Dementia and End-of-Life Shared Decision-Making Among Older US Adults

End-of-life decision-making poses unique challenges for individuals with dementia and their family caregivers as cognitive decline shifts decision-making responsibility to surrogates.

Using 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 (≥50 years). Weighted descriptive statistics and design-adjusted Wald tests were used to compare groups.

Among 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.

Findings 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.