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Background and Objectives: Home- and community-based services (HCBS) are underutilized, despite offering significant health benefits to both care recipients and caregivers. Drawing upon Andersen's extended behavioral model of health services use, we examined individual- and county-level factors influencing HCBS utilization for dementia care in rural Appalachia., Research Design and Methods: We analyzed data from telephone interviews with 123 dementia family caregivers in rural Appalachian counties (Mage = 64.7, SDage = 12.2). Multilevel analyses were conducted to examine the effects of individual-level and county-level factors on the use of home-based services (home healthcare and personal care services) as well as community-based services (adult day care and transportation services)., Results: Results indicated that caregivers' receipt of informal support from family or friends was associated with more use of home-based services (B = 0.42, p = .003). Conversely, longer travel times to service providers were linked to use of fewer community-based services (B = -0.21, p < .001). Residing in counties with more home health agencies was associated with higher utilization of home-based services (B = 0.41, p = .046). However, higher county tax expenditures for HCBS were not linked to home-based or community-based service use., Discussion and Implications: Findings suggest that informal support in caring for the person living with dementia enables HCBS use in rural Appalachia. In contrast, limited geographic accessibility and service availability can impede HCBS use in rural regions. Policymakers are urged to allocate direct public funding to service providers to expand service availability in underresourced rural regions., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Behavioral expressions of dementia are often stressful for family caregivers to manage as they strive to ensure their relative's needs are met. Guided by Lazarus and Folkman's Transactional Model of Stress and Coping, we identified specific behaviors that disrupt daily routines and challenge the achievement of caregiving goals, and the approaches and strategies caregivers employ to address them., Research Design and Methods: We conducted semistructured interviews with 30 family caregivers in rural Appalachia caring for a relative living with dementia. Analysis involved use of open and focused coding processes to identify the ways caregivers managed behaviors and bar graphs to examine management approaches relative to categories of behaviors and caregiver demographic and emotional well-being variables., Results: Analyses revealed 10 types of behavioral expressions of dementia associated with confusion, irritability, and resistance to engaging in necessary activities of daily living. Caregiver approaches to managing behaviors included gentle persuasion, being harsh by yelling or threatening, being persistent in expecting the person with dementia to complete the tasks at hand, disengaging by postponing the activity, and employing a combination of strategies. Approaches differed across types of behavior and caregiver demographics and had varying effects on caregiver well-being., Discussion and Implications: Uncovering specific behaviors family caregivers of persons living with dementia found bothersome, caregivers' adaptive strategies for managing behaviors, and the impact of those approaches provides new information to inform training on effective dementia caregiving practices and development of targeted intervention programs for dementia care., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Although the benefits of home- and community-based services (HCBS) to support the needs of older adults are well-established, researchers have persistently reported service underutilization by dementia caregivers to assist them with their caregiving responsibilities. Using the Health Behavior Model and Conservation of Resources Theory, the aim of the current study was to understand what barriers prevent caregivers from using HCBS and the toll it takes on them. Utilizing a sample of 122 rural family caregivers (74% female, 87% white, M age  = 64.86 years) of persons living with dementia (PLwD), simultaneous ordinary least square regressions were employed to understand the association between barriers to service use and the current use of support services and personal services, and concurrently on caregiver role overload. Financial barriers, caregiver's reluctance to use services, and their capability of seeking services were associated with lower use of support services. After controlling for need and enabling factors, caregivers who used more support services, and those who reported system complexities to using support services experienced higher role overload. Financial barriers, system complexities, and caregivers' reluctance also affected the use of personal care services. Despite the use of personal services, caregivers of PLwD with greater needs and fewer enabling factors experienced higher role overload. Study findings suggest that reducing system complexities of HCBS and improving prevention and intervention efforts to facilitate caregivers' awareness of HCBS are needed to address lack of service use and reduce caregiver overload., (© 2022. Society for Prevention Research.)

Objective: The purpose of this investigation was to understand the dynamics among dementia caregiving, vigilance, and home and community-based service use., Methods: This paper is derived from a larger, mixed-methods study on caregiving. We used a descriptive qualitative approach to analyze interview data of 30 family caregivers of relatives with dementia., Results: We found five domains of vigilance in which caregivers felt "on duty": ensuring attentiveness, ensuring safety, ensuring resources, ensuring healthcare, and ensuring closeness. Formal service use did not necessarily give caregivers relief from vigilance, with the language of risk often employed by caregivers., Conclusion: Because service use could contribute to feelings of vigilance, rather than give caregivers a break from a sense of watchfulness, these findings support calls for dementia-specific training for service providers. In future caregiving research, the relationship between vigilance, caregiver distress, and role captivity should be explored.

Despite changes in the structure of contemporary families, little is known about extended family members-siblings, grandchildren, nieces/nephews, stepkin-who are primary caregivers for a relative living with dementia. Information about these caregivers is needed to help ensure their needs are understood by providers in health care and social service settings. The focus of this research was on the care situations of extended family caregivers and the impact of caregiving on their health and well-being. In Study 1, data from the National Study of Caregiving were used to describe the experiences of 107 extended family caregivers. In Study 2, case study techniques elicited additional information about the experiences of 10 extended family caregivers. Collectively, these caregivers provide care with little or no formal support and occasional help from a small informal network. Caregiving affected their physical and emotional health, depending on the strength of the relationship between the caregiver and the person living with dementia and the type of care provided. Findings contribute new knowledge about extended family caregivers and highlight the important role extended family dementia caregivers play and the challenges they face.

Objectives: This study explored interpersonal aspects of coping with mild cognitive impairment (MCI), focusing on how shared illness representations between persons with MCI (PwMCI) and their care partners (CPs) are associated with CP perceived burden. Method: Longitudinal data from a purposive sample of 69 MCI care dyads were analyzed using descriptive statistics, t -tests, intraclass correlations, and regression analyses. Results: CP perceived their PwMCI's deficits in MCI-related functions as more negative than PwMCI rated themselves, but the extent of the discrepancy varied across cognitive and behavioral abilities. The discrepancy in dyadic appraisal of PwMCI functioning was associated significantly with CP burden. Conclusion: The findings highlight the value of shared PwMCI and CP perspectives on cognitive functioning for MCI management and psychological adjustment.

Objective: The objective of this study was to assess family caregivers' primary appraisal of stressors related to COVID-19 stay-at-home orders, secondary appraisal of resources and support availability, and use of coping strategies as predictors of perceived role overload during the stay-at-home phase of the pandemic., Method: Telephone interviews with 53 family caregivers of persons with dementia from rural Virginia 2 weeks after enactment of the governor's stay-at-home order using structured and open-ended questions were conducted., Results: Caregivers who were more concerned about the COVID-19 pandemic were at greater odds of experiencing high role overload than those who recognized positive aspects of the pandemic, as were those who received insufficient support from family and friends., Discussion: Use of the transactional model of stress responses yielded important insights about families coping with dementia. Caregivers' perceptions of the pandemic's impact varied, with differential effects on their well-being., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia., Methods: This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment., Results: Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65)., Conclusions: Findings have implications for support programs that help build personal mastery., (© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: With over one-fifth of the world's older population, shrinking family size and increasing number of women in the workforce, elder care is a growing challenge for families in mainland China. This study explored the moderating effect of working status and gender on caregiving time and depressive symptoms among adult children caregivers in mainland China. Method: Participants were 660 adult children caregivers from a nationally representative sample of individuals aged 45 + ( N  = 13,204) who participated in the China Health and Retirement Longitudinal Study (CHARLS) Wave 2 (2013). Multiple linear regression was used to analyze the direct effect of caregiving time and the moderating effects of working status and gender on symptoms of depression among caregivers. Results: Significant main effect between caregiving time and depressive symptoms was found controlling for demographic covariates. The three-way interaction between working status, gender and caregiving time was also significant. Working status and gender moderate the effect of caregiving time on depressive symptoms: among employed men and women caregivers, spending more hours providing care predicted fewer depression symptoms. Unemployed men caregivers who spent more hours providing care showed highest level of depressive symptoms. Conclusion: The relationship between caregiving time and depressive symptoms was moderated by working status and gender. Future research is needed to explore factors that influence changes in caregivers' health and well-being over time.

African American families' experiences with mild cognitive impairment (MCI) have received little attention in the research literature. Guided by the life-course perspective, we analyzed qualitative interview data from members of 27 African American families including the person with MCI (PwMCI), a relative or friend who was highly involved in the PwMCI's daily life, and if available, a relative or friend who had at least monthly contact with the PwMCI. Findings uncovered variability in families' MCI awareness, assessment, and need for role changes; the importance of reaching out to trusted others; and honoring PwMCI's care preferences (e.g., who should provide care). Families held varying beliefs about engaging outside support; some families insisted on keeping all care within the family while others were open to the use of external services. We showcase how diagnosis acceptance and family decision-making are at the heart of how African American families respond to MCI.

Introduction: An emerging perspective of dyadic coping with chronic illness argues that concordance in the appraisal of illness is crucial for collaborative attempts at seeking information, making treatment decisions, and planning for long-term management of the illness and psychological and physical adjustments of both the care provider and care recipient. The present study examined whether persons with mild cognitive impairment (PwMCIs) and their family care partners (CPs) exhibited concordance in their awareness of deficits in the PwMCIs. Furthermore, this study explored the differences in concordance based on the relationship of the informant to the PwMCI, specifically spouse CP (SCP) versus adult child CP (ACCP)., Method: PwMCI-SCP pairs (n = 55) and PwMCI-ACCP (n = 14) pairs provided reports on their awareness of PwMCI's functional and cognitive deficits. CPs also reported their knowledge about dementia., Results: SCPs, but not ACCPs, reported greater deficits in everyday activity than PwMCIs' self-reports. Additionally, compared to SCPs, ACCPs had more accurate knowledge about dementia, and their perception of PwMCI deficits corresponded more closely to PwMCI's self-perception., Discussion: These findings demonstrate that concordance in awareness of PwMCI deficits varies across functional and cognitive areas and types of dyads. The results also highlight the importance of mild cognitive impairment-related education and support programs for care dyads to strengthen concordance, which is likely an important underpinning for effective coping as the illness progresses. (PsycINFO Database Record, ((c) 2016 APA, all rights reserved).)

Demographic and social trends lead to a variety of micro-level and internal structural contexts that influence caregiving in families with older members. The results of macro-level changes have received little focused attention in the aging literature, where much of the caregiving research has addressed issues within the context of traditional family structure. Yet the conventional nuclear family model is increasingly uncommon as new, pluralistic models of family life are emerging in contemporary society. The majority of elder care is provided by relatives, albeit with varying patterns of involvement and responsibility across family structures. Both conventional and pluralistic families face challenges in meeting the care needs of their oldest members, leaving some older adults at risk of having unmet needs. Additional research on family risk and resilience related to the care of older relatives is warranted, particularly with respect to pluralistic models of family life.

Mild cognitive impairment (MCI) refers to non-normative changes in memory and cognition. While researchers are beginning to address the social consequences of MCI, no investigations have tracked how married couples respond to MCI over time as symptoms stabilize or become more severe. Guided by life course and symbolic interactionist tenets, we examined how 40 older couples in the United States adjusted to daily life after one partner was diagnosed with MCI and how their marital roles and relationship changed over a three- to four-year period. Data were collected from 2004 through 2010. All couples experienced an initial period of transition in coping with MCI where they made adjustments in their daily lives and interactions. Following this adjustment period, four trajectories of care emerged depending on the extent of the older adult's decline and the spouse's response. We conclude that changes associated with MCI affect role identity and have consequences for spousal relationships.

Objectives: We examined subjective perceptions of memory loss among older adults with mild cognitive impairment (MCI) and two other relatives in order to improve understanding of family coping. We also investigated contextual conditions associated with perceptions of family dynamics and relationships., Method: We conducted interviews with 56 family triads (the elder with MCI, the primary care partner, and a secondary care partner). Guided by Pearlin and colleagues' caregiving stress process framework, questions addressed perceptions of memory changes and interpretation of the effects of MCI on family interaction patterns., Results: Analyses of family triads revealed four degrees of the extent to which family members similarly acknowledged elders' MCI. The acknowledgment groups differed on history of family dynamics, experience with dementia, and perceived extent of memory change in the elder. Families characterized by full acknowledgment coped better with perceived changes in the elder's functioning than those in which members' perceptions of MCI were incongruent., Discussion: Pursuing family-level data on responses to MCI uncovered more nuanced reactions, often differing across triad members, than individual-based research has found. Family perceptions about changes in elders' memory have important implications for within-family interactions and support that can help families cope successfully with MCI.

Purpose: We examined characteristics, responses, and psychological well-being of care partners who support and assist older adults recently diagnosed with mild cognitive impairment (MCI)., Design and Methods: Based on a sample of 106 care partners of community residents diagnosed with MCI at memory clinics, we conducted face-to-face interviews including scales and open-ended questions. Measures tapped elements of the caregiver stress process model advanced by Pearlin and associates (1990, Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594), including background characteristics, knowledge and attitude resources, stressors, strains, and protective conditions. The outcome was psychological well-being as indexed by depressive symptoms., Results: Care partners' depressive symptoms were higher in the context of poorer health, lower perceived importance of religion, less knowledge about dementia, being more bothered by the older adult's MCI symptoms, having a lower sense of environmental mastery, more perceived burden, more frequent use of coping strategies, and more social support. Narratives revealed multiple dimensions of stress, strain, and frustration, regardless of the level of depressive symptoms., Implications: Assisting a relative with MCI presents new and complex challenges, even though it is an early caregiving role. Care partners likely would benefit from strategies aimed at reducing self-blame, enhancing coping skills, sustaining their sense of mastery, managing their health, seeking and accepting respite, and communicating effectively with the person with MCI and significant others.

Data from Virginia Adult Protective Services (APS) case files of 95 abused women aged 60 years and older were assessed to establish demographic trends; ability to care for self; type, pattern, and place of abuse; information on witnesses and alleged offenders; and case resolution and outcomes. The most common types of mistreatment reported were neglect, exploitation, and physical abuse. The women typically had several functional limitations and were dependent upon their family members for care. Most cases were not prosecuted, and the majority of women remain at risk for further abuse. Implications of these data for future research and practice are discussed.

Objectives Examinations of cultural variations in caregiving experiences and practices tend to focus on racially and ethnically diverse family caregivers. We extended this research by exploring the role of place-based cultural constructs on care decisions of family caregivers for persons living with dementia in rural Appalachia whose experiences and backgrounds dwell outside the lines of dominant culture. Methods Guided by our sociocultural conceptual model of service use and a descriptive qualitative study design, we conducted in-depth interviews with 30 caregivers for persons living with dementia to understand how predisposing and enabling factors influence caregiving decisions, including the use of services to care for persons living with dementia. Results Three predisposing factors reflecting the culture of rural Appalachian counties in Virginia (reasons for becoming a caregiver, previous caregiving experience, and deference to the person living with dementia) shaped decisions about caregiving responsibilities and service use. Three place-based enabling factors (a personal sense of belonging, knowledge of services, and family support for service use) played an important role in facilitating access to services. Discussion Findings revealed subtle variation across caregivers in this study and in comparison, to caregivers' experiences more generally. We interpret these variations in light of culturally influenced attitudes, family norms, and sources of information about formal services. Place-based cultural experience influenced dementia family caregivers' behaviors and choices regarding formal service use, suggesting that investigators should pay more attention to cultural influences in future caregiving research. [ABSTRACT FROM AUTHOR]

Serving in dual caregiving roles presents challenges and has consequences for caregivers' physical and mental health. Forty-six dual caregivers in rural southwest Virginia participated in one semi-structured telephone interview pre-pandemic. Of these caregivers, nine dual caregivers of multiple older adults (MOA) and six caregivers of multiple generations (MG) participated in two telephone interviews during the COVID-19 pandemic. Pre-pandemic health, stress, and support data were used to compare dual caregivers of MOA and MG; differences were minimal. Responses to interviews conducted during the pandemic highlighted the effects of social restrictions on MOA and MG caregivers, revealing five themes (1) Increased isolation, (2) Increased need for vigilance, (3) Negative impact on mental health, (4) Tendency to "do it all," and (5) Increased informal help. MOA and MG caregivers differed on managing care responsibilities and ensuring the health of care recipients. In general, dual caregivers experienced decreased mental health, increased social isolation, and increased caregiving responsibilities. Antecedents of the pandemic experiences differentiated MOA and MG caregiver. Findings suggest that programs and services should target dual caregivers' unique needs. [ABSTRACT FROM AUTHOR]

Background and Objectives Residents of rural Appalachia tend to experience poorer health and greater economic distress than rural dwellers elsewhere in the United States. Although family is the first line of support for older adults needing care, it is unclear whether dementia caregivers in Appalachia assume these care responsibilities because of strong informal networks that support them in their caregiving role, underresourced formal services for persons with dementia, or culture-based reluctance to accept help from outsiders. This research examines how rural residents of Appalachia manage the care of relatives with dementia. Research Design and Methods The study was grounded in the Andersen Behavioral Model, supplemented with culturally relevant variables. Family caregivers from rural Appalachian counties in Virginia caring for community-dwelling relatives with dementia participated in a structured phone interview (N = 163). Generalized structural equation models were estimated, with predisposing, need, and enabling variables as predictors. Use of support services (e.g. meal delivery) and personal services (e.g. home health nurse) by family caregivers to care for the person with dementia were the dependent variables, and caregiver's rural community identity and attitude toward services were moderators. Results Approximately half the sample utilized at least one support service and one personal service. Predisposing and need factors predicted the use of support services, whereas predisposing, need, and enabling factors predicted personal services. Caregivers who strongly identified with their cultural roots were less likely to use personal services unless they held a generally positive view of formal services. Discussion and Implications Although the extent of needs and the caregiver's economic situation were essential influences on formal service utilization, the main drivers were the caregiver's identification with rural Appalachian culture and attitude toward services. Findings point to within-group heterogeneity that requires differential approaches to delivery of community-based services accounting for varying attitudes, preferences, and family resources. [ABSTRACT FROM AUTHOR]

Objective: Despite overall improvements in the U.S. health care, older adults living in rural counties, such as Appalachian Virginia, continue to be underserved. Method: Multinomial regression models, including both individual and county data from 503 older adults aged 65+, were used to examine factors associated with informal and formal care use. Results: Older adults with stronger filial beliefs and less positive attitudes toward community services preferred informal help. If the county had more formal care services, however, older adults were more likely to use them, regardless of their filial beliefs. Disparities based on gender were observed, in that women who lived in counties with a higher percentage of older adults below the poverty line were more likely to receive no help than men. Discussion: Developing effective service promotion tactics, destigmatizing community services, and targeting services and support, especially to women, could decrease health disparities in rural Appalachia and similar geographic areas. [ABSTRACT FROM AUTHOR]

The original article can be found online at https://doi.org/10.1007/s11121-022-01479-w. B Correction to: Prevention Science b https://doi.org/10.1007/s11121-022-01479-w In Table 2 of this article, the footnote "*** I p i < 0.1" should have been "+ I p i < 0.1". [Extracted from the article]

Purpose of the Study: The purpose of this study was to identify different types of clients who use home and community-based services. Design and Methods: Enrollment characteristics of 76 clients at risk of nursing home placement and Medicaid spend-down who were enrolled in the Virginia Community Living Program were analyzed. Two-step cluster analysis identified 4 groups of service users. Results: Enabling resources (caregiver relationship to participant, participant living arrangement, and length of time caregiver provided assistance to participant) and disability type (physical, cognitive, traumatic brain injury, or other) differentiated the client groups. Groups differed on average service cost per day and likelihood of nursing home placement if services were not provided. Implications: Findings point to the value of having practitioners assist vulnerable clients in tailoring services to meet different care needs and the need for refining policies guiding home and community-based care. [ABSTRACT FROM AUTHOR]

Elder abuse is a growing societal concern, affecting at least 1 in 10 older Americans. Researchers and practitioners alike consistently assert that a dramatic discrepancy exists between the prevalence rates of elder abuse and the number of elder abuse cases reported. As a field of study, recognition and understanding of elder abuse is still emerging. Comparing findings of a small, but growing, body of literature on perceived and substantiated cases of elder abuse is challenging because there is no uniform term or agreed-upon definition used among state governments, researchers, health care and service providers, and advocates. This article summarizes current understanding of elder abuse, including what constitutes elder abuse, risk factors for elder abuse, perpetrators of elder abuse, and outcomes of elder abuse. Issues associated with the detection of elder abuse and intervention strategies for victims of abuse are addressed. In the final section, potential roles and contributions of psychologists for advancing elder abuse research, professional practice, and policy development are highlighted. [ABSTRACT FROM AUTHOR]

The article presents a comparison of the roles that the governments of Sweden and the United States play in providing community support services, including services related to nutrition, transportation and activities of daily living, for older citizens. A discussion of differences in policy approaches for addressing quality of life issues of older citizens which are seen in the U.S. and Sweden is presented.

Through a statewide telephone survey of 819 beneficiaries (or their proxies), we collected data regarding client and aide demographics, as well as clients' satisfaction, outcomes, perspectives on staff performance, and complaints associated with home-based personal care services provided under the Virginia Medicaid Elderly and Disabled (E&D) waiver. Most respondents indicated that services improved their lives, and they were generally satisfied. Opportunities for improvement exist, however, especially related to the amount of time spent with the client, the need for training, and communication issues. Ongoing use of client/family caregiver surveys is warranted to allow continued monitoring of service provision. [ABSTRACT FROM AUTHOR]

Twenty-five interviews were conducted (18 clients and seven family caregivers) to identify the consumer's most important dimensions of personal care provision. Respondents were generally satisfied with their current aides, but there are unmet needs, including care at additional times of the day or week, and problems, particularly aides arriving late. The most common problems reported from past experience with prior aides included aides who arrived late, did not show up, or who were viewed as "'lazy." Eight important dimensions were identified, including having aides who are reliable, honest, easy to be around, and who possess a good knowledge base. [ABSTRACT FROM AUTHOR]

This study examines the effects of daily primary objective stressors (behavioral problems exhibited by persons with mild cognitive impairment) and subjective stressors (unpleasant marital interactions) on the diurnal cortisol pattern and the diurnal pattern of salivary alpha-amylase (sAA) of spousal care partners. Thirty spouse care partners (age 59-85 years) participated in a 7-day diary study and submitted saliva samples on 4 consecutive study days, totaling 406 valid samples. Results from multilevel models revealed that daily objective stressors were associated with elevated cortisol levels and a flatter slope but were not associated with sAA activity. Conversely, unpleasant marital interactions were associated with flatter 5AA slopes but not associated with cortisol activity. Furthermore, daily levels of sAA moderated variations in cortisol in the presence of a primary objective stressor. The utility of our research has implications for advancing scientific understanding of biosocial processes and the development of stress prevention and intervention strategies. [ABSTRACT FROM AUTHOR]