Perceived loss of support to community caregivers during the COVID-19 pandemic in the United States.

Coronavirus disease (COVID-19) had a negative impact on the health and well-being of community caregivers. Few studies examine the pandemic's negative impact on the availability of social networks of caregivers. This article uses data collected during COVID-19 before vaccination to examine caregivers' reports of perceived lost and reduced network support. We assessed the personal networks of a nationally representative sample of 2214 community caregivers in the United States. We analyzed associations between caregiving factors and caregivers' perceptions of lost and reduced network support. Changes in care recipient living circumstances during COVID-19, longer-term caregiving, care recipient hearing/vision/mobility problems, caregiver travel/socializing restrictions, caregiver race/ethnicity, caregiver income, caregiver age, network connectivity, family relationships, and network members' age were associated with perceived lost/reduced support during the pandemic. Findings provide insights for the development of social network interventions to support caregivers and help them cultivate support networks resilient to public health crises.

Increased Care Provision and Caregiver Wellbeing: Moderation by Changes in Social Network Care Provision.

OBJECTIVES: Previous research links increased care provision to worse wellbeing among family and friend caregivers, both before and during the coronavirus disease 2019 (COVID-19) pandemic. We expand on this by incorporating data on caregivers' social networks and exploring the relationships between own and network changes in care during the pandemic and caregiver wellbeing. METHODS: We use nationally representative data from 1,876 family and friend caregivers in the first wave of our Care Network Connections over Time study (fielded 12/17/2020-1/4/2021) who had provided care continuously since before the COVID-19 pandemic began. Caregivers were asked about the amount of care that they and each member of their social networks were providing at the time of the survey relative to before the pandemic. We use multivariate regression models to examine the associations between five caregiver wellbeing outcomes and changes in care, and explore the moderating role of networks' changes in care. RESULTS: Among caregivers who had provided care since prior to the pandemic, most increased (42.0%) or maintained the same (40.8%) care. Their networks also typically increased (33.4%) or maintained (46.5%) care. Increasing one's own care provision was associated with higher levels of anxiety, depression, loneliness, and emotional difficulty than maintaining stable care. Among those who increased care, these levels were highest when the network also increased or decreased care. DISCUSSION: Increased care provision was most strongly associated with poor caregiver wellbeing in contexts where caregivers' social networks also changed care provisions. Supports for caregivers undertaking additional care tasks should take into account caregivers' networks.

The Changing Demography of Late-Life Family Caregiving: A Research Agenda to Understand Future Care Networks for an Aging U.S. Population.

Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older persons in need of assistance or the increasing heterogeneity of the older population. In this paper, we set forth a framework that places family caregiving in the context of older adults' care needs, the alternatives available to them, and the outcomes of that care. We focus on care networks, rather than individuals, and discuss the demographic and social changes that may alter the formation of care networks in the future. Last, we identify research areas to prioritize in order to better support planning efforts to care for the aging U.S. population.

Change in Caregiving to Older Adults During the COVID-19 Pandemic: Differences by Dementia Status.

We use a nationally representative study of 3451 adults who provided assistance to a relative or friend age 50 or older immediately prior to the Coronavirus Disease 2019 (COVID-19) pandemic to explore changes to care provisions, use of services, and support networks. While we see turnover in assistance during a retrospectively assessed 12-month time period, respondents exited or adopted caregiving roles primarily for reasons unrelated to the pandemic. About two thirds of caregivers' social networks remained unchanged and, of those that did change, only half lost network members without gaining others. Changes in care settings and use of support services were uncommon. Caregivers to persons with dementia may have been more adversely affected than other caregivers as they were more likely to experience loss of social ties, potentially performing more care activities without the full support system they had in place prior to the pandemic.

Barriers and Facilitators to Home- and Community-Based Services Access for Persons With Dementia and Their Caregivers.

OBJECTIVES: The United States has seen increasing shifts toward home- and community-based services (HCBS) in place of institutional care for long-term services and supports. However, research has neglected to assess whether these shifts have improved access to HCBS for persons with dementia. This paper identifies HCBS access barriers and facilitators, and discusses how barriers contribute to disparities for persons with dementia living in rural areas and exacerbate disparities for minoritized populations. METHODS: We analyzed qualitative data from 35 in-depth interviews. Interviews were held with stakeholders in the HCBS ecosystem, including Medicaid administrators, advocates for persons with dementia and caregivers, and HCBS providers. RESULTS: Barriers to HCBS access for persons with dementia range from community and infrastructure barriers (e.g., clinicians and cultural differences), to interpersonal and individual-level barriers (e.g., caregivers, awareness, and attitudes). These barriers affect the health and quality of life for persons with dementia and may affect whether individuals can remain in their home or community. Facilitators included a range of more comprehensive and dementia-attuned practices and services in health care, technology, recognition and support for family caregivers, and culturally competent and linguistically accessible education and services. DISCUSSION: System refinements, such as incentivizing cognitive screening, can improve detection and increase access to HCBS. Disparities in HCBS access experienced by minoritized persons with dementia may be addressed through culturally competent awareness campaigns and policies that recognize the necessity of familial caregivers in supporting persons with dementia. These findings can inform efforts to ensure more equitable access to HCBS, improve dementia competence, and reduce disparities.

Effects of Childcare, Work, and Caregiving Intensity on Male and Female Family Caregivers.

OBJECTIVES: The Behavioral Risk Factor Surveillance System sampled 54,076 caregivers between 2015 and 2017 providing an opportunity to evaluate risk factors for poor mental and physical health among a representative sample of U.S. adult caregivers. This study aimed to evaluate the impact of childcare, work status, and intensity of caregiving among men and women caring for older adults (n = 17,271). METHODS: Controlling for sociodemographic factors, separate logistic regression analysis for women and men were carried out to assess the main and interaction effects of childcare, work status, and intensity of caregiving on number of poor mental and physical health days in the last month. RESULTS: Intensive caregiving demands had adverse effects on both women and men, but being in the workforce was beneficial to both men and women. Women with children at home reported adverse mental health effects but better physical health, while men with children at home reported adverse physical health effects. For women, the combination of not working, children in the household, and high-intensity caregiving were most detrimental to their mental health. Among men, those not working with children in the household, regardless of caregiving intensity, were at highest risk of adverse mental health effects. DISCUSSION: Our findings identify caregivers at high risk of adverse outcomes but also point to the need for more fine-grained analyses of how families negotiate the allocation of childcare, work, and caregiving responsibilities over time.

Out-of-Pocket Health Care Spending at Older Ages: Do Caregiving Arrangements Matter?

Identifying the correlates of out-of-pocket (OOP) health care spending is an important step for ensuring the financial security of older adults. Whether or not someone has a family member providing assistance is one such factor that could be associated with OOP spending. If family caregivers facilitate better health, health care spending could be reduced. On the other hand, costs would be higher if family members facilitate more (or more costly) care for loved ones. This paper explores the relationship between caregiving arrangements and OOP spending using data from 5045 individuals in the 2000-2016 Health and Retirement Study with Medicare coverage and caregiving needs. We do not find a relationship between family caregiving and OOP health care costs, overall. However, among those with Medicare HMO insurance, having a family caregiver is associated with more spending than having no helper. This is mainly due to differences in spending on prescription medications.

Low Exposure to Home- and Community-Based Services Among U.S. Adults: Cause for Concern?

Home- and community-based services (HCBS) facilitate community living for older adults and persons with disabilities, but limited awareness of HCBS is a significant barrier to access. Social exposure is one potential conduit for HCBS knowledge. To understand the general population's social exposure to HCBS-that is, knowing someone who has used HCBS (including one's self)-we fielded a survey item with a nationally representative panel of U.S. adults. An estimated 53% of U.S. adults reported not knowing anyone who had used HCBS. Exposure rates were low across specific HCBS types (6%-28%). Women had greater exposure than men for eight of the 11 HCBS. We also found differences by age, racial/ethnic identity, rurality, education, and income. Increasing the general public's awareness of HCBS may facilitate access when services are needed, enhance readiness for aging in place, and increase the visibility and inclusion of older adults, persons with disabilities, and caregivers.

Prevalence and Correlates of Gray Market Use for Aging and Dementia Long-Term Care in the U.S.

OBJECTIVES: To estimate the national prevalence and sociodemographic correlates of gray market utilization, consisting of paid providers who are unrelated to the recipient, not working for a regulated agency, and potentially unscreened and untrained, for aging and dementia-related long-term care. METHODS: We surveyed a nationally representative sample of 1,037 American Life Panel respondents aged 18 years and older. RESULTS: Nearly a third of Americans who arranged paid care sought gray market care for persons with dementia, and most (65%) combined it with unpaid care. Respondents who arranged gray market care had 66% lower odds of currently working, and those living in rural areas had an almost 5-times higher odds of arranging dementia gray market care. DISCUSSION: Gray market care represents a substantial proportion of paid, long-term care for older adults and may fill gaps in access to care.

A Simple Method for Simulating Dementia Onset and Death within an Existing Demographic Model.

BACKGROUND: Dementia is a common disease that has an impact on both the affected individual and family members who provide caregiving. Simulation models can assist in setting policy that anticipates public health needs by predicting the demand for and availability of care. OBJECTIVE: We developed a relatively simple method for simulating the onset of dementia that can be used in combination with an existing microsimulation model. METHODS: We started with Socsim, a demographic microsimulation model that simulates a population with family kinship networks. We simulated dementia in the Socsim population by simulating the number of individuals diagnosed with dementia in their lifetime and the ages of onset and death from dementia for each of these dementia cases. We then matched dementia cases to the simulated population based on age at death, so for each individual, we simulate whether they develop dementia and, if so, their age at onset. This approach simulates dementia onset but does not alter the demographic model's simulated age of death. RESULTS: We selected model dementia parameters so that the combined Socsim-Dementia model reproduces published dementia prevalence rates and survival times after diagnosis. CONCLUSIONS: Adding simulation of dementia to a kinship network model enables prediction of the availability of family caregivers for people with dementia under a range of different assumptions about future fertility, mortality, and dementia risk. We demonstrated how to add simulation of dementia onset and death to an existing microsimulation model to obtain a method for predicting dementia prevalence in the context of another more detailed model. The approach we developed can be generalized to simulate other progressive health conditions that affect mortality.

Trends In Home Care Versus Nursing Home Workforce Sizes: Are States Converging Or Diverging Over Time?

There is strong preference among people with disabling conditions to receive care at home rather than in an institutional setting. Differences in state policies may make this more feasible in some states than others. Yet no study to date has examined trends in the long-term care workforce across states. Using state-level data on direct care workers from the period 2009-20, we examine trends in the sizes of the nursing home and home care workforces. We show that since 2009 most states have increased the size of their home care workforces and decreased the size of their nursing home workforces, but there is substantial variation across states in the magnitude of these changes. In addition, the gap between leading and lagging states in home care workforce size has grown over time. This suggests that more targeted efforts may be needed to ensure that people with disabling conditions can have their needs met in their desired setting across the nation.

Perceived impacts of a Medicaid rebalancing initiative to increase home- and community-based services.

OBJECTIVE: To assess governmental and nongovernmental stakeholders' perceived impacts of a Medicaid home- and community-based services (HCBS) rebalancing initiative, the Balancing Incentive Program (BIP). DATA SOURCES: Governmental stakeholders (Medicaid administrators) and nongovernmental stakeholders (service providers and consumer advocates) (n = 30) from eight states that participated in BIP. STUDY DESIGN: We conducted key informant interviews. DATA COLLECTION: Interviews followed a semi-structured guide and were professionally transcribed. We thematically coded transcripts using an iterative codebook with a priori and emergent codes. PRINCIPAL FINDINGS: Stakeholders reported that BIP participation had a range of impacts on the HCBS ecosystem, often beyond the mandated structural reforms. BIP activities were believed to have changed the culture of HCBS in some states, for example, at the level of state administration or in the provision of HCBS to consumers. Stakeholders also described significant improvements in cross-stakeholder relationships and communication, for example, in the context of troubleshooting consumers' unmet needs or improvements in the states' responsiveness to providers' inquiries. Stakeholders believed that within-state data harmonization undertaken through Core Standardized Assessment (CSA) was a positive impact of BIP, particularly with regard to its utility for administrative data, care planning, and patient-centeredness. Two stakeholders also voiced concerns regarding the validity of spending-based rebalancing metrics. The impacts that stakeholders attributed to BIP may help create a more sustained rebalancing environment through their changes to the ecosystem, including infrastructure upgrades, data harmonization, collaboration across stakeholders and agencies, more patient-centeredness, and greater recognition of HCBS. CONCLUSIONS: Our findings highlight additional BIP impacts to monitor over the longer term and to consider in evaluations of future rebalancing efforts. Some potential impacts of BIP are more readily quantified (e.g., HCBS spending), while others are less likely to be formally assessed (e.g., improved stakeholder cooperation). These latter impacts are likely instrumental to future rebalancing efforts.

Typologies of Dementia Caregiver Support Networks: A Pilot Study.

BACKGROUND AND OBJECTIVES: There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. RESEARCH DESIGN AND METHODS: We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members' support to the caregiver and help to the care recipient. RESULTS: We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. DISCUSSION AND IMPLICATIONS: This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

Factors Explaining State Differences in Applying for a Recent Long-Term Care Program that Promotes Aging in Place: Perspectives of Medicaid Administrators.

Older adults in need of assistance often prefer to remain at home rather than receive care in an institution. To meet these preferences, Medicaid invited states to apply for the Balancing Incentive Program (BIP), a program intended to "rebalance" Medicaid-financed long-term services and supports to Home- and Community-Based Services (HCBS). However, only about half of eligible states applied. We interviewed Medicaid administrators to explore why some states applied for BIP whereas others did not. Supportive state leadership and the presence of other programs supporting community-based care were positively related to BIP application. Opposing policy priorities and programs competing for similar resources were negatively related to BIP application. Because states most likely to apply already had policy goals and programs supporting HCBS, BIP may inadvertently widen disparities across states, pushing those on the margins ahead and leaving the ones that are worst off in HCBS support to fall even further behind.

Caregiving Factors as Predictors of Care Recipient Mortality.

OBJECTIVE: Assess a conceptual model linking caregiving factors to care recipient mortality in a large representative sample of older adults with disability. DESIGN: Descriptive longitudinal study with 5-year mortality follow-up among older adults with disability. Baseline in person and telephone interviews/assessments of older adults with disability and their family caregivers carried out in 2011. SETTING: Representative samples of older US population and their family caregivers. PARTICIPANTS: US representative samples of older adults with disability aged 65 and over (National Health and Aging Study) and their family caregivers (National Study of Caregiving; www.nhats.org; N = 1,262). MEASUREMENT: Controlling for known risk factors for mortality in older adults, including age, gender, race, education, socioeconomic status, disability, and cognitive status, we assess the role of three caregiving factors (depression, anxiety, and burden) and three mediating factors (care recipient depression, anxiety, and unmet needs for care) as predictors of care recipient mortality. RESULTS: Caregiver burden, care recipient depression, and care recipient unmet needs are independent predictors of care recipient mortality. CONCLUSION: Caregiving factors may play an important role in the survival of their care recipients. This is a relatively unexplored research area that calls for fine-grained studies capturing caregiver-care recipient health-related interactions over time.

The Foreclosure Crisis, Community Change, and the Cognitive Health of Older Adults.

OBJECTIVES: While home foreclosures are often thought of as a household-level event, the consequences may be far-reaching, and spill over to the broader community. Older adults, in particular, could be affected by the spiral of community changes that result from foreclosures, but we know very little about how the foreclosure crisis is related to older adult health, in particular cognition. METHOD: This article uses growth curve models and data from the Health and Retirement Study matched to Census and county-level foreclosure data to examine whether community foreclosures are related to older adults' cognitive health and the mechanisms responsible. RESULTS: We find that higher rates of county-level foreclosures are associated with a faster decline in individual cognition at older ages. Although we examined an extensive number of individual and community mechanisms, including individual housing wealth and depressive symptoms, community structural factors, social factors, and perceptions of physical disorder and cohesion, none of the mechanisms examined here explained this relationship. DISCUSSION: This study shows that the adverse consequences of home foreclosures spill over to the local community, with implications for the cognitive health of older adults.

Quantity, timing, and type of childhood adversity and sleep quality in adulthood.

OBJECTIVE: We investigated how quantity, timing, and type of childhood adversity were associated with subjectively reported and actigraphically measured sleep in adulthood. DESIGN: This is a cross-sectional design. SETTING: Data were collected from three clinical sites at the University of California, Los Angeles; the University of Wisconsin-Madison; and Georgetown, in the Washington, DC area. PARTICIPANTS: The participants were a group of 863 U.S. adults aged 25-76 years who participated in the Biomarker Project in the Midlife in the United States Refresher study. MEASUREMENT: Subjective sleep was measured by the Pittsburgh Sleep Quality Index and actigraphic sleep measures included sleep-onset latency, sleep efficiency, wake time after sleep onset, and total sleep time. Participants retrospectively reported whether they experienced 18 adverse events before age 18 years and the ages they experienced the events. RESULTS: Childhood adversity, operationalized as quantity (i.e., the total number of adverse events or experiencing 3 or more adverse events) and timing (i.e., experiencing adverse events during both childhood and adolescence) of adverse events, was related to worse subjective and actigraphic sleep (except for total sleep time) after adjusting for age, sex, and race. Models using the cumulative (i.e. dose-response) number of adverse events fit better than models using the timing and type specifications of childhood adversity in relation to subjective or actigraphic sleep measures (except for total sleep time). CONCLUSIONS: These findings highlight the importance of considering the quantity of childhood adversity in relation to self-reported and actigraphically measured sleep in adulthood.

Adverse Consequences of Unmet Needs for Care in High-Need/High-Cost Older Adults.

OBJECTIVES: We explore adverse consequences of unmet needs for care among high-need/high-cost (HNHC) older adults. METHOD: Interviews with 4,024 community-dwelling older adults with ADL/IADL/mobility disabilities from the 2011 National Health and Aging Trends Study (NHATS). Reports of socio-demographics, disability compensatory strategies, and adverse consequences of unmet needs in the past month were obtained from older adults with multiple chronic conditions (MCC), probable dementia (DEM), and/or near end-of-life (EOL) and compared older adults not meeting these criteria. RESULTS: Older adults with MCC (31.6%), DEM (39.6%), and EOL (48.7%) reported significantly more adverse consequences than low-need older adults (21.4%). Persons with MCC and DEM (53.4%), MCC, and EOL (53.2%), and all three (MCC, DEM, EOL, 65.6%) reported the highest levels of adverse consequences. HNHC participants reported more environmental modifications, assistive device, and larger helper networks. HNHC status independently predicted greater adverse consequences after controlling for disability compensatory strategies in multivariate models. DISCUSSION: Adverse consequences of unmet needs for care are prevalent among HNHC older adults, especially those with multiple indicators, despite more disability-related compensatory efforts and larger helper networks. Helping caregivers provide better informal care has potential to contain healthcare costs by reducing hospitalization and unplanned readmissions.

Work Performance Among Informal Caregivers: A Review of the Literature.

Objectives: To examine the association between informal caregiving and caregiver work performance. Method: A systematized review of the literature. Results: We found that caregiving has an adverse impact on work performance: caregivers experience substantial work disruptions and negative work performance outcomes, and these findings were consistent across measures. Our synthesis suggests that caregivers miss a significant amount of work and have reductions in productivity due to their caregiving responsibilities. However, significant methodological limitations with the reviewed studies make systematic interpretations and causal determinations challenging. Discussion: Examining the effect of caregiving on work performance is critical to better understand the full impact of caregiving, especially as demand for caregivers increases as the population ages. This comprehensive review suggests that caregiving has a significant negative impact on work performance, although methodological challenges remain in this area of science. These findings should inform both public policy development and workplace benefits design.