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In a randomized survey of nearly 6,000 U.S. adults, 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 the study also found that surrogate decision-makers’ own preferences mattered.
Adults surveyed were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for a patient without dementia, even when an advance directive requested treatment, according to a University of Colorado Anschutz study published in JAMA Network Open. The findings suggest that a patient’s documented wishes may not, by themselves, determine how a surrogate views treatment in a serious illness.
The researchers surveyed nearly 6,000 U.S. adults in an online randomized experiment. Participants considered scenarios involving seriously ill, hospitalized older adults. Researchers varied whether the patient had dementia, whether an advance directive requested life-sustaining or comfort-focused care, whether a physician recommended treatment, and the surrogate decision-maker’s own preferences.
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 treatment, and was 7.6% when it requested comfort-focused care. For patients without dementia, the corresponding figures were 38.9% with no directive, 66.3% with a directive requesting life-sustaining treatment and 14.4% with one requesting comfort-focused care.
The report says the broad pattern was similar across patient groups: directives requesting treatment were associated with more recommendations for it, and comfort-focused directives with fewer. Still, participants recommended life-sustaining care more often overall in scenarios involving patients without dementia. The study examined survey recommendations in hypothetical cases; it did not measure actual treatment decisions or patient outcomes.
When Directives Meet Surrogate Judgment
The results point to a practical issue in advance care planning: documented preferences may be interpreted alongside beliefs about dementia and a surrogate’s personal views. The difference identified in the survey matters because a person who can no longer communicate may depend on someone else to speak for them when treatment decisions arise.
For patients and families, the findings support discussing not only whether to use life-sustaining treatment, but also what the patient values and how those values should guide decisions in different circumstances. The study does not show that surrogates routinely disregard directives, or establish why participants made their recommendations. It does show that dementia status remained associated with different responses in the scenarios, even when a directive requested treatment.
That distinction matters for interpreting the research: the survey can identify how participants responded to controlled case descriptions, but it cannot establish how often real-world care departs from a patient’s wishes. Nor does it determine which treatment is right for any particular patient. Decisions depend on individual preferences and clinical circumstances.
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How the Survey Tested Care Choices
An advance directive records preferences for future medical care in case a person later cannot communicate or make decisions. A surrogate decision-maker is someone authorized or chosen to make health care decisions on a patient’s behalf when needed. The study tested how these factors interacted with dementia status, physician recommendations and the surrogate’s own preferences.
Lead author Lauren Hersch Nicholas, a professor of medicine in the University of Colorado Anschutz School of Medicine’s division of geriatric medicine, said the results indicate that assumptions about life with dementia may shape treatment views. She also said the preferences of the person making a decision mattered in the survey. The report cites earlier research suggesting that more than two-thirds of older adults may face a situation in which another person could need to make end-of-life medical decisions for them; it also notes that many have not named a surrogate or documented preferences.
The research was published in JAMA Network Open in 2026, with DOI 10.1001/jamanetworkopen.2026.37691. Its randomized design allowed researchers to vary details in the scenarios, but the responses remain opinions about hypothetical cases rather than observations of clinical practice.
“People’s assumptions about what life is like with dementia appear to play an important role in how they think about treatment decisions.”
— Lauren Hersch Nicholas, study lead author
What Survey Responses Cannot Show
The study reports recommendations in hypothetical scenarios, not decisions made for actual patients. It is not clear from the report how closely these survey responses reflect the conduct of family members, legally designated surrogates or clinicians during real hospital care. The results also do not establish why participants were less likely to recommend treatment in dementia scenarios.
The reported percentages describe the share of scenarios in which participants recommended life-sustaining treatment under specified conditions. They are not estimates of how often patients with dementia receive such care, and they do not show whether treatment matched patients’ actual preferences. The supplied report does not provide further detail on how the findings varied by demographic group or on the separate size of the physician-recommendation effect.
More Conversation in Advance Planning
The researchers say the findings point to a need for ongoing advance care planning, rather than treating a completed directive as the end of the process. Nicholas said people should discuss what matters to them, make sure their chosen surrogate understands those values and revisit conversations as health or circumstances change.
The report does not announce a follow-up study, a policy change or a scheduled next research milestone. For now, the published survey offers evidence about how adults responded to different care scenarios. Further research would be needed to determine how those views relate to real-world decisions and whether planning conversations change care in practice.
Key Questions
What did the survey find about dementia and life-sustaining treatment?
Participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for a patient without dementia, according to the study. The difference remained even when an advance directive requested treatment.
Did advance directives affect participants’ recommendations?
Yes. For dementia scenarios, recommendations for life-sustaining treatment rose from 15.6% with no directive to 41.0% when a directive requested treatment. They were 7.6% when a directive requested comfort-focused care.
Does the research show what happens in actual hospitals?
No. The researchers surveyed responses to hypothetical scenarios. The report does not establish how often real-world treatment decisions follow or depart from patients’ documented wishes.
What do the researchers say people can take from the findings?
Lead author Lauren Hersch Nicholas said advance care planning includes discussing a person’s values with the chosen surrogate and revisiting those conversations over time, not only completing a document.
Source: rss
