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

Area of Science:

• Gerontology
• Palliative Care
• Health Services Research

Background:

• End-of-life decision-making is complex for individuals with dementia.
• Cognitive decline necessitates surrogate decision-making.

Purpose of the Study:

• To compare end-of-life decision-making processes between decedents with and without dementia.
• To analyze advance directive completion, decisional needs, surrogate involvement, and preference-care concordance.

Main Methods:

• Utilized 2010-2022 Health and Retirement Study (HRS) exit interview data.
• Compared advance directive completion, decision-making needs, and care concordance among decedents with and without dementia.
• Employed weighted descriptive statistics and design-adjusted Wald tests for nationally representative estimates.

Main Results:

• Decedents with dementia (17.7%) were more likely to complete advance directives (81.3% vs. 69.1%).
• They experienced higher decision-making needs (54.3% vs. 47.2%) and greater family involvement (63.9% vs. 45.6%).
• Preference-care concordance exceeded 90% in both groups, with a focus on comfort care.

Conclusions:

• Dementia alters shared decision-making by increasing surrogate engagement and decisional demands.
• Early advance care planning is crucial.
• Structured support for family caregivers is essential for goal-concordant care.