Caregiving While Black: LIVE

Emory University

Status

Completed

Conditions

Dementia

Treatments

Behavioral: Caregiving While Black-LIVE

Study type

Interventional

Funder types

Other

NIH

Identifiers

NCT06605391

R21AG083366 (U.S. NIH Grant/Contract)

STUDY00005946

Details and patient eligibility

About

This study will test the psychoeducation course, Caregiving while Black - Learning In Vital Engagement (LIVE), among Black caregivers providing care to persons with dementia. This course aims to enhance Black caregivers' capacity to cope effectively with their caregiving role of navigating care and the world of healthcare in ways that take into consideration the social and cultural context of their unique life experiences.

Full description

Black caregivers and their care recipients experience disparities in care, have lower rates of formal service use, and are generally under-treated. More specifically, disparities in healthcare quality include higher rates of missed or delayed dementia diagnoses among Black older adults and a lower likelihood of receiving dementia medication or care from a dementia specialist. Notably, disparities exist for caregivers of persons living with Alzheimer's disease and persons living with dementia (PLWD) as well: Black caregivers report more time spent in caregiving than do White caregivers and use less respite service. Black caregivers also report increased difficulties navigating the healthcare system. Further, racial differences and disparities related to caregiving experiences exist at alarming rates for use of supportive services (33% vs 25%), care hours (54% vs 39%), and living below the federal poverty level (32% vs 12%) among Black caregivers compared to White caregivers. Black families faced with dementia (Medicare beneficiaries) incur 1.7 times more in healthcare cost and higher proportions of preventable hospitalizations than White families. Among PLWD, Black older adults account for nearly a third of preventable hospitalizations. It should be noted that these disparities are not due to biological or genetic differences between racial or ethnic groups, as race and ethnicity are social constructs. Rather, it is more likely due to lived experience and structural racism leading to disparities in social and structural determinants of health. These amplified experiences highlight the importance of this proposal to further develop a course that addresses the cultural and practical reality of supporting a PLWD as a Black in America, as Black caregivers desire better access to culturally relevant caregiving and self-care information. One potential tool to mitigate the aforementioned health disparities is to offer an education tailored and responsive to the needs of Black caregivers. This project responds to a compound gap in psychoeducation aimed at promoting caregiving mastery.

This study will test the psychoeducation course, Caregiving while Black - LIVE, among Black caregivers providing care to persons with dementia. The researchers will employ a mixed-methods pre-post no control design to gather formative and evaluative data from four cohorts (10 participants in each cohort) of Black caregivers. The course is self-paced and participants are asked to complete the course over an 8-week period.

Enrollment

40 patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion and exclusion criteria

Caregiver Inclusion Criteria:

at least 18 years of age
family member (or friend) who self-identifies as Black American and as the principal caregiver of a community-dwelling PLWD (not in hospice care) and who is the principal companion of that person during healthcare encounters
provides some hands-on care multiple times a week
has access to an electronic device and/or access to broadband internet
able to speak and understand English

Caregiver Exclusion Criteria:

persons who cannot provide consent
- persons who are not yet adults (under 18 years of age)
- prisoners
- cognitively impaired adults
have plans to relinquish caring responsibilities for PLWD or are considering moving the PLWD to an institutional setting within the next 6 months
not able to clearly understand English