Caregiving Intensity Research Articles

Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric Hematopoietic Stem Cell Transplant.

Background: Parents of children recovering from hematopoietic stem cell transplant (HSCT) experience significant distress due to unpredictable and potentially life-threatening complications. Distress is heightened by intensive caregiving parents provide the child during the first 100 days after HSCT. Management of distress and adaptation to caregiving responsibilities may be enhanced if parents find benefit in their experiences through posttraumatic growth (PTG), yet little is known about how parents' experiences after HSCT foster PTG. This study aimed to explore how parents experience caregiving and PTG 100 days after children's HSCT. Methods: Thirty-one parents completed semi-structured interviews ∼100 days after children received HSCT. Results: Four major themes emerged from the data to describe parent experiences after HSCT: (1) psychosocial and healthcare contextual factors; (2) cognitive, affective, and social support reactions to HSCT; (3) problem-based, emotion-based, and cognitive coping strategies; and (4) PTG. Discussion: Results increase the understanding of how parents' experiences and caregiving responsibilities contribute to PTG. These findings may guide future research to understand how these experiences influence PTG. Nurses are integral to the parents' experiences. Future work should focus on nursing interventions that enhance positive reinterpretation of parents' experiences after their children's HSCT.

Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria.

Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future.Supplementary InformationThe online version contains supplementary material available at 10.1007/s10433-021-00611-z.

Caregiver support and place of death among older adults.

As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers. United States; all places of deaths. Three-hundred and seventy-five decedents and 267 LML caregivers. Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty). 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323]). Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths.

Positive psychological states and stress responses in caregivers of adults receiving an allogeneic bone marrow transplant: A study protocol.

This protocol directs a study that aims to: (a) describe the caregiver's experience over 8-12weeks after an index adult patient's allogeneic bone marrow transplant (BMT) for advanced cancer using a case-oriented approach and mixed methods, with qualitative methods in the foreground; and (b) explore networks of relationships among psycho-neurological symptoms, positive psychological states and caregiver health. Case-oriented longitudinal design using multiple data types and analytic approaches. Data will be collected from 10-12 caregivers. The sample will be recruited from a large public hospital in the southeastern United States using maximum variation sampling (e.g., caregiver race/ethnicity, relationship to patient, age, education, and number of caregiving roles). Participants will be asked to complete weekly surveys, have their blood drawn bi-weekly and participate in an interview each month during the study period (~100days). Aim 1 analysis will include directed content analysis and case-oriented visual analysis. Aim 2 analysis will include symptom network estimation of psycho-neurological symptoms, positive psychological states, and caregiver health. Institutional review board approval was obtained August 2018. Results will provide an in-depth description of caregivers' experiences in the 100days after BMT. Findings will inform generation of hypotheses and identification of targets for interventions to improve caregiver's experiences after BMT. This in-depth multi-method longitudinal study to describe caregivers of adult patients receiving an allogeneic BMT is an essential step in understanding caregivers' complex responses to chronic stress and the role of positive psychological states. The results from this study will inform future research on chronic stress processes, intense caregiving, and intervention development.

Caregiving intensity and caregiver burden among caregivers of people with dementia: The moderating roles of social support

Using the Pearlin stress process model, the present study aimed to test if there was an association between caregiving intensity and caregiver burden, to analyze what type of association existed, and to test if different indicators of social support moderated such association among caregivers of people with dementia. Data from the baseline assessment of the Resources for Enhancing Alzheimer's Caregiver Health (REACH II) (N = 637) were used. Caregiver burden (12-item Zarit caregiver burden scale), caregiving intensity (caregiving hours), and social support (Lubben social network, received support, satisfaction with support, and negative interactions) were the main measurements. Separate multivariate regression models were conducted with Stata 16. The results showed that the relationship between caregiving hours and caregiver burden was a nonlinear inversed U shape after controlling all of the socio-demographic variables. Further analyses showed that when caregiving hours reached 14 hours per day, the levels of burden were the highest. In addition, received support, satisfaction with support, and social network significantly buffered the relationship between caregiving hours and caregiver burden when they were examined separately. However, only social network played a significant buffering role when examining the four social support indicators simultaneously. These findings suggest the need for programs and practices that emphasize the importance of identifying, gaining, and strengthening positive aspect of social support, especially in how to broaden a caregiver's social network while caring for a family member with dementia.

Exploring Changes in Caregiver Burden and Caregiving Intensity due to COVID-19.

This study explored self-reported changes in caregiving intensity (CI) and caregiver burden (CB) among informal caregivers due to the COVID-19 pandemic overall and by gender. Informal caregivers for someone age 50+ completed a survey via Amazon’s MTurk in June 2020. Participants reported changes in CI and CB due to COVID-19 and provided demographic information. Multinomial logistic regression models assessed changes in CI and CB attributed to the COVID-19 pandemic overall and by gender. The sample (n = 835) was 68.5% male and had an average age of 34 years (SD 9.8); 55.7% had increased CI, and 53.1% had increased CB attributed to the pandemic. Increased CB due to COVID-19 was associated with increased CI (OR 5.67, 95% CI 3.92–8.00). Male caregivers with decreased CI due to COVID-19 were nearly seven times as likely as those with no change in CI to have reduced CB due to COVID-19 (OR 6.91, 95% CI 3.29–14.52). Women with decreased CI due to COVID-19 were over eight times as likely to have reduced CB due to COVID (OR 8.30, 95% CI 2.66–25.91). Results indicate that many caregivers experienced increases in CI and CB since the start of the COVID-19 pandemic, and that these changes are complex and vary by gender.

Unpaid Caregiving and Labor Force Participation among Chinese Middle-Aged Adults.

Unpaid family caregivers must consider the economic trade-off between caregiving and paid employment. Prior literature has suggested that labor force participation (LFP) declines with caregiving intensity, but no study has evaluated this relationship by accounting for the presence of both kinks and discontinuities. Here we used respondents of the China Health and Retirement Longitudinal Study baseline survey who were nonfarming, of working age (aged 45–60) and had a young grandchild and/or a parent/parent-in-law. For women and men separately, a caregiving threshold-adjusted probit model was used to assess the association between LFP and weekly unpaid caregiving hours. Instrumental variables were used to rule out the endogeneity of caregiving hours. Of the 3718 respondents in the analysis, LFP for men was significantly and inversely associated with caregiving that involved neither discontinuities nor kinks. For women, a kink was identified at the caregiving threshold of eight hrs/w such that before eight hours, each caregiving hour was associated with an increase of 0.0257 in the marginal probability of LFP, but each hour thereafter was associated with a reduction of 0.0014 in the marginal probability of LFP. These results have implications for interventions that simultaneously advance policies of health, social care and labor force.

The Impact of COVID-19 on Informal Caregivers in the US

Background: Caregiver burden has negative effects on mental and physical health along with quality of life. Meanwhile, social and physical distancing protocols during the COVID-19 pandemic have created additional impacts on informal caregiving in a rapidly changing environment. Early research over the past year suggests that the pandemic has caused increased caregiver burden as well as caregiving intensity among these individuals. Purpose: Our primary purpose in this informational literature review is to describe the impacts of the pandemic on informal caregiver burden and the sudden shift in roles and responsibilities as a result of pandemic-related changes in caregiving. This review will describe emerging effects on various aspects of health among informal caregivers and explore the growing need to support unpaid caregiving during this time. Methods: A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and up-to-date mainstream resources were utilized. Notably, we focused on research published or released since March 2020, primarily rapidly reviewed studies, to align with the timing of the COVID-19 pandemic in the US. Results: Early research suggests that the pandemic has worsened caregiver burden and increased caregiving intensity and hours of care among unpaid, informal family caregivers. Reported health impacts include higher stress, pain, and depression, along with decreased social connectedness and quality of life. Notably, however, COVID-related research generally does not focus on the positive aspects of caregiving, such as its role as a source of purpose in life, creating an opportunity to explore ways to boost certain valuable personal resources among caregivers. Conclusions: Informal family caregivers face their own negative health outcomes and distress as a result of greater caregiver burden, intensity, and the changing landscape of caregiving during the ongoing COVID-19 pandemic. Immediate policy and support recommendations should be considered to alleviate informal caregiver burden and provide ongoing resources over the longer term. In addition, future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.

Characteristics of Caregiving and Work-Related Burdens for Adult Children Caring for Older Parents

This study helps expand our knowledge on the link between caregiving and work by examining how characteristics of caregiving—intensity and regularity of care—relate to work. It is among the first studies to recognize that regularity of care might be linked with work independently of intensity of care. Moreover, unlike previous studies that imply the impact of caregiving on work based on the difference in the likelihood of working and total hours worked between caregivers and non-caregivers, our study uses the explicit reports from caregivers of the impact of caregiving on their ability to do paid work and, conditional on working, hours of work lost due to caregiving. We pool data from the first three waves of the National Study on Caregiving (NSOC) that has detailed information on family and other unpaid caregivers of Medicare beneficiaries ages 65 and older. We use a structural equation modeling approach to accommodate the complex nature of the relationships between work-related outcomes, intensity and regularity of care as the key predictors of interest, and other relevant caregivers’ and care recipients’ personal characteristics that are related with both the outcomes of interest and key predictors. Results provide tentative evidence that caregivers are more likely to miss work and, if working, work fewer hours if they provide more care and if they need to provide it more frequently. At any given level of caregiving intensity, more frequent care provision is related with more adverse work-related outcomes.

Intergenerational Ties in Context: Association between Caring for Grandchildren and Cognitive Function in Middle-Aged and Older Chinese.

Grandchild caregiving is suggested to improve the elderly’s cognitive function, but the specific relationship remains under-investigated. Considering gender disparity, this study aimed to understand the relationship between grandchild caregiving and cognition. In total, 7236 Chinese residents (≥45 years old) were selected from the 2015 China Health and Retirement Longitudinal Study (CHARLS). The China Health and Retirement Longitudinal Study Harmonized Cognitive Assessment Protocol (CHARLS-HCAP) was used to measure cognition. Grandparenting was measured from three dimensions: caregiving frequency, intensity, and the number of grandchildren cared for. The relationship was examined by multivariate linear regression, with age as a moderator. The results showed that the majority of respondents provided care to their grandchildren, especially grandmothers. Grandchild caregiving was positively associated with cognition (β = 0.686, 95% CI = 0.334–1.038), especially in the older-aged group. Moderate, not regular grandparenting, or caring for one grandchild was more positively associated with cognitive function. However, intensive and regular grandchild care was significantly associated with cognition only in men. No moderating effects of age were found in women. The study confirmed that moderate intensity and frequency of caregiving was related to better cognitive function in middle-aged and older Chinese population, whereas cultural context and gender differences could be considered when designing targeted policies.

Exploration of COVID-19-Based Changes to Caregiver Burden and Caregiving Intensity among Informal Caregivers

Individuals providing unpaid care of assistance to family members and friends (e.g. informal caregivers), may have been uniquely impacted by the COVID-19 pandemic. Research is needed to examine the pandemic’s effect on informal caregivers’ caregiving intensity and burden. Therefore, this cross-sectional study was conducted to explore self-reported changes in caregiver intensity (CI) and caregiver burden (CB) due to the pandemic to identify factors associated with changes in responsibilities and burdens. In June 2020, informal caregivers providing care to someone aged 50+ (n=835) reported their current and pre-pandemic caregiving intensity and burden. Data were collected via Amazon’s Mechanical Turk. Chi-square tests were used to examine bivariate associations between pandemic time (pre vs. post) differences in CI and CB. Multinomial regression was used to assess multivariate predictors of changes to CI and CB due to COVID-19. Results showed a significant U-shaped association between initial CB and CB change due to COVID-19. Higher levels of initial CB were associated with both a significant decrease in CB during COVID-19 (OR 1.33, 95%CI 1.06-1.67), and a significant increase in CB during COVID-19 (OR 1.22, 95%CI 1.05-1.43). There were no significant associations between initial CB and changes in CI due to COVID-19, although older caregivers were more likely to experience a decrease in CB due to caregiving (OR 1.02, 95%CI 1.00-1.05). These mixed results suggest that caregivers with high initial CB experienced the most extreme changes to CB due to COVID-19. Future planned analyses will focus on understanding the potential drivers behind these unexpected results.

Rural-Urban Differences in Informal Caregiving, Caregiving Intensity, and Health-Related Quality of Life

Introduction Rural areas in the US have a disproportionately high population of older adults and have reduced access to services. Older adults in rural areas are more reliant on family and friends for care. However, little is known about rural-urban disparities among the 40+ million caregivers nationwide. As rural-urban health disparities are pervasive among older adults, there is a need to understand how rural-urban disparities impact caregiving experiences and health-related quality of life (HRQoL). The objectives of this study were to examine rural-urban differences caregiving, caregiving intensity (caregiving hours/week and types of care provided), and caregiver HRQoL. Methods Data were abstracted from the 2009 Behavioral Risk Factor Surveillance System (latest dataset to include county of residence and caregiver module). The primary measure of rural-urban status was Index of Relative Rurality (IRR) decile. Associations between rural-urban status and caregiving and rural-urban differences in caregiving intensity and HRQoL were examined using generalized linear models, controlling for confounding and accounting for complex sampling. Results Rural respondents were more likely to be caregivers than urban respondents (IRR decile OR=1.015, 95%CI 1.014-1.016). Rural caregivers, on average, provided 2.43 hours/week more caregiving for each one-decile increase in IRR decile (95%CI 2.34-2.52) and had worse overall HRQoL (OR=1.34, 95%CI 1.33-1.35). Conclusion Rural informal caregivers offer higher levels of care than urban counterparts, and increased caregiving in rural areas is associated with reduced HRQoL. These results can inform policies designed to improve caregiver health, and facilitate the translation of existing programs and interventions to address rural caregivers’ needs.

Geographic Distance and Social Isolation Among Family Caregivers Providing Care to Older Adults

Family caregiving is associated with social isolation, but the role of geographic distance between caregiver and receiver in caregiving experience is unclear with mixed research findings. This study examined the relationship between geographic distance and caregiver social isolation (CSI), and explored the interaction between geographic distance and caregiving intensity in association with CSI. Based on the Ecological Model of Caregiver Isolation, hierarchical linear regression and ANCOVA analyses were applied to conduct data analysis with the 2012 Canadian General Social Survey (N=2,881). Caregivers living a short distance from receivers reported the lowest CSI than coresident, moderate and long distance caregivers. Being involved in higher intensity caregiving as the primary caregiver, undertaking more caregiving tasks, and providing care more frequently resulted in higher CSI scores. Additionally, long and moderate distance caregivers reported greater CSI than coresident and short distance caregivers only when providing higher intensity caregiving. Geographic distance is a salient contextual factor affecting CSI, and longer distance creates environmental barriers for caregiving provision. Employing a granulated measure of geographic distance positioned within an ecological framework facilitates an understanding of the nuanced association between geographic proximity and CSI. Furthermore, the identified interactive effects between geographic distance and caregiving intensity on CSI further reveal the complexity of caregiving experience. The findings are relevant for programs supporting caregivers in different contexts, especially physical distance.

The Differential Effects of Caregiving Intensity on Overnight Hospitalization in the Previous 2 Years

Caregiving for a spouse is considered a major stressor many Americans will encounter during their lifetimes. Although most studies indicate caregiving is associated with experiencing diminished health outcomes, little is known about how this role affects caregivers’ use of acute health services. To understand how spousal caregiving affects the use of acute health services, we use data from the Health and Retirement Study. We apply fixed effects (FE) logistic regression models to examine odds of experiencing an overnight hospitalization in the previous two years according to caregiving status, intensity, and changes in caregiving status and intensity. Models controlled for caregiver gender, age, race, ethnicity, educational attainment, health insurance status, the number of household residents, and self-assessed health. Overall, caregivers were no more likely to experience an overnight hospitalization compared to non-caregivers (OR 0.92; CI 0.84 to 1.00; p-value=0.057). However, effects varied according to the intensity of caregiving and the time spent in this role. Compared to non-caregivers, for example, spouses who provided care to someone with no need for assistance with activities of daily living had lower odds of experiencing a hospitalization (OR 0.77; CI 0.66 to 0.89). In contrast, caregivers who provided care to someone with dementia for 4 to <6 years had 3.29 times the odds of experiencing an overnight hospitalization (CI 1.04 to 10.38; p-value=0.042). Findings indicate that, although caregivers overall appear to use acute health services about as much as non-caregivers, large differences exist between caregivers. Results emphasize the importance of recognizing diversity within caregiving experiences.

Caregiving Intensity and Caregiver Burden Among Dementia Caregivers: The Moderating Roles of Social Support

Objective: Using the stress-coping theory, the aims of the present study were to test what levels of caregiving intensity (hours actually spent on caregiving every day) posed the most negative influence on caregiver burden as well as how social support moderated such associations among dementia caregivers. Methods: Data from the baseline assessment of the Resources for Enhancing Alzheimer’s Caregiver Health (REACH II) (N = 637) were used. Caregiver burden (12-item Zarit caregiver burden scale), caregiving intensity (caregiving hours), and social support (Lubben social network, received support, satisfaction with support, and negative interactions) were the main measurements. Separate multivariate regression models were conducted with Stata 16. Results: The results showed that the relationships between caregiving hours and caregiver burden were nonlinear after controlling all of the socio-demographic variables. Further analyses showed that when caregiving hours reached 13.50 hours per day, the levels of burden were the highest. In addition, received social support, satisfaction with social support, and social network significantly moderated the relationship between caregiving hours and caregiver burden among dementia caregivers when they were examined separately. However, only social network played a significant moderator role when examining the four social support indicators simultaneously. Discussion and conclusion: These findings suggest the need for programs and practices on educating caregivers regarding how to identify, approach, and gain social support/s, especially in how to broaden the caregivers’ social network while caring for a family member with dementia.

Social and Physical Contexts of Long-Term Services and Supports

In the coming years, inevitably growing numbers of older populations will yield more older Americans with extensive medical and long-term care needs. This will lead to an increasing need for long-term services and supports (LTSS) to assist older adults with routine daily activities (e.g., bathing, dressing, medication management). There is a growing interest in understanding how social and physical environments contribute to health outcomes and the provision of services and resources for older persons with disabilities requiring assistance from LTSS. Decisions about care and subsequent experiences are likely a result of factors that extend beyond personal preference or individual factors, such as neighborhood quality, housing context, and living situations (i.e., homebound status) among community-dwelling older adults. Given population aging and the shift of LTSS from nursing homes toward community settings, there is a pressing need for more information about contextual factors that might help better develop supports for vulnerable older adults. This symposium will feature four presentations that provide novel insight regarding social and physical contextual factors contributing to LTSS. Presentations leverage data from the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries aged 65 and older, and will describe: 1) associations between individual and home environment risk-factors, neighborhood-level social deprivation, and falls; 2) the relationship between neighborhood-level social deprivation and caregiving intensity (number of hours of caregiving per week) among community-dwelling older adults; 3) associations between living in single-family vs. multi-unit housing and social networks; and 4) community tenure among homebound older adults.

Neighborhood Social Deprivation and Caregiving Intensity for Community-Dwelling Older Adults With Disabilities

There is growing interest in the role of “place” in the provision of long-term services and supports (LTSS) for older adults with disabilities, who receive ~16 billion hours of care per year from family and unpaid caregivers, but information is lacking. Using data from the 2015 National Health and Aging Trends Study (NHATS) linked to census-tract-level information from the American Community Survey, we described the association between caregiving intensity (hours of care received per week) and neighborhood social deprivation among N=2125 community-dwelling older adults with disabilities. Individuals receiving 40 hours or more of help per week had greater levels of functional impairment and dementia, and more often lived in neighborhoods at the highest quartile of social deprivation compared to those receiving fewer than 20 hours of care (26.8% vs. 21.7%, respectively). Findings have policy implications for targeting LTSS strategies toward addressing inequities in social determinants of health for vulnerable populations.

The Impact of Caregiving Intensity and Religiosity on Spouse Caregivers’ Health and Mortality in the United States (2004–2014)

Prior research has indicated that religiosity may buffer against the deleterious effects of caregiving. However, research is lacking in examining the role of religiosity and caregiving intensity in the context of caregiver wellbeing and mortality. Data come from the Health and Retirement Study (2004-2014 waves) and consisted of spousal caregivers and noncaregivers (n= 49,638 person-spells). Pearlin’s Stress Process Model (1990) informed this study to analyze how religiosity impacts caregiver self-rated health and mortality by comparing the intensity of provided care among spousal caregivers and spousal noncaregivers. This study used two indicators to measure religiosity: 1) the importance of religion in life and 2) frequency of attending religious services. Bivariate probit model was used to model the impact of caregiving intensity and religiosity on self-rated health and all-cause mortality. After controlling for sociodemographic and health covariates, results showed that only the importance of religion in life predicted a better self-rated health among high intense spouse caregivers defined by providing >=14 hours of care per week. Findings suggest religiosity may buffer the adverse effect of caregiving stress on health for high intense spousal caregivers. Development and maintenance of religiosity may enhance positive aspects of caregiving and decrease caregiver burden.

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.

Role Overload, Perceived Gratitude, and Health Among Spousal Caregivers: A Longitudinal Study

Spouses are likely the most vulnerable caregivers due to their advanced age and more intense caregiving than other family members. Thus, it is crucial to identify risk and protective factors for spousal caregivers’ health. According to Pearlin’s stress process model, caregivers’ subjective stressors and resources may impact their health. We focused on spousal caregivers’ role overload, a critical indicator of subjective stressors, and their perception that the partner is grateful for their help, which may be beneficial for their health but has rarely received attention. This study tested the hypotheses that spousal caregivers’ higher role overload and lower perceived gratitude are associated with poorer physical and mental health over time. We also examined whether greater perceived gratitude buffers the negative relationships between role overload and health. We focused on 223 spousal caregivers of older adults without dementia from the 2015 and 2017 National Study of Caregiving. Autoregressive models revealed that spousal caregivers’ higher role overload at baseline was associated with poorer self-rated health at follow-up (b = -0.23, p < .05), but not with depressive symptoms or anxiety. Spousal caregivers’ greater perceived gratitude at baseline was associated with lower anxiety at follow-up (b = -0.32, p < .01). There were no moderating effects of perceived gratitude on the relationships between role overload and health. These findings suggest that spousal caregivers’ role overload is a risk factor for their physical health, while their perception that the partner is grateful for their help serves as a protective factor for their mental health.