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

40 Participants Needed

Trial Summary

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 data supports the effectiveness of the treatment Caregiving While Black-LIVE for dementia caregivers?

Research suggests that culturally tailored programs like the Senior Companion Program Plus, which focus on education and support for African American dementia caregivers, can improve caregivers' knowledge, coping skills, and social support, indicating potential benefits for similar treatments like Caregiving While Black-LIVE. ^{1 2 3 4 5}

Is the Caregiving Course for Dementia safe for participants?

The available research on similar programs, like the Senior Companion Program Plus, suggests that these interventions are generally safe and beneficial for caregivers, improving their knowledge and coping skills without reported safety concerns. ^{3 4 5 6 7}

How is the Caregiving While Black-LIVE treatment different from other treatments for dementia caregivers?

Caregiving While Black-LIVE is unique because it is a culturally tailored program specifically designed for African American dementia caregivers, focusing on their unique cultural needs and experiences. It incorporates elements like spiritual coping and community resources, which are not typically emphasized in standard caregiver interventions. ^{1 3 4 5 8}

What is the purpose of this trial?

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.

Research Team

Fayron Epps, PhD, RN

Principal Investigator

Emory University

Eligibility Criteria

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

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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]

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]

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]

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]

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]

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]

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]

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]

References

1. United States pubmed.ncbi.nlm.nih.gov

Coping and adaptation to dementia family caregiving: A pilot study. [2022]

2. England pubmed.ncbi.nlm.nih.gov

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program. [2022]

3. United States pubmed.ncbi.nlm.nih.gov

Experiences and Learning Needs of African American Family Dementia Caregivers. [2022]

4. England pubmed.ncbi.nlm.nih.gov

The Senior Companion Program Plus: A culturally tailored psychoeducational training program (innovative practice). [2022]

5. England 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. [2021]

6. United States pubmed.ncbi.nlm.nih.gov

Navigating the Complexities of Dementia Care: The Lived Experiences of Black American Family Caregivers. [2023]

7. United States pubmed.ncbi.nlm.nih.gov

Promoting Caregiver Mastery in Black American Dementia Caregivers. [2022]

8. United States pubmed.ncbi.nlm.nih.gov

"I Didn't Know I Needed to Be Still": Experiences of Black Dementia Caregivers Attending Tailored Online Worship Services. [2023]