DECIDE: Dyads and Families

Description

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

Dementia, Alzheimer Disease, Caregiver Burden

Study Overview

Study Details

Study overview

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.

Decision-Making Experiences for Culturally Inclusive Dementia Engagement: Dyads and Families (DECIDE: Dyads and Families)

DECIDE: Dyads and Families

Condition
Dementia
Intervention / Treatment

-

Contacts and Locations

Washington

Zeta Phi Beta Sorority, Inc., Washington, District of Columbia, United States, 20009

Atlanta

Emory Healthcare Integrated Memory Care Clinic, Atlanta, Georgia, United States, 30329

Atlanta

Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core, Atlanta, Georgia, United States, 30329

Atlanta

Metro-Atlanta, Atlanta, Georgia, United States, 30340

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * self-identifies as African American
  • * age 50 years or older
  • * community-dwelling
  • * experiencing signs and symptoms of mild to moderate dementia through family caregiver report on the Dementia Severity Rating Scale and meeting the National Institute on Aging and the Alzheimer's Association clinical criteria for probable (Alzheimer's Disease (AD)
  • * able to read, speak, and understand English
  • * willing to participate.
  • * any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia).

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Emory University,

Kalisha Bonds Johnson, PhD RN PMHNP, PRINCIPAL_INVESTIGATOR, Emory University

Study Record Dates

2026-12