# Administrative Supplement to Understanding and Respecting End-of-Life Treatment Preferences Among Older Adults with Alzheimer's Disease and Related Dementias

> **NIH NIH R01** · JOHNS HOPKINS UNIVERSITY · 2020 · $130,093

## Abstract

Understanding and Respecting End-of-Life Treatment Preferences Among Older Adults with
Alzheimer's Disease and Related Dementias
Project Summary/Abstract
Cognitive impairment is extremely common near the end of life. Cognitive impairment often co-occurs with
physical health conditions and the clinical progression of dementia and other chronic conditions can lead to
frequent hospitalizations and situations requiring decisions about aggressive and potentially burdensome
treatments that are unlikely to improve the survival or quality of life for these patients. Because cognitive
impairment frequently precludes these patients from participating in decisions about their care, surrogate
decision-makers must often make decisions quickly and with limited information about their loved ones'
preferences. Although advance directives have been associated with less aggressive care for cognitively
impaired patients, only a minority of cognitively impaired older adults prepare these documents. Expanded use
of advance care planning (ACP) is viewed as a potential way of improving the quality of end-of-life care, but a
number of questions remain. It is unclear whether cognitive functioning influences treatment preferences, how
surrogate decision makers view treatment options, how they use preference information, and whether framing
of treatment choices influences surrogate decision-making.
In this project, an interdisciplinary team including researchers with expertise in economics, health policy,
bioethics, critical care, mental health and nursing addresses three aims. The first two analyze new and
existing survey data collected among Health and Retirement Study respondents and decedents to 1- Test
whether decision-maker characteristics and the presence of written or oral directions influence the decisions
currently being made for persons with Alzheimer's disease and Alzheimer's disease Related Dementias
(AD/ADRD); 2- Describe the relationships between cognitive impairment, end-of-life treatment preferences,
and advance care planning (ACP). Informed by Aims 1 and 2, aim 3- Conducts online experiments to test how
the choices that American adults think surrogate decision-makers should make for persons with AD/ADRD
vary with characteristics of patients' preferences and advanced care planning.
Findings from this study will address evidence gaps around advance care planning for AD/ADRD highlighted in
the NIA/NINR Funding Opportunity “Improving Quality of Care and Quality of Life for Persons with Alzheimer's
Disease and Related Dementias at the End of Life,” and priorities articulated in the National Plan to Address
Alzheimer's Disease. Results from this study can help to design interventions to increase the likelihood that a
patient engaging in advance care planning has the conversations or prepares the documents that allow family,
friends, and clinicians to act in a patient's best interest after dementia onset. Findings can also inform
decision-making when ACP may no ...

## Key facts

- **NIH application ID:** 10130156
- **Project number:** 3R01AG059205-03S1
- **Recipient organization:** JOHNS HOPKINS UNIVERSITY
- **Principal Investigator:** Lauren Hersch Nicholas
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $130,093
- **Award type:** 3
- **Project period:** 2018-05-15 → 2020-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10130156

## Citation

> US National Institutes of Health, RePORTER application 10130156, Administrative Supplement to Understanding and Respecting End-of-Life Treatment Preferences Among Older Adults with Alzheimer's Disease and Related Dementias (3R01AG059205-03S1). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10130156. Licensed CC0.

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