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Dementia associated with higher advance directive completion and surrogate involvement in end-of-life careStudy compares end-of-life decision-making for older adults with and without dementia

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Key Takeaway
Note dementia associated with more advance directives and surrogate involvement in end-of-life care.

This observational study analyzed Health and Retirement Study exit interview data from 5,389 U.S. decedents aged 50 years or older. It compared end-of-life care patterns between those with dementia prior to death and those without dementia.

Decedents with dementia were more likely to have completed advance directives (81.3% vs. 69.1%, p<.001) and had higher reported decision-making needs in their final days (54.3% vs. 47.2%, p<.001). Children or grandchildren were more frequently involved in care decisions for decedents with dementia (63.9% vs. 45.6%, p<.001). Most decedents in both groups expressed preferences for comfort-focused care, and preference-care concordance exceeded 90% in both groups.

Safety and tolerability data were not reported. Key limitations include the observational design, which shows associations rather than causation, and reliance on proxy-reported survey data. The nationally representative estimates provide descriptive patterns but cannot establish why these differences exist.

For practice, this study describes patterns in end-of-life care for older adults with dementia, including higher advance directive completion and surrogate involvement. Clinicians should recognize these as observed associations in population data, not as outcomes guaranteed by specific interventions. The high concordance between expressed preferences and care received in both groups is notable.

Researchers looked at end-of-life decision-making for older adults in the United States. They used survey data from over 5,000 people aged 50 and older who had passed away. The study compared those who had dementia before death to those who did not, focusing on how care decisions were made.

The study found that people with dementia were more likely to have a completed advance directive (81.3% vs. 69.1%). Their children or grandchildren were also more frequently involved in making care decisions for them (63.9% vs. 45.6%). The study noted that people with dementia had higher 'decision-making needs' in their final days, meaning more decisions had to be made about their care.

It is important to know this was an observational study. This means it can show patterns or links, but it cannot prove that having dementia directly causes more advance planning or family involvement. The data shows these things happened together. Most people in both groups preferred comfort-focused care at the end of life, and over 90% in both groups received care that matched their known preferences.

Readers should take from this that dementia is often associated with more family involvement in care decisions and higher rates of advance planning. This highlights the importance of discussing care wishes early, especially for conditions like dementia that can affect a person's ability to make decisions later. The results describe what happened in a large national sample, but individual experiences will vary.

What this means for you:
Dementia was linked to more advance directives and family decision-making, but this study shows association, not cause.

Study Details

EvidenceLevel 5
PublishedMar 2026
View Original Abstract ↓
IntroductionEnd-of-life decision-making poses unique challenges for individuals with dementia and their family caregivers as cognitive decline shifts decision-making responsibility to surrogates. MethodsUsing 2010-2022 Health and Retirement Study (HRS) exit interview data, we compared advance directive completion, decision-making needs near death, involvement of others in decision-making, and concordance between expressed preferences and care received among decedents with and without dementia. Analyses incorporated HRS exit interview sampling weights, primary sampling units, and strata to account for the complex multistage probability design of HRS and produce nationally representative estimates of U.S. older adult decedents ([&ge;]50 years). Weighted descriptive statistics and design-adjusted Wald tests were used to compare groups. ResultsAmong 5,389 decedents, 1,010 (weighted 17.7%) had dementia prior to death. Decedents with dementia were more likely to have completed advance directives than those without dementia (81.3% vs. 69.1%, p<.001). However, they also had significantly higher decision-making needs in the final days of life (54.3% vs. 47.2%, p<.001). Children or grandchildren were more frequently involved in care decisions for decedents with dementia (63.9% vs. 45.6%, p<.001). Despite differences in decision-making processes, most decedents in both groups expressed preferences for comfort-focused care, and preference-care concordance exceeded 90% in both groups. ConclusionsFindings suggested that dementia reshaped the structure and intensity of the shared decision-making process by increasing surrogate engagement and decisional demands, underscoring the importance of early advance care planning and structured support for family caregivers to sustain goal-concordant care.
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