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In a survey experiment of nearly 6,000 U.S. adults, participants were less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without dementia. Advance directives influenced recommendations but did not erase the difference; surrogate decision-makers’ own preferences also mattered.
A randomized survey of nearly 6,000 U.S. adults found that respondents 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 called for that treatment. The study, published in JAMA Network Open, found that a patient’s documented wishes did not fully determine recommendations made by someone considering care on their behalf.
Researchers presented participants with scenarios involving seriously ill, hospitalized older adults and varied whether the patient had dementia, what an advance directive said, and whether a physician recommended treatment. The experiment measured participants’ recommendations in those hypothetical situations; it did not track treatment decisions or outcomes for actual patients.
For patients with dementia, respondents recommended life-sustaining treatment in 15.6% of scenarios without an advance directive. 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 results indicate that directives influenced recommendations, but did not make them identical across the dementia and non-dementia scenarios. The study also found that the surrogate’s own preferences shaped recommendations. Its lead author, Lauren Hersch Nicholas of the University of Colorado Anschutz School of Medicine, said both a clearly stated directive and the decision-maker’s preferences affected responses.
When Directives Meet Dementia
An advance directive records a person’s preferences for care if they later cannot communicate, while a surrogate may have to interpret those preferences during a serious illness. In the survey, participants’ recommendations varied by dementia status even when scenarios included a directive. The decision-maker’s preferences also affected recommendations.
The study does not establish that patients with dementia receive less treatment in hospitals, or that respondents’ hypothetical choices predict clinical practice. It measured recommendations in hypothetical cases and found differences associated with dementia status and directive language. The findings describe differences between documented wishes and recommendations made by others in the scenarios.
advance directive for dementia patients
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How the Survey Tested Care Choices
An advance directive documents a person’s preferences for future medical care if they become unable to make or communicate decisions. A surrogate decision-maker is someone authorized or asked to make health care decisions for a patient in that circumstance. The survey examined how those written instructions interacted with dementia status and other information in a hypothetical case.
The report cites prior research suggesting that more than two-thirds of older adults may face a situation in which someone else needs to make end-of-life medical decisions for them. It also notes that many older adults have not designated a surrogate or documented their preferences. The new study, by Nicholas and colleagues, is titled “Surrogate Decision-Making for Older Adults With and Without Dementia” and was published in 2026.
““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 experiment measured recommendations from survey participants in hypothetical scenarios, not decisions made by clinicians or family surrogates in real hospital settings. It therefore cannot show whether the same differences occur in actual care, how often a directive is followed in practice, or what explains each respondent’s choice.
The report says assumptions about life with dementia may influence decisions, but the supplied findings do not establish which beliefs drove the responses or whether the recommendations would change after a conversation with the patient. The results also do not show that every surrogate will interpret a directive differently. Further research would be needed to connect survey responses with real-world treatment decisions and patient outcomes.
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Advance Care Planning Conversations
The researchers call for advance care planning that includes conversations about a person’s values and choices with the surrogate they have selected. Nicholas said directives should be revisited as health and circumstances change, and that planners should ask whether the decision-maker understands what the patient would want.
The study report does not specify a next research milestone or announce a follow-up study. The survey findings concern recommendations in hypothetical scenarios. Whether conversations with surrogates change recommendations or care in clinical settings remains to be tested.
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Key Questions
What did the study find about dementia and life-sustaining treatment?
In a survey experiment, respondents 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 the directive requested that treatment.
Did advance directives affect participants’ recommendations?
Yes. Recommendations for life-sustaining treatment increased when a directive requested it and decreased when a directive called for comfort-focused care. The directive influenced responses but did not remove the difference associated with dementia status.
Did the study examine actual hospital treatment?
No. Researchers surveyed nearly 6,000 adults using hypothetical patient scenarios. The study measured recommendations, not treatment decisions or outcomes for real patients.
What did the researchers say people can do with these findings?
The study’s lead author emphasized discussing care preferences with the person chosen as a surrogate and revisiting those conversations as circumstances change. The research does not provide individual medical advice.
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