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.

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 Relationship Between Engagement in Online Support Groups and Social Isolation Among Military Caregivers: Longitudinal Questionnaire Study.

BACKGROUND: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. OBJECTIVE: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. METHODS: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. RESULTS: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. CONCLUSIONS: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms.

Informal Caregivers' Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study.

BACKGROUND: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions. OBJECTIVE: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans. METHODS: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention. RESULTS: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers. CONCLUSIONS: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.

Early life adversity and adult biological risk profiles.

OBJECTIVES: To determine whether there is a relationship between early life adversity (ELA) and biological parameters known to predict health risks and to examine the extent to which circumstances in midlife mediate this relationship. METHODS: We analyzed data on 1180 respondents from the biomarker subsample of the second wave of the National Survey of Midlife Development in the United States. ELA assessments were based on childhood socioeconomic disadvantage (i.e., on welfare, perceived low income, and less educated parents) and other stressors (e.g., parental death, parental divorce, and parental physical abuse). The outcome variable was cumulative allostatic load (AL), a marker of biological risk. We also incorporate information on adult circumstances, including than following: education, social relationships, and health behaviors. RESULTS: Childhood socioeconomic adversity and physical abuse were associated with increased AL (B = 0.094, standard error = 0.041, and B = 0.263, standard error = 0.091 respectively), with nonsignificant associations for parental divorce and death with AL. Adult education mediated the relationship between socioeconomic ELA and cumulative AL to the point of nonsignificance, with this factor alone explaining nearly 40% of the relationship. The association between childhood physical abuse and AL remained even after adjusting for adult educational attainments, social relationships, and health behaviors. These associations were most pronounced for secondary stress systems, including inflammation, cardiovascular function, and lipid metabolism. CONCLUSIONS: The physiological consequences of early life socioeconomic adversity are attenuated by achieving high levels of schooling later on. The adverse consequences of childhood physical abuse, on the other hand, persist in multivariable-adjusted analysis.

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.

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.

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.

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.

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.

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.

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.

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.

Promises and Pitfalls of Health Information Technology for Home- and Community-Based Services.

Background: Health information technology (HIT) use in home- and community-based services (HCBS) has been hindered by inadequate resources and incentives to support modernization. We sought to understand the ways the Medicaid Balancing Incentive Program (BIP) facilitated increased use of HIT to increase access to HCBS. Method: Qualitative analysis of interviews with 30 Medicaid administrators, service agency providers, and consumer advocates. Results: Although stakeholders perceived several benefits to greater HIT use, they highlighted critical challenges to effective adoption within the long-term services and supports (LTSS) system, including lack of extant expertise/knowledge about HIT, the limited reach of HIT among rural and disabled beneficiaries, burdensome procurement processes, and the ongoing resources required to maintain up-to-date HIT solutions. Conclusion: The structural reforms required by BIP gave states an opportunity to modernize their HCBS systems through use of HIT. However, barriers to HIT adoption persist, underscoring the need for continued support as part of future rebalancing efforts.

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.

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.

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.