Decision-Making Capacity Assessment and Inclusive Decision-Making for Older Persons with Capacity Challenges

An estimated 6.9 million Americans are currently living with Alzheimer’s dementia, a number expected to reach 12.7 million by 2050. People with dementia, along with others who have decisional limitations, face threats to their legal and autonomy rights to manage health care, residential, and other personal decisions following assessments of decision-making capacity. Capacity refers to a person’s ability to make informed decisions about whether to accept or reject care and is presumed under the law unless a clinician determines otherwise. After a finding of impaired capacity, legal, ethical, and clinical guidance typically directs clinicians to obtain informed consent from a surrogate decision-maker. However, concerns have been raised regarding the effectiveness of surrogate decision-making and its potential for abuse. Additional concerns have been raised about how capacity has been defined and assessed since the 1990s, including the difficulty of making dichotomous judgments about capacity, poor interrater reliability even among experts, and the risk of bias in assessments. At the same time, the legal and policy landscape related to autonomy rights is shifting toward inclusion and supported decision-making rather than exclusion and reliance on surrogate decision-makers. With some exceptions, however, research has focused primarily on the performance of assessment tools and the characterization of capacity deficits in patient populations, rather than on whether approaches to assessing capacity align with evolving legal and policy frameworks for decision-making with people who have decisional impairments. There is limited research on how capacity is assessed in clinical practice overall, and there is little evidence that clinical care has shifted in response to changes in the legal and policy landscape. The specific aims of this project are: (Aim 1) to use qualitative methods to explore experienced clinicians’ current capacity assessment and decision-making practices, experiences, attitudes, and willingness to change across multiple specialties, settings, and geographic regions; and (Aim 2) to develop and pilot test a survey measuring key aspects of capacity assessment and decision-making, enabling a subsequent large-scale quantitative study of clinicians’ practices across diverse specialties and settings. Results from this study have the potential to (1) provide in-depth insight into current capacity assessment and decision-making practices in clinical care that is not currently available; (2) generate empirical evidence regarding how clinicians assess capacity and make decisions for individuals with decisional impairments; and (3) lay the groundwork for future intervention studies aimed at aligning clinical practices with the legal and ethical autonomy rights of people with decisional limitations. Consistent with the goals of R21 grants, this study explores an understudied area, represents an initial step toward a larger research program, and will inform future intervention studies to benefit a population whose fundamental rights currently receive limited protection. Project Number: 1R21AG098947-01 | Fiscal Year: 2026 | NIH Institute/Center: National Institute on Aging (NIA) | Principal Investigator: Maureen Henry (+1 co-PI) | Institution: UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH, SALT LAKE CITY, UT | Award Amount: $423,500 | Activity Code: R21 | Study Section: Special Emphasis Panel[ZRG1 CCHI-L (57)] View on NIH RePORTER: https://reporter.nih.gov/project-details/11301632