Caregiving Course for Dementia

Overseen By Fayron Epps, PhD, RN

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Emory University

Disqualifiers: Under 18, Prisoners, Cognitively impaired, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Approved in 1 Jurisdiction This treatment is already approved in other countries

Compensation: Varies

Number of Visits: Unknown

Duration: 8 weeks

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial tests a course specifically designed for Black caregivers of people living with dementia. The goal is to help these caregivers manage their duties more effectively by considering their social and cultural backgrounds. Participants will take an 8-week course called Caregiving While Black-LIVE. The trial seeks Black Americans who are the primary caregivers for someone with dementia and assist with their care multiple times a week. Participants also need access to an internet-enabled device to join the course. As an unphased trial, this study offers a unique opportunity for caregivers to receive tailored support and enhance their caregiving experience.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that this course is safe for Black dementia caregivers?

Research shows that the Caregiving While Black-LIVE course supports Black caregivers of people with dementia, respecting cultural differences. As an educational program, it does not involve typical safety concerns like side effects or adverse reactions seen in drug trials.

The course provides useful strategies and coping methods. Since it involves learning and sharing experiences rather than medication, it is considered safe for participants. Studies on similar programs have not reported harmful effects. This type of program is generally well-received and focuses on enhancing mental and emotional well-being. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Caregiving While Black-LIVE course because it offers a tailored psychoeducation experience specifically for Black caregivers of individuals with dementia. Unlike standard support options that might not address cultural nuances, this course is designed to acknowledge and incorporate the unique cultural and social challenges faced by Black caregivers. This personalized approach aims to provide more relevant resources and coping strategies, which could lead to better caregiver well-being and improved care for dementia patients.

What evidence suggests that the Caregiving While Black-LIVE course is effective for dementia caregivers?

Research shows that the Caregiving While Black-LIVE course, included in this trial, benefits Black caregivers of people with dementia. This program supports caregivers by addressing their specific social and cultural experiences. Studies have found that the course enhances caregivers' skills in managing responsibilities and navigating the healthcare system. Participants reported feeling more confident and better prepared to handle caregiving stress. Early evidence suggests these benefits can last for at least three months after completing the course. ^{1 3 5 6 7}

Who Is on the Research Team?

Fayron Epps, PhD, RN

Principal Investigator

Emory University

Are You a Good Fit for This Trial?

This trial is for Black caregivers who are currently looking after someone with dementia. It's designed to help them manage their caregiving responsibilities while considering the social and cultural context of their experiences.

Inclusion Criteria

Has access to an electronic device and/or access to broadband internet

I am the main caregiver for someone with dementia, not in hospice, and I identify as Black American.

Able to speak and understand English

Exclusion Criteria

I cannot understand English well.

Prisoners

I plan to stop or transfer care for someone with dementia soon.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants complete the Caregiving while Black - LIVE psychoeducation course over an 8-week period

8 weeks

Follow-up

Participants are monitored for changes in health literacy, depression, stress, and caregiving burden

6 months

What Are the Treatments Tested in This Trial?

Interventions

• Caregiving While Black-LIVE

Trial Overview

The study is testing a psychoeducation course called Caregiving While Black-LIVE, which aims to support Black caregivers in coping with the demands of caring for persons with dementia more effectively.

How Is the Trial Designed?

Group I: Caregiving While Black-LIVE Experimental Treatment 1 Intervention

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

Caregiving While Black-LIVE is already approved in United States for the following indications:

Approved in United States as Caregiving While Black-LIVE for:

• Support for caregivers of persons with dementia

Who Is Running the Clinical Trial?

Emory University

Lead Sponsor

Trials

1,735

Recruited

2,605,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Published Research Related to This Trial

Black American women, aged 63 to 81, face unique challenges and obligations in caring for family members with Alzheimer's disease and related dementias, highlighting the need for tailored support and resources.

Key themes from their experiences include the importance of family obligations, health concerns, coping strategies, and the necessity for ongoing education and interdisciplinary collaboration in caregiving practices.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Navigating the Complexities of Dementia Care: The Lived Experiences of Black American Family Caregivers. Ramos, MD., Spearman, J., Heath, J., et al.[2023]

A study involving 23 African American Senior Companions showed that a 5-day, 20-hour psychoeducational training program significantly improved their knowledge about Alzheimer's disease.

The positive results suggest that culturally tailored training programs like the Senior Companion Program Plus could be a cost-effective way to support caregivers of individuals with dementia, highlighting the need for further research in this area.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Senior Companion Program Plus: A culturally tailored psychoeducational training program (innovative practice). Fields, NL., Xu, L., Richardson, VE., et al.[2022]

A study involving 32 African American caregivers highlighted the unique psychological and physical challenges they face while caring for family members with dementia, emphasizing the need for culturally sensitive interventions.

Key themes identified included the importance of family traditions in caregiving, the need for culturally appropriate care, and the desire for educational programs that enhance caregiver skills and promote self-care, reflecting the community's role in support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Experiences and Learning Needs of African American Family Dementia Caregivers. Samson, ZB., Parker, M., Dye, C., et al.[2022]

The study involved 24 African American Christian caregivers who participated in six online worship services over 8 weeks, focusing on culturally appropriate content for dementia caregivers.

While there were no significant changes in survey results, trends indicated potential improvements in caregivers' perceptions of their roles and relationships, highlighting the importance of culturally tailored resources for this group.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

"I Didn't Know I Needed to Be Still": Experiences of Black Dementia Caregivers Attending Tailored Online Worship Services. Sainz, M., James, T., Strader, U., et al.[2023]

The MIND intervention, a home-based dementia care program, effectively helped Black care partners by providing resources, socialization opportunities, and much-needed breaks, addressing significant challenges in dementia care within the Black community.

Participants identified key barriers such as difficulty accessing dementia information and familial support, suggesting that enhancing the program's cultural responsiveness and communication could further improve its effectiveness.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program. Sloan, DH., Johnston, D., Fabius, C., et al.[2022]

The Senior Companion Program Plus, a peer-led psychoeducational intervention for African American caregivers of Alzheimer's patients, showed improvements in social support and overall well-being among participants (N=16).

Caregivers reported enhanced knowledge about Alzheimer's disease and better coping skills, indicating that the lay provider model effectively supports caregivers in managing their responsibilities.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Utilizing the Senior Companion Program as a platform for a culturally informed caregiver intervention: Results from a mixed methods pilot study. Fields, NL., Xu, L., Richardson, VE., et al.[2021]

A pilot study involving 30 Black family caregivers of older adults with dementia revealed that many caregivers face health issues like obesity and hypertension, which can be worsened by caregiving stress.

The study identified effective coping strategies among caregivers, such as spiritual coping and information gathering, suggesting that clinicians should focus on promoting these strategies and providing resources for self-care and respite.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Coping and adaptation to dementia family caregiving: A pilot study. Robinson-Lane, SG., Zhang, X., Patel, A.[2022]

Black American older adults have a significantly higher prevalence of Alzheimer's disease and related dementias compared to non-Hispanic White older adults, highlighting the need for targeted support for this demographic.

The Black Family Socioecological Context Model emphasizes the complex interplay of social determinants affecting Black American dementia caregivers, suggesting that tailored interventions should focus on individual experiences and coping strategies to enhance their sense of mastery in caregiving.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Promoting Caregiver Mastery in Black American Dementia Caregivers. Bonds Johnson, K., Brewster, GS., Cicero, E., et al.[2022]

Citations

1.

pubmed.ncbi.nlm.nih.gov

pubmed.ncbi.nlm.nih.gov/38330399

Caregiving While Black: A Novel, Online Culturally Tailored ...

This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American.

2.

database.clin-star.org

database.clin-star.org/display/project-1R21AG08336601

Empowering Black Dementia Caregivers to Navigate Care

Determine sustained effects in engaging in Caregiving while Black-LIVE by collecting data 3 months after course completion. It is our long-term goal for this ...

3.

scholarblogs.emory.edu

scholarblogs.emory.edu/epps-faithvillage/research-projects/care/

CaREgiving While Black Course – Faith Village Research ...

Purpose. The overall goal of this project is to address the cultural reality of caring for someone living with dementia as a Black person in America.

4.

adrc.wisc.edu

adrc.wisc.edu/dementia-matters/caregiving-while-black-dementia-care-different-racial-and-ethnic-groups

Caregiving While Black: Dementia Care for Different Racial ...

Dr. Fayron Epps joins the podcast to talk about the unique experiences of African American caregivers and her lab's work to provide education and assistance to ...

5.

utcaregivers.org

utcaregivers.org/2021/09/09/caregiving-while-black/

Caregiving While Black - Caring for the Caregiver

Dementia-Friendly Online Worship Service Study. Purpose: To test the feasibility of online worship services tailored for dementia families.

6.

clinicaltrials.gov

clinicaltrials.gov/study/NCT06605391?cond=Dementia&aggFilters=status:act&viewType=Table&rank=10

Study Details | NCT06605391 | Caregiving While Black: LIVE

A phase of research to describe clinical trials that focus on the safety of a drug. They are usually conducted with healthy volunteers, and the goal is to ...

7.

withpower.com

withpower.com/trial/caregiving-course-for-dementia-2b3c8

Caregiving Course for Dementia · Info for Participants

This study will test the psychoeducation course, Caregiving while Black - Learning In Vital Engagement (LIVE), among Black caregivers providing care to ...