Unmet Needs and Factors Impacting Home- and Community-Based Service Use Among Rural Appalachian Caregivers of People With Alzheimer's and Dementia.

Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) living in rural areas face significant health and healthcare challenges. Limited research, however, has explored factors shaping their use of home- and community-based services (HCBS). This study identifies unmet needs among caregivers of people with ADRD in rural Western North Carolina and highlights contextual factors that facilitate HCBS use. Nineteen qualitative interviews were conducted with 21 family caregivers and 1 person with ADRD between 2021 and 2022. Thematic analyses revealed unmet needs among caregivers for information, service navigation, and caregiving support. HCBS use was shaped by multiple factors including illness needs, cultural beliefs, preferences for home-based care, and place-based resources. These findings suggest that culturally tailored HCBS are needed to support people with ADRD and their caregivers in rural Appalachian communities, especially those which facilitate access to paid caregiving, clearly communicate program eligibility requirements, and emphasize service availability.

Feasibility of training family caregivers of people living with dementia online to deliver life review depression intervention at home.

OBJECTIVES: To alleviate the high prevalence of depressive symptoms and dementia in older Americans (≥65 years), we developed a depression intervention, Caregiver-Provided Life Review (C-PLR), and taught family caregivers life review skills online compared to a synchronous group virtual training, and examined the feasibility and delivery impact (N = 20 dyads). METHOD: In a cross-sectional, mixed-methods dyadic design, we recruited family caregiver-care recipient dyads nationwide, collected the pre- and post-intervention measures on care recipients' depression (primary outcome), life satisfaction, caregivers' burden, caregiving rewards, and dyads' relationship quality (secondary outcomes), and compared them using t-tests. We took fidelity scores to measure caregivers' feasibility of delivering life reviews adhering to the protocol. RESULTS: Care recipients' depressive symptoms declined significantly following the C-PLR intervention (p = 0.034) and caregivers' rewards increased from the pre- to post-period (p = 0.019). Caregivers' qualitative interviews supported the quantitative results that online-trained caregivers' ability to deliver the intervention with high adherence to protocol (15.9 ± 0.27 out of 16) without increasing caregiver burden. CONCLUSION: This pilot study suggested that the C-PLR could make a positive impact on both caregivers' and care recipients' mental health. This innovative, cost-effective, and easily implemented activity can be used by any dyad regardless of whether they have any health-related deficits.

Trajectories and Transitions in Service Use Among Older Veterans at High Risk of Long-Term Institutional Care.

BACKGROUND: We aimed to identify combinations of long-term services and supports (LTSS) Veterans use, describe transitions between groups, and identify factors influencing transition. METHODS: We explored LTSS across a continuum from home to institutional care. Analyses included 104,837 Veterans Health Administration (VHA) patients 66 years and older at high-risk of long-term institutional care (LTIC). We conduct latent class and latent transition analyses using VHA and Medicare data from fiscal years 2014 to 2017. We used logistic regression to identify variables associated with transition. RESULTS: We identified 5 latent classes: (1) No Services (11% of sample in 2015); (2) Medicare Services (31%), characterized by using LTSS only in Medicare; (3) VHA-Medicare Care Continuum (19%), including LTSS use in various settings across VHA and Medicare; (4) Personal Care Services (21%), characterized by high probabilities of using VHA homemaker/home health aide or self-directed care; and (5) Home-Centered Interdisciplinary Care (18%), characterized by a high probability of using home-based primary care. Veterans frequently stayed in the same class over the three years (30% to 46% in each class). Having a hip fracture, self-care impairment, or severe ambulatory limitation increased the odds of leaving No Services, and incontinence and dementia increased the odds of entering VHA-Medicare Care Continuum. Results were similar when restricted to Veterans who survived during all 3 years of the study period. CONCLUSIONS: Veterans at high risk of LTIC use a combination of services from across the care continuum and a mix of VHA and Medicare services. Service patterns are relatively stable for 3 years.

Characteristics of Informal Caregivers and Social Participation of People With Dementia.

BACKGROUND AND OBJECTIVES: Social participation is associated with increased quality of life and well-being but declines following the onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities. RESEARCH DESIGN AND METHODS: This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving. NHATS respondents with possible or probable dementia and an informal caregiver were included (N = 1,060). Respondents were asked whether they participated in each of 5 social activities during the past month. Valued activities were considered somewhat or very important. Survey-weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities. RESULTS: Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/nonrelative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (odds ratio [OR] = 1.88, p = .016), attending religious services (OR = 4.82, p < .001), and volunteering (OR = 3.25, p = .015), whereas greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR = 1.37, p = .022). DISCUSSION AND IMPLICATIONS: Assets of informal primary caregivers found to promote social participation of people with dementia include traveling to the person with dementia's home, being socially active themselves, and utilizing support services.

Changes in Health Indicators Among Caregivers - United States, 2015-2016 to 2021-2022.

Caregivers provide support to persons who might otherwise require placement in long-term care facilities. Approximately one in five U.S. adults provides care to family members or friends who have a chronic health condition or disability. Promoting the well-being of this large segment of the population is a public health priority as recognized by the 2022 National Strategy to Support Family Caregivers. Although negative associations between caregiving and caregiver health are known, changes in the health status of caregivers over time are not. Data from the 2015-2016 and 2021-2022 Behavioral Risk Factor Surveillance System were analyzed to compare changes in the prevalence of 19 health indicators among cross-sectional samples of caregivers and noncaregivers at different time points. Caregivers experienced improvements in prevalence of four health indicators, whereas six worsened. Some health indicators, such as cigarette smoking, improved for both caregivers and noncaregivers, although smoking prevalence remained higher for caregivers (16.6% versus 11.7%). Prevalence of lifetime depression increased for both groups and remained higher among caregivers (25.6%) than among noncaregivers (18.6%). During 2021-2022, age-adjusted estimates for caregivers were unfavorable for 13 of the 19 health indicators when compared with noncaregivers. Strategies for supporting caregivers are available, and integrating these with existing programs to address mental health and chronic diseases among this population might improve caregiver well-being. For example, many community organizations support caregivers by offering interventions designed to relieve caregiver strain, including skills training, support groups, and care coordination.

Associations of Cognitively Active Versus Passive Sedentary Behaviors and Cognition in Older Adults.

BACKGROUND: Cognitively stimulating sedentary behavior (SB) may positively impact cognition. This study aimed to (1) describe participation across types of SB among older adults with and without cognitive impairment and (2) examine how baseline SB participation impacts cognition, longitudinally. METHODS: We used National Health and Aging Trends Study data from rounds 6 to 11 for cross-sectional and longitudinal analyses. Participants were 2244 community-dwelling older adults who were selected for the SB module in round 6. The SBs were categorized as active (eg, hobbies) and passive (eg, television). Participants were also categorized as having intact or impaired orientation, memory, and executive function based on tests of orientation, recall, and the clock-drawing test. We calculated descriptive statistics characterizing SB by cognitive status. Aim 2 involved competing risks proportional hazard models of participants with intact cognition (n = 1574) to identify associations between baseline SB and changes in cognition, moves to institutional care, and death over 6 years. RESULTS: Participants (40% ≥ 80 years, 55% female, 77% White non-Hispanic) averaged 8.75 (SD = 4.42) hours of daily SB, including 4.05 (SD = 2.32) hours of passive SB and 4.75 (SD = 3.13) hours of active SB. Active SB >3 hours per day was associated with a lower risk of impaired orientation (subdistribution hazard models = 0.60; P = .048) and memory (subdistribution hazard models = 0.62; P = .02). Baseline participation in passive SB did not impact the risk of having a change in cognition during rounds 7 to 11. CONCLUSION: Cognitive decline was lower among older adults who participated in more active SB. Thus, type of SB should be considered in examining the impact on cognition.

Sex differences in unmet needs between male and female older veterans.

Aging Veterans face complex needs across multiple domains. However, the needs of older female Veterans and the degree to which unmet needs differ by sex are unknown. We analyzed responses to the HERO CARE survey from 7,955 Veterans aged 55 years and older (weighted N = 490,148), 93.9% males and 6.1% females. We evaluated needs and unmet needs across the following domains: activities of daily living (ADLs), instrumental ADLs (IADLs), health management, and social. We calculated weighted estimates and compared sex differences using age-adjusted prevalence ratios. On average, female Veterans were younger, more were Non-Hispanic Black and unmarried. Females and males reported a similar prevalence of problems across all domains. However, compared to males, female Veterans had a lesser prevalence of missed appointments due to transportation (aPR 0.49; 95% CI: 0.26-0.92), housework unmet needs (aPR: 0.44; 95% CI: 0.20-0.97), and medication management unmet needs (aPR: 0.33; 95% CI: 0.11-0.95) but a higher prevalence of healthcare communication unmet needs (aPR: 2.40; 95% CI: 1.13-5.05) and monitoring health conditions unmet needs (aPR: 2.13, 95% CI: 1.08-4.20). Female Veterans' common experience of unmet needs in communicating with their healthcare teams could result in care that is less aligned with their preferences or needs. As the number of older female Veterans grows, these data and additional work to understand sex-specific unmet needs and ways to address them are essential to providing high-quality care for female Veterans.

Caregiver-specific quality measures for home- and community-based services: Environmental scan and stakeholder priorities.

Although family caregivers are increasingly recognized for their essential role in helping vulnerable adults live in the community for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of home- and community-based services (HCBS). Our overall goal was to identify measurement gaps to guide monitoring and improve HCBS. Caregiver-specific measurement priorities were identified during a multi-level stakeholder engagement process that included 34 Veterans, 24 caregivers, and 39 facility leaders, clinicians, and staff across four VA healthcare systems. We mapped items from national quality measure sets for HCBS identified during an environmental scan onto the stakeholder-identified measurement priorities. Only 5 of 11 non-VA measure sets and three of four VA measure sets explicitly included caregiver-specific items that were aligned with or relevant to stakeholders' measurement priorities. Six of 14 stakeholder-identified priorities were not reflected in any measure sets, such as those that explicitly assess caregiver-reported experience with services that directly or indirectly support their role as caregivers within HCBS. Although family caregivers fulfill a critical role in helping adults with complex medical needs live independently for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of HCBS. Measures that acknowledge caregivers' roles and incorporate their priorities can help healthcare systems to better monitor and improve HCBS quality, thereby enabling Veterans to remain in the community as long as possible.

Comparing Unmet Service Needs Between Rural and Urban Family Caregivers of People Living With Alzheimer's Disease and Related Dementias: A Multisite Study.

BACKGROUND AND OBJECTIVES: The scarcity of resources and available caregiving services in rural areas in the United States has been well documented. However, less research has compared unmet service needs between caregivers of people with Alzheimer's disease and related dementias (ADRD) in rural versus urban areas. RESEARCH DESIGN AND METHODS: Using semistructured interviews guided by theories of health service use and dependent care, we interviewed 20 family caregivers residing in rural areas of Western North Carolina and 18 caregivers within the urban setting of Houston, Texas, and compared their unmet service needs and contextual factors that facilitate their service use. RESULTS: Thematic analyses revealed similar unmet service needs among rural and urban caregivers; however, the ways they approached and solved their challenges differed. Caregivers in rural areas wished for more information and caregiver support whereas urban caregivers looked for information they needed until they found the answers. Rural caregivers expressed guilt about using services because they felt they were limited and zero-sum whereas urban caregivers shared available resources so that other caregivers could use them as well. Unmet service needs for urban caregivers included more racially and ethnically specific services for people with ADRD in their ethnic-specific languages and foods while rural caregivers' cultural needs were not racially and ethnically specific but for more place-specific services. DISCUSSION AND IMPLICATIONS: Recommendations for rural caregivers included utilizing online and virtual opportunities and expanding their reach across the United States. For urban caregivers, increasing culturally tailored service options would likely increase access and use.

Preimplementation Evaluation of a Self-Directed Care Program in a Veterans Health Administration Regional Network: Protocol for a Mixed Methods Study.

BACKGROUND: The Veteran-Directed Care (VDC) program serves to assist veterans at risk of long-term institutional care to remain at home by providing funding to hire veteran-selected caregivers. VDC is operated through partnerships between Department of Veterans Affairs (VA) Medical Centers (VAMCs) and third-party Aging and Disability Network Agency providers. OBJECTIVE: We aim to identify facilitators, barriers, and adaptations in VDC implementation across 7 VAMCs in 1 region: Veterans Integrated Service Network (VISN) 8, which covers Florida, South Georgia, Puerto Rico, and the US Virgin Islands. We also attempted to understand leadership and stakeholder perspectives on VDC programs' reach and implementation and identify veterans served by VISN 8's VDC programs and describe their home- and community-based service use. Finally, we want to compare veterans served by VDC programs in VISN 8 to the veterans served in VDC programs across the VA. This information is intended to be used to identify strategies and propose recommendations to guide VDC program expansion in VISN 8. METHODS: The mixed methods study design encompasses electronically delivered surveys, semistructured interviews, and administrative data. It is guided by the Consolidated Framework for Implementation Research (CFIR version 2.0). Participants included the staff of VAMCs and partnering aging and disability network agencies across VISN 8, leadership at these VAMCs and VISN 8, veterans enrolled in VDC, and veterans who declined VDC enrollment and their caregivers. We interviewed selected VAMC site leaders in social work, Geriatrics and Extended Care, and the Caregiver Support Program. Each interviewee will be asked to complete a preinterview survey that includes information about their personal characteristics, experiences with the VDC program, and perceptions of program aspects according to the CFIR (version 2.0) framework. Participants will complete a semistructured interview that covers constructs relevant to the respondent and facilitators, barriers, and adaptations in VDC implementation at their site. RESULTS: We will calculate descriptive statistics including means, SDs, and percentages for survey responses. Facilitators, barriers, number of patients enrolled, and staffing will also be presented. Interviews will be analyzed using rapid qualitative techniques guided by CFIR domains and constructs. Findings from VISN 8 will be collated to identify strategies for VDC expansion. We will use administrative data to describe veterans served by the programs in VISN 8. CONCLUSIONS: The VA has prioritized VDC rollout nationwide and this study will inform these expansion efforts. The findings from this study will provide information about the experiences of the staff, leadership, veterans, and caregivers in the VDC program and identify program facilitators and barriers. These results may be used to improve program delivery, facilitate growth within VISN 8, and inform new program establishment at other sites nationwide as the VDC program expands. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57341.

Use of Caregiving Support Services Among Diverse Dementia Caregivers by Geographic Context.

BACKGROUND AND OBJECTIVES: Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether the use of at least one formal caregiving service-support groups, respite care, and training-differed by race/ethnicity and across metro and nonmetro areas; and (b) whether predisposing, enabling, and need characteristics influenced support service use by race/ethnicity. RESEARCH DESIGN AND METHODS: Data were analyzed from a sample of primary caregivers of care recipients aged 65 years or older with probable dementia (n = 482) in the 2017 National Health and Aging Trends Study and National Study of Caregiving. We calculated weighted prevalence estimates and then used the Hosmer-Lemeshow goodness of fit statistic to find the best-fitting logistic regression models. RESULTS: Among minority dementia caregivers, support service use was higher in metro than nonmetro areas (35% and 15%); the trend was reversed for non-Hispanic White caregivers (47% nonmetro and 29% metro). The best-fitting regression models included predisposing, enabling, and need factors for both minority and non-Hispanic White caregivers. Younger age and more disagreement within the family were consistently associated with more service use in both groups. Among minority caregivers, better caregiver and care recipient health were associated with using support services. Among non-Hispanic White caregivers, nonmetro geographic context and caregiving interfering with valued activities were associated with using support services. DISCUSSION AND IMPLICATIONS: Geographic context differently affected support service use and the influence of predisposing, enabling, and need factors varied by race/ethnicity.

Phenotyping Depression After Mild Traumatic Brain Injury: Evaluating the Impact of Multiple Injury, Gender, and Injury Context.

The chronic mental health consequences of mild traumatic brain injury (TBI) are a leading cause of disability. This is surprising given the expectation of significant recovery after mild TBI, which suggests that other injury-related factors may contribute to long-term adverse outcomes. The objective of this study was to determine how number of prior injuries, gender, and environment/context of injury may contribute to depressive symptoms after mild TBI among deployed United States service members and veterans (SMVs). Data from the Long-term Impact of Military-Relevant Brain Injury Consortium Prospective Longitudinal Study was used to assess TBI injury characteristics and depression scores previously measured on the Patient Health Questionnaire-9 (PHQ-9) among a sample of 1456 deployed SMVs. Clinical diagnosis of mild TBI was defined via a multi-step process centered on a structured face-to-face interview. Logistical and linear regressions stratified by gender and environment of injury were used to model depressive symptoms controlling for sociodemographic and combat deployment covariates. Relative to controls with no history of mild TBI (n = 280), the odds ratios (OR) for moderate/severe depression (PHQ-9 ≥ 10) were higher for SMVs with one mild TBI (n = 358) OR: 1.62 (95% confidence interval [CI] 1.09-2.40, p = 0.016) and two or more mild TBIs (n = 818) OR: 1.84 (95% CI 1.31-2.59, p < 0.001). Risk differences across groups were assessed in stratified linear models, which found that depression symptoms were elevated in those with a history of multiple mild TBIs compared with those who had a single mild TBI (p < 0.001). Combat deployment-related injuries were also associated with higher depression scores than injuries occurring in non-combat or civilian settings (p < 0.001). Increased rates of depression after mild TBI persisted in the absence of post-traumatic stress disorder. Both men and women SMVs separately exhibited significantly increased depressive symptom scores if they had had combat-related mild TBI. These results suggest that contextual information, gender, and prior injury history may influence long-term mental health outcomes among SMVs with mild TBI exposure.

Association between low health literacy and adverse health behaviors in North Carolina, 2016.

Introduction: Health literacy (HL) is an urgent public health challenge facing the U.S. HL is a critical factor in health inequities and exacerbates underlying social determinants of health. Purpose: This study assesses the association between low HL (LHL) and adverse health behaviors, which contribute to poor health. Methods: Researchers used North Carolina's 2016 Behavioral Risk Factor Surveillance System data, namely, the Health Literacy optional module which asks respondents to rate how difficult it is for them to get health-related advice or to understand medical information (verbal or written). Health behaviors analyzed were excessive alcohol consumption, lack of adequate exercise and sleep, and irregular medical and dental check-ups. The sample was divided into four age categories (18-49, 50-64, and 65-75, and 76 and older) for statistical comparisons. Stata 15 and a user-written Stata command, - psacalc-, were used to examine the relationships by addressing omitted variable bias in OLS regressions. Results: Findings indicate that LHL has a direct robust relationship with not exercising, inadequate sleep, irregular health and dental checkup, and health screenings across different age groups. Among women, LHL is associated with getting a Pap test in 3 years as opposed to more than 3 years. Implications: The adverse behaviors can explain the mechanisms underlying the link between LHL and adverse health outcomes. Further research on the causal relationship between LHL and adverse health behaviors using longitudinal data on a broader geographic region is warranted.

Measuring the unmet needs of American military Veterans and their caregivers: Survey protocol of the HERO CARE survey.

BACKGROUND: Empowering Veterans to age in place is a Department of Veterans Affairs priority. Family or unpaid caregivers play an important role in supporting Veterans to achieve this goal. Effectively meeting the needs of Veterans and caregivers requires identifying unmet needs and relevant gaps in resources to address those needs. METHODS: Using a modified Socio-Ecological Model, we developed a prospective longitudinal panel design survey. We randomly selected 20,000 community-dwelling Veterans enrolled in the Veterans Health Administration (VHA), across five VHA sites. We oversampled Veterans with a higher predicted 2-year long-term institutional care (LTIC) risk. Veterans were mailed a packet containing a Veteran survey and a caregiver survey, to be answered by their caregiver if they had one. The Veteran survey assessed the following health-related domains: physical, mental, social determinants of health, and caregiver assistance. Caregivers completed questions regarding their demographic factors, caregiving activities, impact of caregiving, use of VA and non-VA services, and caregiver support resources. Follow-up surveys will be repeated twice at 12-month intervals for the same respondents. This article describes the HERO CARE survey protocol, content, and response rates. RESULTS: We received responses from 8,056 Veterans and 3,579 caregivers between July 2021 and January 2022, with 95.6% being received via mail. Veteran respondents were mostly males (96.5%), over 65 years of age (94.9%), married (55.0%), Non-Hispanic White (75.2%), and residing in urban areas (80.7%). CONCLUSIONS: This longitudinal survey is unique in its comprehensive assessment of domains relevant to older Veterans stratified by LTIC risk and their caregivers, focusing on social determinants, caregiver support, and the use of caregiver support resources. Survey data will be linked to Centers for Medicare & Medicaid Services and VA data. The results of this study will inform better planning of non-institutional care services and policy for Veterans and their caregivers.

Feasibility and Efficacy of Life Review Delivered by Virtually-Trained Family Caregivers.

BACKGROUND: Due to the high prevalence of depressive symptoms and Alzheimer's disease and related dementias in older Americans (≥65 years), we developed a six-week depression intervention, Caregiver-Provided Life Review (C-PLR) for care recipients (CRs) with early-stage dementia and mild depression. OBJECTIVE: The objective of the study was to examine the feasibility and efficacy of C-PLR delivered by virtually-trained caregivers (CGs) on CRs who live with dementia and depression in community and long-term care settings (N = 25 CG-CR dyads). METHODS: We used fidelity scores as a measure of CG's feasibility to provide C-PLR. We collected the pre- and post-measures on CRs' depression (primary outcome), life satisfaction, CGs' burden, positive aspects of caregiving, and CG-CR relationship quality (secondary outcomes) and compared them using paired t-tests. We evaluated if the effect differed by race/ethnicity, residential setting, or living alone. RESULTS: The average fidelity check-in score was 14.8±0.78 indicating high feasibility. CGs were 52 years old (mean), 88% female, 64% working, 72% college-educated, and 72% in good-excellent health. CRs were 81 years old (mean), 84% female, and 56% in poor-fair health. CRs' depression significantly improved (p < 0.001), and this effect was found in CRs who were Asian (p = 0.017), White (p = 0.040), community-dwelling (p < 0.001), lived alone (p = 0.045), or with others (p = 0.002). CONCLUSION: This study demonstrated that the C-PLR can be successfully taught to CGs virtually and is effective in reducing CR's depressive symptoms. C-PLR could be implemented more broadly to improve symptoms among CRs in community and residential settings, as well as among a diverse population of CRs.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Getting back to normal? Identity and role disruptions among adults with Long COVID.

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long-haulers' experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March-April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

Dementia Caregiving Experiences and Health Across Geographic Contexts by Race and Ethnicity.

OBJECTIVES: Few studies have examined how the intersectionality of geographic context and race/ethnicity influences dementia caregiving. Our objectives were to determine whether caregiver experiences and health (a) differed across metro and nonmetro areas and (b) differed by caregiver race/ethnicity and geography. METHODS: We used data from the 2017 National Health and Aging Trends Study and National Study of Caregiving. The sample included caregivers (n = 808) of care recipients ages 65 and older with "probable" dementia (n = 482). The geographic context was defined as the care recipient's residence in metro or nonmetro counties. Outcomes included caregiving experiences (care situation, burden, and gains) and health (self-rated anxiety, depression symptoms, and chronic health conditions). RESULTS: Bivariate analyses indicated that nonmetro dementia caregivers were less racially/ethnically diverse (82.7% White, non-Hispanic) and more were spouses/partners (20.2%) than their metro counterparts (66.6% White, non-Hispanic; 13.3% spouses/partners). Among racial/ethnic minority dementia caregivers, nonmetro context was associated with more chronic conditions (p < .01), providing less care (p < .01), and not coresiding with care recipients (p < .001). Multivariate analyses demonstrated that nonmetro minority dementia caregivers had 3.11 times higher odds (95% confidence interval [CI] = 1.11-9.00) of reporting anxiety in comparison to metro minority dementia caregivers. DISCUSSION: Geographic context shapes dementia caregiving experiences and caregiver health differently across racial/ethnic groups. Findings are consistent with previous studies that have shown that feelings of uncertainty, helplessness, guilt, and distress are more prevalent among people providing caregiving from a distance. Despite higher rates of dementia and dementia-related mortality in nonmetro areas, findings suggest both positive and negative aspects of caregiving among White and racial/ethnic minority caregivers.

Association between specific unmet functional needs and desire to institutionalize among caregivers of older veterans.

OBJECTIVES: To evaluate the associations between specific functional needs of older Veterans and the desire to institutionalize (DTI) among their caregivers. METHODS: Cross-sectional multivariable logistic regression analysis of 3579 Hero Care survey responses from caregivers of Veterans at five US sites from July to December 2021. Unmet needs were areas in which the caregiver reported the Veteran needed a little more or a lot more help. Caregiver DTI was defined as the caregiver reporting that they had discussed, considered, or taken steps toward a nursing home or assisted living placement for the Veteran or that they felt the Veteran would be better off in such a setting or they were likely to move the Veteran to another living arrangement. RESULTS: Caregivers were largely white, retired, females with an average age of 71 and with some college education who spent an average of 8-9 h per day 6 days a week caring for a Veteran spouse. There was evidence of associations between the following needs and a DTI: managing incontinence, using the telephone, transportation, and arranging services in the home such as visiting nurses, home care aides, or meals on wheels. Unmet functional needs in other selected domains were not associated with the DTI. CONCLUSION: Among caregivers of older Veterans, a need for more assistance managing incontinence, telephone use, transportation, and arranging in-home services were associated with the DTI. These may represent functional markers of important clinical determinants for institutionalization as well as potential targets for intervention to reduce caregiver DTI, such as programs that provide more caregiver or Veteran support in the home to meet these needs and reduce caregiver burden.

Flu Vaccine Uptake in Caregivers and Noncaregivers: Implications for Policy and Practice.

INTRODUCTION: Caregivers are a critical and highly used health care resource. Caregivers may experience adverse health outcomes and practice less self-care, including obtaining vaccinations, while serving in their roles. Influenza (flu) is a common infectious disease responsible for millions of doctor visits, hospitalizations, and approximately 43,000 US deaths annually that can largely be prevented by receiving seasonal vaccinations. We aimed to estimate and compare the prevalence of flu vaccination among caregivers and noncaregivers. We hypothesized that caregivers would have a lower prevalence of flu vaccination than noncaregivers and that sociodemographic variables, health-related variables, and caregiving-specific characteristics would be associated with vaccine uptake. METHODS: We analyzed Behavioral Risk Factor Surveillance System data from 2016 through 2018 on 154,170 respondents from 27 US states and the District of Columbia. We used bivariate analysis to estimate the difference in flu vaccination uptake among caregivers and noncaregivers and logistic regression to estimate differences after adjusting for individuals' characteristics. RESULTS: Logistic regression indicated no significant difference in flu vaccine uptake between caregivers and noncaregivers. Caregiving characteristics such as years in a caregiver role, weekly time spent caregiving, relationship to care recipient, and recipient's risk for flu complications were also nonsignificant. Sociodemographic factors such as marital status, income, health insurance coverage, and race had a significant impact on flu vaccine uptake. CONCLUSION: Although no significant differences in flu vaccine uptake were found between caregivers and noncaregivers, flu vaccine coverage remains low in both groups. Evidence-based programs and policies to improve vaccine coverage in the caregiver and general populations remains a public health priority.