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In a survey experiment involving 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 affected recommendations, but the dementia-related gap remained, and decision-makers’ own preferences also mattered.
Survey participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill hospitalized patient with dementia than for a patient without dementia, even when an advance directive requested that care, according to a University of Colorado Anschutz study published in JAMA Network Open. The findings matter because they suggest a patient’s documented wishes may not, by themselves, determine recommendations made by someone deciding on the patient’s behalf.
The researchers surveyed nearly 6,000 U.S. adults in a randomized online experiment. Participants read scenarios about seriously ill, hospitalized older adults and were asked whether they would recommend life-sustaining treatment. Researchers varied whether the patient had dementia, whether an advance directive called for 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 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 study found that directives influenced recommendations, but did not eliminate the difference associated with dementia. The researchers also found that the surrogate’s own preferences shaped responses. The report does not establish how people make decisions in actual clinical settings; it measures recommendations in survey scenarios.
Why Dementia Status Shaped Recommendations
The results point to a potential tension between a patient’s expressed preferences and a surrogate’s judgment about what care is appropriate. If a decision-maker’s view of life with dementia differs from the patient’s values, the directive may not be the only influence on the recommendation. The study does not show that patients’ wishes were overridden in real-world care, but it identifies a pattern in how survey respondents answered hypothetical cases.
That distinction matters for families and clinicians discussing future care. The findings suggest that recording a preference is one part of planning; communicating the reasons and values behind it to the chosen decision-maker may also matter. The researchers argue that people should discuss their wishes with their surrogate and revisit those conversations as circumstances change.
The researchers cited 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. The source report also notes that many older adults have not designated a surrogate or documented their preferences. Those figures provide context for the potential reach of advance-care planning, but they are not results of this survey.
advance directive for dementia care
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How the Survey Tested Care Choices
An advance directive records a person’s preferences for future medical care if they are unable to communicate or make decisions. A surrogate is the person authorized or chosen to make health care decisions on behalf of someone who cannot make or communicate them. The scenarios in this study tested how those written instructions and other factors affected participants’ recommendations.
The survey compared responses across dementia and non-dementia cases, as well as cases with no directive, a directive requesting life-sustaining treatment, or one requesting comfort-focused care. The reported percentages describe the share of scenarios in which participants recommended life-sustaining treatment; they are not estimates of treatment rates among patients in hospitals.
The study was led by Lauren Hersch Nicholas, a professor of medicine in the University of Colorado Anschutz School of Medicine’s division of geriatric medicine. It was published in JAMA Network Open in October 2026, with DOI 10.1001/jamanetworkopen.2026.37691.
“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 experiment measured recommendations in hypothetical scenarios, not decisions made by actual surrogates in hospitals. The results therefore do not establish how often patients with dementia receive or are denied life-sustaining treatment in clinical practice, or whether a particular directive was followed.
The source report does not provide detailed figures for how physician recommendations affected responses, despite including that factor in the study design. It also does not explain the survey’s demographic breakdown or provide enough information here to assess how closely participants’ answers reflect those of people who commonly serve as surrogates. The reported 19-percentage-point difference is an overall comparison, while the listed percentages describe specific directive scenarios.
More Work on Advance-Care Conversations
The report describes the study’s implications as a need for more robust, ongoing advance-care planning, including discussions about a person’s values and the role of the chosen surrogate. It does not announce a planned follow-up study, clinical guideline change or policy action.
For now, the researchers’ stated next step is better communication: documenting preferences, making sure the decision-maker understands them and revisiting them as health or circumstances change. Whether those conversations change real-world treatment recommendations remains an open question not answered by this survey.
Key Questions
What did the study find?
In an online survey experiment, participants were about 19 percentage points less likely to recommend life-sustaining care for a seriously ill patient with dementia than for a patient without dementia, even when a directive requested that treatment.
Did an advance directive affect participants’ recommendations?
Yes. For patients with dementia, participants recommended life-sustaining treatment in 15.6% of scenarios without a directive, compared with 41.0% when a directive requested that care. A comfort-focused directive corresponded with 7.6% of scenarios.
Was this a study of actual hospital treatment?
No. Researchers surveyed nearly 6,000 U.S. adults about hypothetical cases. The findings describe recommendations in those scenarios, not treatment decisions or outcomes among actual patients.
What did the researchers say families can take from the findings?
Lead author Lauren Hersch Nicholas said planning involves more than completing a document: people should discuss their values with their chosen surrogate and revisit those conversations as health and circumstances change.
Source: rss
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