New program aims to ease dementia care decisions for african american families
NCT ID NCT05139290
First seen Jul 17, 2026 · Last updated Jul 17, 2026
Summary
This study develops and tests a decision-making program designed specifically for African American adult daughters who make healthcare choices for their parents with dementia. The program focuses on communication, problem-solving, and understanding the healthcare system, all while respecting cultural identity. Researchers will first gather information through surveys and interviews, then test a prototype with 20 parent-daughter pairs to see if it improves quality of life and decision-making confidence.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- Active substance
- a culturally tailored family-based behavioral program focused on communication, problem-solving, health system literacy, and family systems
- What this could lead to
- If successful, this could lead to a culturally sensitive support program that helps African American families make better healthcare decisions for loved ones with dementia.
- What could go wrong
- This is a small, early-phase study with only 40 participants, so results may not apply to all families. The intervention is still being designed and tested for feasibility.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Phase
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Not a phased trial
Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.
- Participants
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About 40 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Jul 2022
- Expected to finish
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Aug 2027
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
For persons living with memory loss or cognitive impairment/Alzheimer's disease and related dementias(PLWD): Inclusion 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. Exclusion Criteria: * any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia). Caregiver: Inclusion Criteria: * 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: Inclusion Criteria: * 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: Inclusion Criteria: * 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 Inclusion Criteria: \- 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.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
4 sites. The list below names each one and where it is.
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The official record
The full official record for this study. This one lists no contact details, but it is the first place any would appear.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Emory Healthcare Integrated Memory Care Clinic
Atlanta, Georgia, 30329, United States
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Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core
Atlanta, Georgia, 30329, United States
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Metro-Atlanta
Atlanta, Georgia, 30340, United States
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Zeta Phi Beta Sorority, Inc.
Washington D.C., District of Columbia, 20009, United States
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