Actively Recruiting

Phase Not Applicable
Age: 18Years +
All Genders
Healthy Volunteers
NCT05139290

DECIDE: Dyads and Families

Led by Emory University · Updated on 2025-07-03

40

Participants Needed

4

Research Sites

228 weeks

Total Duration

On this page

Sponsors

E

Emory University

Lead Sponsor

N

National Institute on Aging (NIA)

Collaborating Sponsor

AI-Summary

What this Trial Is About

The purpose of this study is to design and test a decision-making program that is tailored to support adult daughters making healthcare decisions for their parents who are living with memory loss to improve the quality of life of African American families. There are two phases of this research study. The first phase will collect information by surveys and/or interviews. The surveys and interviews will ask questions about demographics (e.g., age, race/ethnicity), culture, health, family dynamics, caregiving, and healthcare experiences. The surveys will be completed by all eligible adult daughters and parents with memory loss in pairs. The interviews will be completed by a smaller number of pairs and by all former adult daughter caregivers. The general scope of topics is caregiving experiences, cultural identity, healthcare decisions for persons living with Alzheimer's disease, and related dementias, health, and well-being. The research team will identify and examine key factors that will lead to designing and testing the feasibility of a culturally tailored prototype intervention for African American dementia dyads/families of persons living with mild to moderate Alzheimer's disease and related dementias.

CONDITIONS

Official Title

DECIDE: Dyads and Families

Who Can Participate

Age: 18Years +
All Genders
Healthy Volunteers

Eligibility Criteria

Eligible

You may qualify if you...

  • Self-identifies as African American
  • For persons living with memory loss: age 50 years or older
  • Community-dwelling persons with mild to moderate dementia as reported by caregiver
  • Able to read, speak, and understand English
  • Willing to participate
  • Adult daughter/daughter-in-law caregivers 18 years or older
  • Caregivers aid in daily living activities and participate in formal care decisions
  • Caregivers are cognitively intact
  • Caregivers have access to internet and a phone or computer that accepts emails
  • Key informants meet criteria for persons living with dementia and caregivers and have experience assisting with formal diagnosis, healthcare provider changes, medication management, treatment, hospice, palliative or end-of-life care
  • Past caregivers meet criteria but are not actively providing care due to parent's death or long-term care placement; parent death at least 12 months prior
  • Caregivers of persons with severe dementia actively providing care
Not Eligible

You will not qualify if you...

  • Persons living with memory loss with significant neurologic diseases (e.g., Parkinson's) or major psychiatric disorders (e.g., schizophrenia)

AI-Screening

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Trial Site Locations

Total: 4 locations

1

Zeta Phi Beta Sorority, Inc.

Washington D.C., District of Columbia, United States, 20009

Actively Recruiting

2

Emory Healthcare Integrated Memory Care Clinic

Atlanta, Georgia, United States, 30329

Actively Recruiting

3

Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core

Atlanta, Georgia, United States, 30329

Actively Recruiting

4

Metro-Atlanta

Atlanta, Georgia, United States, 30340

Actively Recruiting

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Research Team

K

Kalisha Bonds Johnson, PhD RN PMHNP

CONTACT

K

Kenneth Hepburn

CONTACT

How is the study designed?

Study Type

INTERVENTIONAL

Masking

NONE

Allocation

NA

Model

SINGLE_GROUP

Primary Purpose

SUPPORTIVE_CARE

Number of Arms

1

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