NCT05139290Withdrawn
DECIDE: Dyads and Families
Decision-Making Experiences for Culturally Inclusive Dementia Engagement: Dyads and Families (DECIDE: Dyads and Families)
Source: ClinicalTrials.gov · Last updated 18 Sept 2026
Reason given: No participants were enrolled in the clinical trial portion. The community-engaged nature of the project required more time than anticipated, and funding was insufficient to support the implementation of the proposed intervention.
Brief summary (registry, in English)
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.
- Status (registry)
- Withdrawn
- Study type
- Interventional
- Enrollment
- 0 (actual)
- First submitted
- 4 Nov 2021
- Start date
- 15 Jul 2022
- Primary completion date
- 31 Aug 2027
- Lead sponsor
- Emory University
- Diseases
- Alzheimer disease
- NCT number
- NCT05139290
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia).
- Caregiver:
Who the study is looking for
- 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.
- self-identifies as African American
- 18 years of age or older
- daughter/daughter-in-law (including non-blood individuals)
- aids in activities of daily living and/or instrumental activities of daily living for the PLWD
- makes/takes part in formal care decisions
- able to read, speak, and understand English
- cognitively intact
- access to an internet connection
- access to a phone or computer that accepts emails.
- Key informants:
- Meet the criteria for PLWD and caregiver
- has experience navigating at least 2 of the following for their parent living with dementia: assisting the PLWD with getting a formal diagnosis of Alzheimer's disease and related dementias, finding/changing a healthcare provider, medication management, receiving treatment or having a procedure, conversations about hospice, palliative care, and/or end-of-life care.
- Past caregiver:
- Meet criteria for caregiver except not actively providing care because of the death of their parent or the parent has been transitioned to a long-term care facility.
- The death of the parent should be at least 12 months prior to recruitment.
- Caregiver of persons with severe dementia
- Meet criteria for caregiver except actively providing care for a parent with severe dementia based on the family caregiver report on the Dementia Severity Rating Scale.
Criteria the registry did not label
- For persons living with memory loss or cognitive impairment/Alzheimer's disease and related dementias(PLWD):
Age in the registry: 18 years to - · Sex: All · Accepts healthy volunteers
Sites (4)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Emory Healthcare Integrated Memory Care Clinic | Atlanta | United States | Unknown status |
| Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core | Atlanta | United States | Unknown status |
| Metro-Atlanta | Atlanta | United States | Unknown status |
| Zeta Phi Beta Sorority, Inc. | Washington D.C. | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.