(WITHDRAWN) Dementia Caregiving Experiences: The Moderating Role of Race and Ethnicity

Background and Purpose: The U.S. population is rapidly aging as the Baby Boomer generation becomes older. As advanced age is the most significant risk factor for Alzheimer’s and related diseases (ARD), the increased number of older adults will lead to a higher incidence of ARD in the population. Although the highest proportion of older adults with ARD is non-Hispanic Whites, African-Americans and Hispanics aged 65 and older show higher incidence rates of ARD than their White counterparts.

Currently, a majority of ARD patients are cared for by informal caregivers in their home, with older adults of color relying more heavily on home care than their White counterparts due to cultural values. Caregivers’ ethnicity and cultural values differently influence their appraisal of caregiving experiences and physical and mental health outcomes. The long duration of ARD and gradual increase in patient’s dependence on caregivers make caregiving more demanding. ARD caregivers also find positive aspects of caregiving and their race/ethnicity affects perceived benefits from caregiving.

Based on these trends, this study has two aims: 1) explore the relation between ARD caregivers’ characteristics, perceived burden (PB), and subjective benefits (SB); and 2) examine whether ARD caregivers’ race/ethnicity moderates the relation between PB and SB. 

Methods: We used a sample of 1,000 caregivers of people with dementia from the ‘Caregiving in the US 2009-Dementia Caregiving’ dataset. The majority identified as White (81.63%), followed by African-American (7.73%), Hispanic (4.12 %), and Asian (6.53%). A hierarchical regression was used to examine associations with PB and SB. Specifically, the control variables (caregivers’ age, health) and independent variables (caregivers’ gender, relationships to care recipients) were entered in step 1, moderating variables (caregivers’ races) were added in step 2, and in step 3, we added interaction terms.

Results: Among ARD caregivers, poorer caregiver health, caring for a spouse, longer duration of caregiving, and assisting with more activities were associated with greater PB. Race moderated associations between female caregivers and PB. Among women, Hispanics had the highest level of PB (M=20.29, SD=5.31) followed by Whites (M=17.39, SD=5.59), and African-Americans reported the lowest levels of burden (M =16.09, SD=5.10). Younger (p=.025) and non-kin caregivers (p=.012) experienced significant SB from providing care. African-American and Hispanic caregivers reported more SB from caregiving than their White counterparts. Race moderated the effects of hours spent caregiving and SB. As hours spent caregiving increased, African-American caregivers reported more SB (M=227.21, SD=5.10); and among caregivers who spent over 40 hours per week, both African-American and Hispanic caregivers showed significantly higher SB than White caregivers (p<.05).

Conclusions and Implications: Race moderated the association between female ARD caregivers and perceived burden and between hours spent caregiving and subjective benefits from caregiving. These different caregiving experiences among the different caregiver race/ethnic groups indicate a need to develop culturally-tailored caregiver support programs. Finally, further research is needed to identify factors contributing to positive aspects of caregiving resulting in higher levels of subjective benefits reported among African-American and Hispanic caregivers despite similar levels of objective caregiving burden as White caregivers.