# Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure

> **NIH NIH R03** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2020 · $156,000

## Abstract

Project Summary: Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's
Dementia Risk Disclosure
With improvement in neuroimaging and biomarker measurement, earlier detection of Alzheimer's disease (AD)
has been made possible. Similarly, these methods have informed risk for Dementia – Alzheimer's Type (DAT),
the advanced phenotypic presentation of AD. Accordingly, patient interest in understanding their personal risk
for DAT has grown exponentially, with up to 90% of the population requesting DAT feedback. While studies
have produced general suggestions for providing feedback about individual risk factors, no study has
systematically compared patient and family member preferences for the amount and type of risk disclosure
information received (standard clinical information, genotype, neuroimaging, biomarkers). Without
understanding the expectations of diverse patient populations for DAT risk disclosure, we cannot effectively
communicate the information gained through recent scientific advances, creating a translational problem.
Furthermore, a critical oversight of existing DAT risk disclosure literature is an inattention to the patient-specific
factors that dictate preferences for and ability to adapt to DAT risk feedback. In particular, psychological and
sociocultural differences experienced by African-American patients and families are critical factors dictating
feedback preferences and utility, but have not previously been evaluated in risk disclosure literature.
The lack of culturally-informed feedback protocols represents an ethical and practical challenge facing all AD
researchers, and an opportunity to directly address a potential source of healthcare disparities in a vulnerable
population.
The proposed project will respond to these identified empirical gaps by developing semi-structured feedback
protocols for DAT risk disclosure that are informed by patient-specific characteristics, preferences and
rationale. In Year 1, we will utilize the Michigan Alzheimer's Disease Core Center's longitudinal cohort to
conduct a systematic assessment of the needs and desires of a racially diverse sample of cognitively intact or
MCI-diagnosed patients and their caregivers (Specific Aim 1). Specifically, we will investigate the desired level
of risk information (none, based on readily clinically available information, genetic information, quantitative
neuroimaging, and/or amyloid and tau biomarker burden), as well as personal motivations for requesting this
information, in a sample of African-American and White older adults. The needs assessment will also analyze
patient-specific factors that influence risk disclosure preferences in these samples, through the lens of the
Health Belief Model. In Year 2 we will develop and pilot patient-centered feedback protocols informed by the
results of Year 1, with immediate and follow-up measurement of patient and informant satisfaction,
comprehension, and psychological reactions (Specific A...

## Key facts

- **NIH application ID:** 9902303
- **Project number:** 5R03AG063222-02
- **Recipient organization:** UNIVERSITY OF MICHIGAN AT ANN ARBOR
- **Principal Investigator:** Annalise Rahman-Filipiak
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $156,000
- **Award type:** 5
- **Project period:** 2019-04-01 → 2022-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9902303

## Citation

> US National Institutes of Health, RePORTER application 9902303, Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure (5R03AG063222-02). Retrieved via AI Analytics 2026-05-21 from https://api.ai-analytics.org/grant/nih/9902303. Licensed CC0.

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