Experiences of African American Dementia Caregivers During the COVID-19 Pandemic

African American caregivers are often confronted with the complexities of caregiving through the lens of race and associated health disparities. The COVID-19 pandemic has both exacerbated the systemic disparities and deeply rooted inequities experienced by African Americans and laid bare their effects on the community of caregivers. The purpose of this project was to explore the experiences of African American dementia caregivers during the COVID-19 pandemic. Nineteen African American caregivers of persons living with dementia were recruited by primary investigators and community partners with purposeful sampling techniques to participate in semi-structured focus groups that were held April 2021. Four overarching themes were constructed during thematic analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges in fulfilling the caregiver role. Caregivers expressed that they became socially isolated from family and friends, which led to them becoming depressed and mentally strained. Several caregivers felt they could not carry out their caregiver duties due to the constraints surrounding the pandemic. The varying levels of interaction with and the comfort level of physicians utilizing telehealth led to caregivers having mixed reviews on the popularized service. The results of this study will be used to culturally adapt caregiving education courses and programs promoting mastery and competency during a pandemic. In preparations for future public health crises, healthcare professionals will be able to use the results of this study to address the specific needs and improve the experiences of African American dementia caregivers.

Pain Among African American Family Caregivers: Association With Health Outcomes

African Americans experience high rates of undermanaged pain as they age. African Americans often become family or informal caregivers, and undermanaged pain may have implications for their overall health and ability to perform caregiving tasks. The purpose of this study was to examine if pain was related to overall health and number of caregiving activities among African American caregivers. We used data from round 7 of the National Study of Caregiving (N= 646 African American caregivers, mean age= 57 years [SD=15]). Pain over the prior month was participant-assessed. Of this sample, 451 (69.7%) were women, 324 (50.1%) had pain, and 309 (47.8%) had multiple comorbidities. The number of caregiving activities ranged from 8 to 14 with mean of 11.6 (SD= 1.4). In a logistic regression model, controlling for income, education, and comorbidities, we found having pain in the last month was associated with lower likelihood of very good or excellent health (Adjusted OR 0.48; 95% CI 0.33 to 0.69) and greater likelihood of having depressive symptoms (Adjusted OR 2.04; 95% CI 1.34 to 3.10). In a linear regression model, however, pain was not significantly related to the number of caregiving activities (R2 = 0.04). Findings suggest that while pain is related to poorer physical and mental health outcomes among African American caregivers, even pain does not deter them from providing care for care recipients. Management of pain among African American caregivers may be beneficial for improving their own overall health and mental health.

Using a Warm Hand-Off Approach to Enroll African American Caregivers in a Multi-Site Clinical Trial: The Handshake Protocol

“Testing Tele-Savvy” was a three-arm randomized controlled trial that recruited participants from four National Institute on Aging (NIA)–funded Alzheimer’s Disease Centers with Emory University serving as the coordinating center. The enrollment process involved each center providing a list of eligible caregivers to the coordinating center to consent. Initially, the site proposed to recruit primarily African American caregivers generated a significant amount of referrals to the coordinating center, but a gap occurred in translating them into enrolled participants. To increase the enrollment rate, a “Handshake Protocol” was established, which included a warm handoff approach. During preset phone calls each week, the research site coordinator introduced potential participants to a culturally congruent co-investigator from the coordinating center who then completed the consent process. Within the first month of implementation, the team was 97% effective in meeting its goals. This protocol is an example of a successful, innovative approach to enrolling minority participants in multi-site clinical trials.

Ethnicity Moderating the Relationship of Cognition Function of Patients With Dementia on Caregiver Depression

The purpose of this study was to see if ethnicity (African-American and Caucasian) moderates the predictive effects of cognition functioning in patients with dementia on caregivers’ severity of depressive symptoms. Secondary data analyses were conducted from Resources for Enhancing Alzheimer’s Caregiver Health (REACH II; 2001-2004). The participants consisted of 214 African American and 321 Caucasian participants (N = 535). The assessment battery included the Center for Epidemiologic Depression Scale (CES-D) to measure depression severity, Mini-Mental State Exam (MMSE) to measure level of cognitive function, and demographic questionnaire to gain information about caregivers and care-recipients. ANOVAs and ANCOVAs were used to examine ethnic group differences in care-recipient cognitive functioning in predicting caregiver depression. Caucasian caregivers reported significantly higher levels of depression and care-recipients’ cognitive function compared to African American caregivers, ps<.05. A custom ANCOVA indicated a significant interaction between ethnicity and care-recipient cognitive functioning on caregiver depression with greater effects of care-recipient cognitive function on caregiver depression for the African American caregivers than for the Caucasian caregivers, p=.02. Descriptively, the depression severity for the Caucasian caregivers remained relatively high across levels of care-recipients’ cognition. The findings indicated that ethnicity moderated the effects of care-recipient cognitive functioning on caregiver self-report of depressive symptoms. These findings suggest greater resiliency in African -American caregivers supporting their dementia or dementia-related condition care-recipients (Dias et al., 2015). These findings support the need to develop cultural specific interventions to better support the wellbeing of caregivers of care-recipients with dementia or dementia-related conditions.