Bereavement Adaptation as Deflection Reduction: Bereaved Caregivers Define the Event of Dying

Affect control theory (ACT) has the potential to extend dominant understandings of adaptation to bereavement. Using narratives from bereaved caregivers, we assessed attributions they made about the death of a loved one from cancer. We transformed these attributions into actor-behavior-object events along the evaluation, potency, and activity dimensions of ACT. After creating hypothetical baseline deflections for events, we simulated the attributions as events in INTERACT. We found eight emergent categories of resolutions that caregivers used to make sense of the death: caregivers redefined the event to align with their sentiments about the deceased or the death. We also found racial differences in the attributions. White caregivers were more likely to blame themselves or others for the death of their loved one, while black caregivers were more willing to admit their deceased loved one’s faults. These findings demonstrate how caregivers make sense of their grief in a framework of cultural sentiments and underscore the utility of affect control theory in qualitative and theory-generating research.

Positive Aspects of Caregiving in Incident and Long-Term Caregivers: Role of Social Engagement and Distress

Positive aspects of caregiving (PAC) are positive appraisals that caregivers report about their role such as feeling appreciated or important, and may increase with caregiver adaptation over time. We aimed to examine differences in PAC by caregiving duration and social engagement, controlling for measures of distress. A total of 283 African American or White caregivers from the Caregiving Transitions Study with a wide range of caregiving durations were included in our analysis. We used multivariable linear regressions to model total PAC score on years of caregiving and social engagement (social network, monthly social contact), adjusting for age, sex, race, marital status, relationship to care recipient, dementia status of care recipient and measures of distress (depressive symptoms, perceived stress, caregiving strain). Caregivers with higher social engagement reported significantly higher PAC while caregivers with longer duration of care reported marginally higher PAC in most analytic models. African American caregivers reported higher PAC compared to White caregivers. Dementia caregivers reported lower PAC than non-dementia caregivers in models that adjusted for demographic variables and social network size, but the association was attenuated with the addition of caregiving strain. In summary, higher social engagement and longer care duration were associated with higher PAC after adjusting for demographic variables and measures of distress. Future studies should aim to understand how caregivers shift appraisal to positive aspects of their role and explore implementation of interventions targeting PAC in order to improve the caregiving experience.

Factors Associated With Engaging in Regular Physical Activity Among Women Family Caregivers

Regular physical activity is important for promoting the health of family caregivers. In this study, we used data from the 2015 and 2017 Behavioral Risk Factor Surveillance System Questionnaire-Caregiver module to examine factors associated with meeting physical activity guidelines among women caregivers. Meeting physical activity guidelines was defined as participating in 150 minutes (or vigorous equivalent minutes) of physical activity weekly. We used survey-weighted multivariate regression analyses to examine relationships between sociodemographic, caregiving, and health characteristics and meeting physical activity guidelines. All variables were entered into the model simultaneously. The Wald test was used to test the significance of interactions between race and ethnicity and other covariates. 50.7% of 10,542 women caregivers met physical activity guidelines. The amount of time spent caregiving each week was not associated with the odds of meeting guidelines. Caregivers in the paid workforce had decreased odds (OR=0.73, 95%CI [0.62-0.87]) of meeting guidelines. Compared to women caregiving for <6months, women caregiving for 6 months to 2 years had increased odds of meeting guidelines (OR =1.33, 95%CI [1.08-1.64]). Increasing education was associated with an increased odds of meeting guidelines, but being college educated had a more positive effect for Hispanic than white caregivers (pinteraction=0.03). Having children did not affect the odds of meeting guidelines for white caregivers, but for black caregivers having two or more children decreased the odds (pinteraction=0.03). Understanding how sociodemographic, caregiving, and health characteristics impact engagement in regular physical activity is critical to designing effective interventions and ultimately improving the health of caregivers.

The Preparedness for Caregiving Scale in African American and White Caregivers of Hospitalized Persons With Dementia

This study evaluated the Preparedness for Caregiving Scale (PCS) upon discharge from the hospital. The caregivers reported a mean age of 60.5 years (SD=13.9). The majority of caregivers were female (72%), married (59%), non-Hispanic/Latino (98%) and either white (52%) or African American (48%). Fifty percent were employed outside of the home and averaged 40.7 (SD= 14.4) hours of outside work per week. The average PCS was 24.4 (SD=6.9, 0-32). One-factor structure of the PCS and measurement invariance by race was fully supported. Predicative validity revealed significant association between the PCS and anxiety (β =-.41, t = -7.61(287), p <.001), depression (β =-.44, t =-8.39 (287), p <.001), and strain (β =-.48, t =-9.29(287), p <.001). The PCS is a valid and meaningful tool to measure preparedness in African American and white family caregivers of persons with dementia during post- hospitalization transition.

Experiences of Black and White Family Hospice Caregivers: Anxiety, Depression, QOL, Burden, Hospice Communication

Although hospice care benefits seriously ill patients and their families, growing evidence suggests anxiety, depression, and altered quality of life are prevalent among family hospice caregivers. It is unknown if Black and white family hospice caregivers experience differences in mental health, quality of life, caregiver burden, or quality of hospice communication. In this secondary analysis of baseline data collected from 717 family hospice caregivers in two randomized clinical trials, we compared anxiety (GAD-7), depression (PHQ-9), quality of life (CQLI-R), caregiver burden (Zarit), and caregiver-reported quality of hospice team communication (CCCQ) between Black and white caregivers. Black and white caregivers differed demographically across multiple variables. In bivariate analysis, we found no differences in depression (P=0.3536), anxiety (P=0.0733), caregiver burden (P=0.6680), and perceptions of caregiver-centered hospice communication (P=0.4549). White caregivers reported lower quality of life than Blacks (P=0.0386), specifically in emotional (P=0.0321) and social (P=0.0002) domains. Financial and physical quality of life did not differ. In multivariate regression analyses controlling for caregiver and patient factors, we found no racial differences in depression (P= 0.5071), anxiety (P = 0.7288), quality of life (P=0.0584), caregiver burden (P=0.9465), or hospice communication (P=0.8779). Variables explained 7.7% to 20% of variability in outcomes, suggesting research is needed to understand which other factors contribute to hospice caregiver coping and communication experiences. Results suggest Black and white informal hospice caregivers experience similar levels of anxiety, depression, burden, and perceptions of hospice team communication quality. Interventions to support hospice caregivers across racial groups are needed.

Evaluation of the Caregiver Preparedness Scale in African American and White Caregivers of Persons With Dementia During Post-Hospitalization Transition

Background and PurposeThe Preparedness for Caregiving Scale (PCS) is a widely used instrument to measure caregiver preparedness. The purpose was to evaluate the PCS in African American and White caregivers of patients with dementia upon discharge from the hospital.MethodsFactor structure, measurement invariance, and predictive validity of the PCS were assessed in a sample of 292 family caregivers/patient dyads.ResultsOne-factor structure of the PCS and measurement invariance by race was fully supported. Predicative validity revealed significant association between the PCS and anxiety (β = −.41, t = −7.61(287), p < .001), depression (β = −.44, t = −8.39(287), p < .001), and strain (β = −.48, t = −9.29(287), p < .001).ConclusionThe PCS is a valid and meaningful tool to measure preparedness in African American and White family caregivers of persons with dementia during post-hospitalization transition.

Money Follows the Person and Informal Caregivers: Insights Into a New Stage of the Caregiving Career

The Money Follows the Person (MFP) program transitions people to the community after extended institutional stays. This study examines effects of this transition on informal caregivers in this new caregiving career stage. Analyses explore whether and how MFP affects caregivers according to caregiver race/ethnicity, and care recipient age and disability type. Data come from surveys with 686 caregivers of persons in Connecticut’s MFP from November 2014-November 2018. Using Pearlin’s Caregiver Stress Process Model, bivariate and multivariate analyses examine predictors of multiple caregiver well-being indicators. Care recipients: older adults (50%), and younger persons with physical (35%), mental health (8%) or developmental (7%) disabilities. Caregivers: non-Hispanic White (62%), non-Hispanic Black (24%), and Hispanic (14%). Caregivers’ average assistance is 5 days/week, 6 hours/day, with 3 activities of daily living and 5 instrumental activities; 11% are paid for caregiving. Compared to other community-based samples, they report low mean levels of burden (4.7 of 16), anxiety (2.2 of 18) and depressive symptoms (31%), and high positive feelings about caregiving (9.5 of 12). A majority feel less stressed (60%) or no change in stress (20%) compared to before and during the institutional stay. Caregivers across the four care recipient groups don’t differ on most outcomes, although more caregivers of people with developmental disabilities (82% vs. 55-61%) report less stress once the person transitions. Black and Hispanic caregivers report more intensive caregiving, but White caregivers report more burden and subjective stress. Findings illustrate the benefits of programmatic support during a newly defined post-institutionalization caregiving career stage.

A New Stage of the Caregiving Career: Informal Caregiving After Long-term Institutionalization

Background and Objectives The “unexpected career” of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post–long-term institutionalization, about which little is known. Using Pearlin’s Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Research Design and Methods Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut’s MFP program 2014–2018, completed 6 months posttransition. Results Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant’s institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. Discussion and Implications By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.

Racial Differences in Respite Use among Black and White Caregivers for People Living with Dementia

Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers ( n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee. Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.

Race Differences in Characteristics and Experiences of Black and White Caregivers of Older Americans

Background and Objectives Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects. Research Design and Methods Study participants include white (n = 992) and black (n = 556) respondents to the 2015 National Study of Caregiving who assisted community-dwelling older adults with disabilities who participated in the National Health and Aging Trends Study. Guided by Pearlin’s Stress Process Model, hierarchical logistic regression models were constructed to examine race differences in caregiving-related effects after adjusting for caregiving context, stressors, and resources. Results Relative to white caregivers, blacks more often provided in excess of 40 hr of care per week (54.3% vs 38.6%) and more often cared for an older adult with dementia (27.1% vs 20.7%) who was living below the federal poverty line (31.7% vs 11.9%) or was Medicaid-eligible (42.2% vs 11.8%). Black caregivers more often used supportive services (32.9% vs 24.8%). In fully adjusted regression models, black caregivers were more likely to report gains and less likely to report emotional difficulty than whites. Service utilization did not attenuate caregiving-related emotional difficulty or participation restrictions, regardless of race. Discussion and Implications Findings highlight caregiving disparities and counterintuitive differences in experiences and indicate the importance of identifying supports such as paid family leave and faith and community-based programming to better support community-dwelling low-income older adults and their family and unpaid caregivers.