape recommendations while leaving room for dementia status and surrogate preferences to influence them. Whether similar patterns appear in real-world treatment decisions remains an open question.
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Key Questions
What did the study find about dementia and treatment recommendations?
Participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without dementia, even when an advance directive requested treatment.
Did advance directives affect participants’ recommendations?
Yes. For hypothetical patients with dementia, recommendations for life-sustaining treatment rose from 15.6% without a directive to 41.0% when the directive requested it. The directive influenced responses but did not remove the difference associated with dementia.
What role did a surrogate’s preferences play?
The researchers reported that the decision-maker’s own preferences also shaped recommendations. They said this supports choosing someone who understands the patient’s values and is willing to represent them.
Does the study show that patients’ directives are ignored in hospitals?
No. It measured recommendations in a randomized online survey using hypothetical cases, not care delivered to actual patients. It cannot establish how often directives are followed in clinical practice.
What do the researchers recommend for advance care planning?
They recommend discussing care preferences with the person chosen as a surrogate, checking that the person understands the patient’s values, and revisiting those conversations when health or circumstances change.
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