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DECIDE: Dyads and Families Study for African American Families Affected by Dementia

This study, called DECIDE: Dyads and Families, is creating and testing a program to help African American adult daughters make healthcare decisions for their parents living with memory loss (dementia or Alzheimer's disease). The program, called the Prototype Intervention, will focus on improving communication, problem-solving, understanding the healthcare system, and family dynamics within the context of African American culture. We want to see if this program can improve the quality of life for these families. We are looking for African American adults aged 50 or older who are living in the community and experiencing mild to moderate dementia, along with their adult daughters. The study aims to enroll 40 participants. We will measure success by how many participants stay in the study for eight weeks, how easy the intervention is to use, and how well we meet our recruitment goals within six months.

Study design
This is an interventional study that aims to enroll 40 participants. It involves surveys and interviews to gather information.
What's involved
You would complete surveys and/or interviews about demographics, culture, health, family dynamics, caregiving, and healthcare experiences. Interviews will occur remotely after screening.
Compensation
Not stated in the trial record.
Follow-up
Participant retention and usability of the intervention are measured at eight weeks. Recruitment goals are measured up to six months after recruitment starts.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05139290

DECIDE: Dyads and Families

Enrolling by Invitation
NAAges 18+InterventionalSupportive care
Emory University
~40 participants
Updated 2026-07-17 on ClinicalTrials.gov
What's tested:Prototype Intervention

At a glance

Recruiting sites
0 of 4 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Participant retention
Measured over eight weeks
+4 more outcomes measured

Conditions

Dementia
Alzheimer Disease
Caregiver Burden

Explore related trials

Alzheimer's DiseaseDementia

Where it's being run

4 sites across 2 states
Georgia3
District of Columbia1

Study leadership

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

Who to contact

This trial hasn't published a contact. View it on ClinicalTrials.gov

Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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.
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.
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.

Exclusion

any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia).

What this trial measures

  • Participant retentioneight weeks

    Acceptability of the intervention will be assessed with participant retention. Retention of 80% of participants from baseline to 3-month follow-up is considered successful. Attendance of dyads during program sessions during the intervention phase. The goal is to maintain ≥ 70% attendance at program sessions

  • Usability of InterventionUpon completion of the intervention (estimated to be 8 weeks)

    Usability of the intervention will be assessed with a qualitative interview with the African American parent-adult daughter dyads after completing the intervention. There is not a summary score for the open-ended questions asked during the interview.

  • Percentage of recruitment goal achievedUp to 6 months after the start of recruitment

    The feasibility of the intervention will be assessed as successful recruitment of study participants. This study aims to recruit 20 African American parent-adult daughter dementia dyads in ≤ 6 months. The actual recruited number of dyads will be reported as the percentage of dyads recruited within 6 months divided by 20 (actual/goal).

  • Change in Quality of Life-Alzheimer's Disease (QoL-AD) Scale Score0-month, 1 month, 3 months

    The preliminary efficacy of the intervention will be assessed with the Quality of Life-Alzheimer's Disease (QoL-AD) scale. The QoL-AD has 13 items which are scored as poor = 1, fair = 2, good = 3, excellent = 4. The total score ranges from 13 to 52 and higher scores indicate a greater quality of life.

  • Change in Decision Self-Efficacy Scale Score0-month, 1 month, 3 months

    The preliminary efficacy of the intervention will be assessed with the Decision Self-Efficacy Scale. The Decision Self-Efficacy Scale has 11 items which are scored as not at all confident = 0 to very confident = 5. The total score ranges from 0 to 100 and higher scores indicate greater self-efficacy.