Decision-making support for daughters caring for parents with memory loss
Decision-Making Experiences for Culturally Inclusive Dementia Engagement: Dyads and Families (DECIDE: Dyads and Families)
NA · Emory University · NCT05139290
This study is testing a new program to help African American daughters who care for parents with memory loss make better decisions and improve their quality of life.
Quick facts
| Phase | NA |
|---|---|
| Study type | Interventional |
| Enrollment | 40 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Emory University (other) |
| Locations | 4 sites (Washington D.C., District of Columbia and 3 other locations) |
| Trial ID | NCT05139290 on ClinicalTrials.gov |
What this trial studies
This study aims to design and test a decision-making program specifically for African American adult daughters who are caregivers for parents living with memory loss, including Alzheimer's disease. The research involves collecting data through surveys and interviews to understand the caregiving experiences, cultural identity, and healthcare decision-making processes. The goal is to develop an intervention that enhances the quality of life for both the caregivers and their parents. Recruitment will occur in metro Atlanta and across the United States, utilizing flyers and videos to engage potential participants.
Who should consider this trial
Good fit: Ideal candidates include African American adult daughters aged 18 and older who assist in caregiving for parents aged 50 and older with mild to moderate dementia.
Not a fit: Patients with significant neurological diseases or major psychiatric disorders may not benefit from this study.
Why it matters
Potential benefit: If successful, this program could significantly improve the quality of life for African American families dealing with memory loss.
How similar studies have performed: Other studies have shown success in developing culturally tailored interventions for caregivers, indicating potential for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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.
Where this trial is running
Washington D.C., District of Columbia and 3 other locations
- Zeta Phi Beta Sorority, Inc. — Washington D.C., District of Columbia, United States (RECRUITING)
- Emory Healthcare Integrated Memory Care Clinic — Atlanta, Georgia, United States (RECRUITING)
- Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core — Atlanta, Georgia, United States (RECRUITING)
- Metro-Atlanta — Atlanta, Georgia, United States (RECRUITING)
Study contacts
- Principal investigator: Kalisha Bonds Johnson, PhD RN PMHNP — Emory University
- Study coordinator: Kalisha Bonds Johnson, PhD RN PMHNP
- Email: kbonds@emory.edu
- Phone: 404-727-5937
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Dementia, Alzheimer Disease, Caregiver Burden