TL;DR
Get everyday helpers delivered free with Prime
- Fast, free delivery on millions of items
- Prime Video, Amazon Music and more included
- Member-only deals all year
A randomized online survey of 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 patient with dementia than for one without dementia. Advance directives influenced recommendations, but the dementia-related gap remained, and participants’ own preferences as potential surrogates 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 comparable patient without dementia, even when an advance directive called for treatment, according to a University of Colorado Anschutz study published in JAMA Network Open. The findings suggest that a documented preference may not fully determine how a surrogate views care when a patient cannot speak for themselves.
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 to recommend end-of-life care. Researchers varied whether the patient had dementia, what an advance directive said, whether a physician recommended treatment and the surrogate decision-maker’s own preferences.
Among scenarios involving a patient with dementia, participants recommended life-sustaining treatment in 15.6% of cases when no advance directive was present. That share was 41.0% when a directive requested life-sustaining treatment, and 7.6% when it requested comfort-focused care. These figures describe survey responses to hypothetical scenarios, not treatment decisions made for actual patients.
Participants were more likely to recommend life-sustaining treatment for patients without dementia across the directive scenarios. They did so in 38.9% of cases with no directive, 66.3% when a directive requested life-sustaining care and 14.4% when it called for comfort-focused care. The researchers reported that directives affected recommendations, while dementia status continued to shape them.
When Directives Meet Surrogate Judgment
The results matter because surrogates may be asked to make medical decisions when a patient is unable to communicate. The study indicates that a written directive can guide those choices, but it may not remove differences in how decision-makers assess a patient’s situation, including assumptions about life with dementia.
That distinction has practical relevance for people documenting future care preferences and for the individuals they appoint to speak on their behalf. The researchers say it is not enough to complete a form without discussing what it means. A surrogate who understands a patient’s values may be better prepared to interpret those wishes in a specific medical situation. The survey does not establish how often such gaps occur in clinical care, but it highlights a potential point of tension between documented wishes and recommendations made by others.
advance directive for dementia care
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
How the Scenarios 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 selected to make health care decisions for a patient who cannot do so. The study examined how these elements interact with a serious illness scenario; it did not track real-world treatment or measure whether patients received care matching their wishes.
Lead author Lauren Hersch Nicholas, a professor of medicine in the division of geriatric medicine at the University of Colorado Anschutz School of Medicine, said the pattern may reflect assumptions about quality of life with dementia. The report also cites previous research suggesting that more than two-thirds of older adults may face a situation in which someone else could need to make end-of-life medical decisions for them. That figure is background research cited in the report, not a result of this survey.
The paper was published in JAMA Network Open in 2026, with DOI 10.1001/jamanetworkopen.2026.37691. Its findings come from an online experiment, so they show how surveyed adults responded to the presented scenarios rather than documenting the conduct of particular clinicians or families.
“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
medical decision-making guide for surrogates
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
Limits of the Survey Evidence
The study measured recommendations in hypothetical scenarios, not actual medical choices, hospital practices or patient outcomes. The source report does not provide enough detail to determine how closely respondents’ answers would match decisions made under real clinical conditions, or how the results vary across demographic groups.
The reported percentages also do not establish why participants responded differently. Nicholas offered assumptions about life with dementia as a possible influence, but the survey figures alone cannot show what motivated each individual response. It remains unclear how frequently documented wishes are not followed in real care, and whether the same pattern would appear in other populations or types of treatment decisions.
As an affiliate, we earn on qualifying purchases.
More Conversation in Advance Planning
The study report points toward ongoing advance-care-planning conversations as a practical response: people can discuss their priorities with the person they choose as a surrogate, explain how they understand quality of life and revisit preferences as health or circumstances change. Nicholas and her colleagues call for more and better discussions rather than treating the presence of a completed directive as the only measure of planning.
The source material does not identify a scheduled follow-up study, policy change or clinical intervention. Further research would be needed to test whether approaches to these conversations change surrogate recommendations or care received in real settings. For now, the published survey offers evidence about how dementia status, written instructions and surrogate preferences shaped responses to the scenarios it presented.
As an affiliate, we earn on qualifying purchases.
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, including when the directive requested treatment.
Did advance directives affect participants’ recommendations?
Yes. For scenarios involving patients with dementia, recommendations for life-sustaining treatment were 41.0% when a directive requested it, compared with 15.6% when there was no directive. The figures reflect responses to hypothetical cases.
Did the study measure real patient care?
No. It was a randomized online survey experiment in which participants assessed scenarios. It did not examine actual treatment decisions or patient outcomes.
What did the researchers say people can do with this finding?
Lead author Lauren Hersch Nicholas emphasized discussing care preferences with the person selected as a surrogate and revisiting those conversations as circumstances change. The study does not test whether a particular planning approach changes real-world care.
Source: rss
Halloween Picks
halloween
As an affiliate, we earn on qualifying purchases.
