# Designing a Culturally Tailored Formal Care Decision-Making Intervention for African American Dementia Dyads and Families

> **NIH NIH K23** · EMORY UNIVERSITY · 2023 · $144,748

## Abstract

PROJECT SUMMARY/ABSTRACT
African American (AA) older adults have a greater risk of developing Alzheimer's disease and related
dementias (ADRD) when compared to non-Latinx White older adults, which increases the number of
caregivers for this racial group. AA caregivers are predominantly daughters of AA persons living with ADRD
(AA PLWDs). These adult daughters and their families must navigate formal care decisions for their AA
PLWDs, which have associated health disparities. These health disparities result in AA PLWDs experiencing
greater morbidity and worse quality of life. There are no structured programs specifically aimed at guiding AA
parent-adult daughter dementia dyads' and families' formal care decision-making processes for AA PLWDs,
and AA caregivers tend to exhaust informal caregiving sources before using formal care. My preliminary
research focused on AA dementia dyads (i.e., AA PLWDs and their AA caregivers) found that AA non-spouse
(primarily adult daughters) dementia dyads both experienced worse quality of life than both members of AA
spouse caregiver dementia dyads, supporting our focus on AA adult daughter caregivers. In addition, AA
caregivers identified a lack of cultural tailoring of formal care as a barrier for use by AA PLWDs and desired
more family involvement when making formal care decisions for AA PLWDs. Aligned with the National Institute
of Aging's Behavioral and Social Science high-priority dementia caregiver research, the K23 award aims are
to: 1) examine the influences (i.e., behavioral, sociocultural, and environmental) on the formal care decision-
making process and the quality of life of AA PLWDs and their AA adult daughter caregivers, 2) describe the
decision-making processes of members of AA parent-adult daughter dementia dyads that affect current and
future formal care use for AA PLWDs and explore how these processes influence the quality of life of both
members of these dyads, and 3) design and test the feasibility of a prototype intervention for AA parent-adult
daughter dementia dyads and families to enable them to develop tailored strategies to support the formal care
decision-making process for AA PLWDs. Building on my training as a clinician with expertise in ADRD
caregiving, I will: 1) develop expertise in multidisciplinary decision-making models that can be adapted to
conduct culturally-relevant research within AA dementia dyads and families, 2) acquire skills in analyzing
quantitative, qualitative, and mixed-methods dyadic data for intervention development, and 3) obtain expertise
using intervention mapping and design thinking for the development, implementation, and evaluation of
intervention studies. I have assembled an excellent team of mentors (Drs. Hepburn, Powell, and Lyons) and
consultants (Drs. Whitlatch, Dunbar, Higgins, and Yeager). The K23 award will provide me with the necessary
foundation to become an independent nurse scientist dedicated to improving the quality of life of AA dementia
dyads...

## Key facts

- **NIH application ID:** 10694927
- **Project number:** 5K23AG073516-03
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** Kalisha Bonds Johnson
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2023
- **Award amount:** $144,748
- **Award type:** 5
- **Project period:** 2021-09-30 → 2026-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10694927

## Citation

> US National Institutes of Health, RePORTER application 10694927, Designing a Culturally Tailored Formal Care Decision-Making Intervention for African American Dementia Dyads and Families (5K23AG073516-03). Retrieved via AI Analytics 2026-05-21 from https://api.ai-analytics.org/grant/nih/10694927. Licensed CC0.

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