Culturally adapted SHARE program for African-American families coping with early to moderate dementia

Adapting the SHARE for Dementia Early-Stage Dyadic Intervention: A Stage I Pilot Study With African-American Families

This project will test a culturally adapted SHARE counseling program for African-American adults with mild-to-moderate dementia and their family caregivers to see if it improves care planning and support.

Quick facts

• Phase: Not applicable
• Study type: Interventional
• Enrollment: 120 (estimated)
• Ages: 18 Years and up
• Sex: All
• Sponsor: Benjamin Rose Institute on Aging (Academic / other)
• Locations: 1 site (Cleveland, Ohio)
• Trial ID: NCT07208162 on ClinicalTrials.gov

What this trial studies

Researchers will work with an advisory committee of African American people with lived experience and experts to tailor SHARE counseling materials and create counselor and family guides. They will run focus groups with African American caregiver–care-recipient dyads and community service providers to refine the materials and procedures. After training 20 SHARE counselors on the adapted version, the team will conduct a randomized controlled trial enrolling 120 African American dyads to compare the adapted SHARE program with usual care. Outcomes will include feasibility, acceptability, and preliminary effects on care planning and caregiver well-being.

Who should consider this trial

Good fit: Ideal candidates are African American caregiver–care-recipient dyads where the person with dementia is at least 50, lives at home, has mild-to-moderate dementia, and both parties speak and read English with a caregiver aged 18 or older.

Not a fit: People with severe dementia, major psychiatric disorders (e.g., schizophrenia, bipolar disorder, major depression), traumatic brain injury, intellectual/developmental disabilities, extreme difficulty adjusting to diagnosis, or those who cannot participate in English or are not African American are unlikely to benefit from this adapted program.

Why it matters

Potential benefit: If successful, the adapted program could improve care planning, caregiver support, and quality of life for African-American dyads affected by early-to-moderate dementia.

How similar studies have performed: Prior caregiver counseling and dyadic care-planning programs, including earlier SHARE implementations, have shown benefits for caregivers and planning, but a culturally tailored SHARE specifically for African-American dyads is a novel adaptation.

Eligibility criteria

Inclusion Criteria:

* African American dyads (both the caregivers and the care-recipient, an individual with an early-stage memory impairing condition (e.g., Alzheimer's disease, vascular dementia, cognitive impairment, etc.)
* Care-recipient lives at home.
* The caregiver (CG) and/or the person with dementia (PWD), or symptoms of memory loss must identify as African American.
* PWD must be at least 50 years old and CGs 18 or older,
* Ability to speak and read English,
* 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 AD.

Exclusion Criteria:

* A mental health condition (e.g., schizophrenia, bipolar disorder, major depression)
* A traumatic brain injury
* Intellectual or developmental disability
* Individuals experiencing extreme difficulty adjusting and coping to the diagnosis • Individuals living in an institutional setting

Where this trial is running

Cleveland, Ohio

• Benjamin Rose — Cleveland, Ohio, United States (Recruiting)

Study contacts

• Principal investigator: Silvia Orsulic-Jeras — Benjamin Rose Institute on Aging
• Study coordinator: Silvia Orsulic-Jeras

Conditions Mild Dementia; Moderate Dementia