Caregiving While Black: LIVE

Caregiving While Black-LIVE: Empowering Black Dementia Caregivers to Navigate Care

Status

Completed

Phases

Study type

Interventional

Source

ClinicalTrials.gov

Registry ID

NCT06605391

Enrollment

Registered

2024-09-20

Start date

2024-10-01

Completion date

2025-08-12

Last updated

2025-09-23

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Dementia

Keywords

Caregiving

Brief summary

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.

Detailed 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.

Interventions

BEHAVIORALCaregiving While Black-LIVE

Caregiving while Black-LIVE is a psychoeducation program that aims to intensify the development of caregiver mastery by integrating the online learning assets of the fully asynchronous Caregiving while Black program with synchronous, group-based opportunities for interactivity and active learning. The Caregiving while Black course includes topics of navigating the healthcare system, managing home life, and caregiver self-care. Once enrolled in the course, participants will be provided instructions for accessing the weekly sessions and course online, and supplemental course materials will be mailed to them. The Canvas platform enables the research team to monitor each individual's movement in the cohort through the asynchronous part of the course. Nudges and reminders to view these materials are sent twice a week via text or email with participant's consent. Synchronous sessions are conducted on a videoconferencing platform.

Study design

Allocation

Intervention model

SINGLE_GROUP

Primary purpose

SUPPORTIVE_CARE

Masking

NONE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

Inclusion 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

Design outcomes

Primary

Measure	Time frame	Description
Pearlin Competence and Management of Situation Score	Baseline, Month 3, Month 6	Self-rated caregiving competency is assessed with 4 items asking about feelings the caregiver has as a result of providing care. Responses are given on a 4-point scale where not at all is scored as 1 and completely or very is scored as 4. The total score ranges from 4 to 16 with higher scores indicating greater feelings of competency.
Perceived Stress Scale Score	Baseline, Month 3, Month 6	Caregiver stress was assessed with the 14-item Perceived Stress Scale. Responses are given on a scale of 0 to 4 where 0 = never and 4 = very often. Total scores range from 0 to 56 with higher scores indicating greater perceived stress by caregivers.
State-Trait Anxiety Inventory (STAI) Score	Baseline, Month 3, Month 6	The STAI is a 20-item self-report scale of positive and negative anxiety experiences. Responses are given on a 4-point scale where 1 = not at all and 4 = very much so. Total scores range from 20 to 80 and higher scores indicate greater anxiety.
Caregiver Assessment of Behavioral Skill Score	Baseline, Month 3, Month 6	The Caregiver Assessment of Behavioral Skill instrument includes 17 items asking how frequently caregivers respond to certain situations. Responses are given on a 3-point scale where seldom true is scored as 0 and true most of the time is scored as 2 (a response is also available when the situation is not relevant). The total score is is the sum of item ratings and ranges from 0 to 34, where higher scores indicate greater behavioral skills as related to caregiving.
Health Literacy Questionnaire (HLQ) Score for Feeling Understood by Healthcare Providers Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Feeling understood and supported by healthcare providers has 4 items where responses are given on a 4-point scale from strongly disagree (scored as 1) to strongly agree (scored as 4). The total score for this subscale is the average of responses and ranges from 1 to 4. Higher scores indicate that the subscale is an area of health literacy strength.
Health Literacy Questionnaire (HLQ) Score for Appraisal of Health Information Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Appraisal of health information has 5 items where responses are given on a 4-point scale from strongly disagree (scored as 1) to strongly agree (scored as 4). The total score for this subscale is the average of responses and ranges from 1 to 4. Higher scores indicate that the subscale is an area of health literacy strength.
Health Literacy Questionnaire (HLQ) Score for Ability to Engage With Healthcare Providers Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Ability to actively engage with healthcare providers has 5 items where responses are given on a 5-point scale from cannot do (scored as 1) to very easy (scored as 5). The total score for this subscale is the average of responses and ranges from 1 to 5. Higher scores indicate that the subscale is an area of health literacy strength.
Health Literacy Questionnaire (HLQ) Score for Navigating the Healthcare System Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Navigating the healthcare system has 6 items where responses are given on a 5-point scale from cannot do (scored as 1) to very easy (scored as 5). The total score for this subscale is the average of responses and ranges from 1 to 5. Higher scores indicate that the subscale is an area of health literacy strength.
Health Literacy Questionnaire (HLQ) Score for Ability to Find Information Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Ability to find good health information has 5 items where responses are given on a 5-point scale from cannot do (scored as 1) to very easy (scored as 5). The total score for this subscale is the average of responses and ranges from 1 to 5. Higher scores indicate that the subscale is an area of health literacy strength.
Health Literacy Questionnaire (HLQ) Score for Understand Health Information Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Understand health information well enough to know what to do has 5 items where responses are given on a 5-point scale from cannot do (scored as 1) to very easy (scored as 5). The total score for this subscale is the average of responses and ranges from 1 to 5. Higher scores indicate that the subscale is an area of health literacy strength.
Zarit Burden Inventory (ZBI) Score	Baseline, Month 3, Month 6	The Zarit Burden Interview is a 22-item scale of objective and subjective caregiver burden. Responses are given on a 5-point scale where 0 = never and 4 = nearly always. Total scores range from 0 to 88 where higher scores indicate greater feelings of being burdened with providing care.
Center for Epidemiological Studies - Depression Score	Baseline, Month 3, Month 6	Caregiver depression will be assessed with the 20-item Center for Epidemiologic Studies - Depression Scale. Caregivers are asked how frequently they have experienced specific symptoms of depression in the past week. Responses are given as 0 = rarely, 1 = 1-2 days, 2 = 3-4 days, and 4 = 5-7 days. Total scores range from 0 to 60 with higher scores indicating greater symptoms of depression.

Other

Measure	Time frame	Description
Change in Health Literacy Questionnaire (HLQ) Score for Actively Managing Health Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Actively managing my health has 5 items where responses are given on a 4-point scale from strongly disagree (scored as 1) to strongly agree (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Having Sufficient Information Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Having sufficient information to manage my health has 4 items where responses are given on a 4-point scale from strongly disagree (scored as 1) to strongly agree (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Social Support Subscale	Baseline, Month 3, Month 6	The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of Social support for health has 5 items where responses are given on a 4-point scale from strongly disagree (scored as 1) to strongly agree (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.

Countries

United States

Participant flow

Recruitment details

Participants were enrolled through Emory University in Atlanta, Georgia, USA. Participant enrollment began October 1, 2024 and all follow-up assessments were completed by August 12, 2025.

Participants by arm

Arm	Count
Caregiving While Black-LIVE Black dementia caregivers participating in the psychoeducation course, Caregiving while Black-LIVE, over an 8 week time period.	40
Total	40

Baseline characteristics

Characteristic	Caregiving While Black-LIVE
Age, Continuous	56.60 years STANDARD_DEVIATION 9.75
Annual income $0 - $30,000	7 Participants
Annual income $31,000 - $60,000	10 Participants
Annual income $61,000 - $90,000	6 Participants
Annual income $91,000 - $120,000	9 Participants
Annual income Do not wish to answer	4 Participants
Annual income More than $120,000	4 Participants
Area of residence Rural	4 Participants
Area of residence Suburban	22 Participants
Area of residence Urban	14 Participants
Education College graduate	22 Participants
Education Graduate degree	9 Participants
Education High school/General Educational Development (GED)	1 Participants
Education Some college	8 Participants
Employed outside of the home No	15 Participants
Employed outside of the home Yes	25 Participants
Ethnicity (NIH/OMB) Hispanic or Latino	2 Participants
Ethnicity (NIH/OMB) Not Hispanic or Latino	37 Participants
Ethnicity (NIH/OMB) Unknown or Not Reported	1 Participants
Living with person living with dementia No	21 Participants
Living with person living with dementia Yes	19 Participants
Marriage status Divorced or separated	4 Participants
Marriage status Married	20 Participants
Marriage status Single	13 Participants
Marriage status Widowed	3 Participants
Race (NIH/OMB) American Indian or Alaska Native	0 Participants
Race (NIH/OMB) Asian	0 Participants
Race (NIH/OMB) Black or African American	40 Participants
Race (NIH/OMB) More than one race	0 Participants
Race (NIH/OMB) Native Hawaiian or Other Pacific Islander	0 Participants
Race (NIH/OMB) Unknown or Not Reported	0 Participants
Race (NIH/OMB) White	0 Participants
Region of Enrollment United States	40 Participants
Relation to person living with dementia who is being cared for Other relative	6 Participants
Relation to person living with dementia who is being cared for Parent	29 Participants
Relation to person living with dementia who is being cared for Spouse	5 Participants
Sex/Gender, Customized Female	34 Participants
Sex/Gender, Customized Male	5 Participants
Sex/Gender, Customized Non-binary	1 Participants

Adverse events

Event type	EG000 affected / at risk
deaths Total, all-cause mortality	0 / 40
other Total, other adverse events	0 / 40
serious Total, serious adverse events	0 / 40

Outcome results

Primary

Caregiver Assessment of Behavioral Skill Score

The Caregiver Assessment of Behavioral Skill instrument includes 17 items asking how frequently caregivers respond to certain situations. Responses are given on a 3-point scale where seldom true is scored as 0 and true most of the time is scored as 2 (a response is also available when the situation is not relevant). The total score is is the sum of item ratings and ranges from 0 to 34, where higher scores indicate greater behavioral skills as related to caregiving.