New program aims to ease dementia care decisions for african american families

NCT ID NCT05139290

What the study statuses mean

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Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only This study
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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

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

About 40 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jul 2022

Expected to finish

Aug 2027

An estimate. End dates often move.

Lead sponsor

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

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show 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.

  1. The places running it

    4 sites. The list below names each one and where it is.

  2. 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.

    Open the record ↗

  3. 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

  • Emory Healthcare Integrated Memory Care Clinic

    Atlanta, Georgia, 30329, United States

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

    Atlanta, Georgia, 30329, United States

  • Metro-Atlanta

    Atlanta, Georgia, 30340, United States

  • Zeta Phi Beta Sorority, Inc.

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

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