It's a Family Affair: Addressing the Needs of Black Caregivers Through a Community Based Dementia Caregiver Program

Author/ Authors/ Presenter/ Presenters/ Panelists:

Tonya S. Roberson PhD, MPH, DTR, Governors State UniversityFollow

Location

D34005

Start Date

3-31-2023 1:30 PM

End Date

3-31-2023 2:45 PM

Other Presentation Disciplines:

Dementia
Caregiver
African American
Community-Engaged Research

Abstract

Background: Racial disparities exist in dementia diagnosis, co-morbid health conditions, and socioeconomic characteristics between older Black and White adults, compounding caregiving responsibilities for Black families; yet few dementia caregiving programs offer culturally competent, family-centered dementia caregiving programs for Black individuals. In a collaboration between two community-based organizations (CBO) and an academic medical center, we sought to establish a culturally tailored, family-centered, dementia caregiving program for Black individuals on Chicago's Far South Side. Methods: A team of stakeholders identified by the CBOs was convened to discuss the need for the proposed program and co-designed a key informant interview guide. The team conducted virtual key-informant interviews among Black caregivers of family members with dementia who are residents of the far south side of Chicago. Results: We conducted 30 interviews. Caregivers were an average of 57 years old, predominantly female (85%), and primarily caring for parents or grandparents. Many shared caregiving responsibilities with other family members. Caregivers recommended the program focus on five top concerns related to their caregiving experience: 1) feelings of stress and burden while being committed to their family member with dementia, 2) education on the progression of dementia and discussion of cultural beliefs, 3) personal experiences with racism and intersectional identities, 4) kinship responsibilities and managing dementia-specific changes that occur with loved ones, and 5) a need for respite and local medical and community-based resources. Conclusion: This feedback will help elevate Black dementia caregiver experiences to better understand the influence that race and culture has on Black caregivers, cultivate a family-centered caregiver program, and contribute to the field because minimal research has focused on Black family-centered dementia caregiving to build capacity in routine caregiving and reduce caregiver stress.

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Mar 31st, 1:30 PM Mar 31st, 2:45 PM

It's a Family Affair: Addressing the Needs of Black Caregivers Through a Community Based Dementia Caregiver Program

D34005

Background: Racial disparities exist in dementia diagnosis, co-morbid health conditions, and socioeconomic characteristics between older Black and White adults, compounding caregiving responsibilities for Black families; yet few dementia caregiving programs offer culturally competent, family-centered dementia caregiving programs for Black individuals. In a collaboration between two community-based organizations (CBO) and an academic medical center, we sought to establish a culturally tailored, family-centered, dementia caregiving program for Black individuals on Chicago's Far South Side. Methods: A team of stakeholders identified by the CBOs was convened to discuss the need for the proposed program and co-designed a key informant interview guide. The team conducted virtual key-informant interviews among Black caregivers of family members with dementia who are residents of the far south side of Chicago. Results: We conducted 30 interviews. Caregivers were an average of 57 years old, predominantly female (85%), and primarily caring for parents or grandparents. Many shared caregiving responsibilities with other family members. Caregivers recommended the program focus on five top concerns related to their caregiving experience: 1) feelings of stress and burden while being committed to their family member with dementia, 2) education on the progression of dementia and discussion of cultural beliefs, 3) personal experiences with racism and intersectional identities, 4) kinship responsibilities and managing dementia-specific changes that occur with loved ones, and 5) a need for respite and local medical and community-based resources. Conclusion: This feedback will help elevate Black dementia caregiver experiences to better understand the influence that race and culture has on Black caregivers, cultivate a family-centered caregiver program, and contribute to the field because minimal research has focused on Black family-centered dementia caregiving to build capacity in routine caregiving and reduce caregiver stress.