Dementia Care in Rural Appalachia: Multilevel Analysis of Individual and County-level Factors.

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 health care 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 were associated with more use of home-based services (B = 0.42, p = 0.003). 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 = 0.046). 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 under-resourced rural regions.

Family Caregivers' Management of Behavioral Expressions of Dementia.

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.

Effects of the COVID-19 pandemic on stress, coping, and well-being among adults with histories of child maltreatment.

A number of studies now confirm that the COVID-19 pandemic has increased and exacerbated mental health problems in the general population. Previous quantitative studies have found similar effects on mental health symptoms among adults with histories of childhood adversity; however, qualitative research is needed to provide a more in-depth understanding of pandemic-related experiences among this vulnerable population. Using semistructured qualitative interviews, we explored perceptions of adults with histories of child maltreatment and neglect to better understand the overall impact of the pandemic on their mental health, reported changes in stress and alcohol use, and reported coping strategies during the first year of the pandemic (N = 40). Approximately half of participants reported that the pandemic had greatly (negatively) impacted their life, relationships, and well-being. Contributing stressors included being fearful of getting sick, navigating work changes, and experiencing economic and housing hardships, grief and loss, and social isolation. Fewer than half of the sample reported more stress (46%), whereas a third (33%) indicated no changes to stress, and 10% had reduced stress. The majority (80%) indicated no changes in their alcohol use. Most participants reported they used positive coping strategies during the pandemic. Three primary themes emerged related to participants' perceptions of getting through difficult times: seeking outside support, engaging in positive reframing, and drawing on internal strength and resources. Findings can guide prevention strategies that strengthen social support and foster resilience among vulnerable populations of adults with histories of childhood maltreatment. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Global Approaches to Primary, Secondary, and Tertiary Elder Abuse Prevention: A Scoping Review.

Public health professionals use a three-pronged approach to address broad-reaching issues of societal concern: primary prevention, secondary prevention, and tertiary prevention. Applying this framework to the study of elder abuse, the purpose of this review is to describe the status of elder abuse prevention research on a global scale. Elder abuse prevention articles published between 2015 and 2021 were identified through electronic bibliographic searches (PubMed, Medline, CINAHL, APA PsycINFO, and AgeLine). After removing articles based on inclusion and exclusion criteria, articles were sorted into the three main prevention types and further divided into subcategories for a more in-depth review. Most of the studies identified were conducted in North America (n = 42). Of the 72 articles identified, 13 articles focused on primary prevention (agism, education, and intervention), 35 articles focused on secondary prevention (developing and evaluating screening tools, identifying and reporting abuse, and barriers to detecting and reporting abuse), and 21 focused on tertiary prevention (professional response to cases of abuse, intervention methods, and impact of policy). Collectively, findings bring greater understanding of elder abuse as a public health problem and identify ways of addressing the complexities of elder abuse. Several gaps were identified in the elder abuse prevention literature including the need for global research that includes older adults as stakeholders, evidence-based education and intervention programs, and cultural sensitive and valid tools to identify elder abuse.

Vigilance, risk, and service use among caregivers of people living with dementia.

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.

Barriers to Service Use Among Dementia Family Caregivers in Rural Appalachia: Implications for Reducing Caregiver Overload.

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, Mage = 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.

Financial Fraud of Older Adults During the Early Months of the COVID-19 Pandemic.

BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) created a "perfect storm" for financial fraud targeting older adults. Guided by the Contextual Theory of Elder Abuse, we focused on individual and systemic contexts to examine how older adults became prey to financial fraud. RESEARCH DESIGN AND METHODS: In July 2020, 998 adults who were 60-98 years of age (93% White; 64% female) completed an online survey about experiences with financial fraud. Participants were recruited from gerontology research registries at Florida State University, University of Pittsburg, Virginia Tech, and Wayne State University. RESULTS: Over half (65.9%) of the respondents experienced a COVID-19-related scam attempt, with charity contributions (49%) and COVID-19 treatments (42%) being the most common. Perpetrators commonly contacted older adults electronically (47%) two or more times (64%). Although most respondents ignored the request (i.e., hung up the phone and deleted text/e-mail), 11.3% sent a requested payment, and 5.3% provided personal information. Predictors of vulnerability included contentment with financial situation, concern about finances in the aftermath of the pandemic, and wishing to talk to someone about financial decisions. Respondents targeted for a non-COVID-19 scam attempt were less likely to be targets of a COVID-19-related scam. DISCUSSION AND IMPLICATIONS: Older adults who were financially secure, worried about their financial situation, or wished they could speak with someone about their financial decisions appeared susceptible to falling victim to a fraud attempt. The high number of attempts indicates a need for a measurable and concerted effort to prevent the financial fraud of older adults.

COVID-19 Vaccination Experiences of Family Caregivers of Persons Living with Dementia in Rural Appalachia.

The study investigated COVID-19 vaccine acceptance, hesitancy, and barriers among family caregivers of rural community-dwelling persons living with dementia (PLwD). Three waves of telephone interviews with 26 family caregivers (96% White, 81% Female, Mage = 63 ± 12 years) were analyzed using thematic content analysis. At Wave 3, although all dyads were eligible, only 10 dyads had received their first dose of the vaccine. In 10 dyads, neither person had received the vaccine; in2 dyads, the caregivers did but the PLwD did not; and in 4 dyads, the caregiver did not but the PLwD did. Perceived direct and indirect health risks, cues from trusted allies, and ability to overcome vaccination barriers affected COVID-19 vaccination acceptance. Vaccine refusals were motivated by a low perceived risk of COVID-19, vaccine fear, and personal beliefs. Findings have implications for administration of preventative care practices for dementia family caregivers living in remote locations during a public health emergency.

Extended Family Caregivers for Persons Living With Dementia.

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.

Dual Caregivers of Persons living with Dementia: The Added Stress of COVID-19 Pandemic.

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.

Family Caregivers in Rural Appalachia Caring for Older Relatives With Dementia: Predictors of Service Use.

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.

Experiences of black women adult foster care providers for aging adults: negotiating power and care.

This study explored experiences of 23 Black women owners and operators of Adult Foster Care (AFC) homes for midlife and older adults. Semi-structured interview data focusing on multiple dimensions of the care context were analyzed using grounded theory methods. Women leveraged their resources as they invested their expertise, time, and relationships to support their residents and embraced the value of residents for their contribution to the success of AFC settings. The findings underline the critical roles of these AFC providers in maintaining safe and home-like care contexts for aging adults, in the face of systemic challenges.

Child Maltreatment, Youth Violence, Intimate Partner Violence, and Elder Mistreatment: A Review and Theoretical Analysis of Research on Violence Across the Life Course.

This article reports the results of a scoping review of the literature on life-course patterns of violence that span the developmental periods of childhood, adolescence, and early and middle adulthood. We also assess the evidence on elder mistreatment and its relation to earlier forms of violence. Additionally, we draw on theories and empirical studies to help explain the transmission of violence over time and relational contexts and the factors that appear to mitigate risks and promote resilience in individuals exposed to violence. Results suggest that encounters with violence beginning in childhood elevate the risk for violence in subsequent developmental periods. The strongest connections are between child maltreatment (physical abuse, emotional abuse, sexual abuse, and neglect) and violence in adolescence and between violence in adolescence and violence in early and middle adulthood. Persistence of violence into older adulthood leading to elder mistreatment is less well-documented, but probable, based on available research. We conclude that more attention should be paid to studying developmental patterns and intersecting forms of violence that extend into old age. To eradicate violence in all its forms, considerably more must be done to increase awareness of the repetition of violence; to connect research to actionable steps for prevention and intervention across the life course; and to better integrate systems that serve vulnerable children, youth, and adults. Primary prevention is essential to breaking the cycle of violence within families and to alleviating the risks to children caused by poverty and other external factors such as social disconnection within communities.

Effects of dyadic discrepancy in awareness of mild cognitive impairment on changes in care partner's burden over time.

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.

Dementia Family Caregiving in Rural Appalachia: A Sociocultural Model of Care Decisions and Service Use.

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.

Prediction of fall risk among community-dwelling older adults using a wearable system.

Falls are among the most common cause of decreased mobility and independence in older adults and rank as one of the most severe public health problems with frequent fatal consequences. In the present study, gait characteristics from 171 community-dwelling older adults were evaluated to determine their predictive ability for future falls using a wearable system. Participants wore a wearable sensor (inertial measurement unit, IMU) affixed to the sternum and performed a 10-m walking test. Measures of gait variability, complexity, and smoothness were extracted from each participant, and prospective fall incidence was evaluated over the following 6-months. Gait parameters were refined to better represent features for a random forest classifier for the fall-risk classification utilizing three experiments. The results show that the best-trained model for faller classification used both linear and nonlinear gait parameters and achieved an overall 81.6 ± 0.7% accuracy, 86.7 ± 0.5% sensitivity, 80.3 ± 0.2% specificity in the blind test. These findings augment the wearable sensor's potential as an ambulatory fall risk identification tool in community-dwelling settings. Furthermore, they highlight the importance of gait features that rely less on event detection methods, and more on time series analysis techniques. Fall prevention is a critical component in older individuals' healthcare, and simple models based on gait-related tasks and a wearable IMU sensor can determine the risk of future falls.

A Prospective Study on Child Abuse and Elder Mistreatment: Assessing Direct Effects and Associations With Depression and Substance Use Problems During Adolescence and Middle Adulthood.

BACKGROUND AND OBJECTIVES: We examined the prospective association between 2 measures of child abuse, one based on official child welfare records and the other based on parent self-reports, and the perpetration of elder mistreatment by an adult child. We also examined measures of adolescent and adult depression and substance use problems as predictors of elder mistreatment. RESEARCH DESIGN AND METHODS: Data are from a prospective study that began in the 1970s with a sample of children aged 18 months to 6 years of age. Analyses draw on data collected when child participants were in preschool and elementary school, when they were adolescents, and as adults at midlife (at ages 36 and 46, on average). Results are from bivariate correlations and multivariable path models in which variables from different life stages were entered in steps to assess their prediction of elder mistreatment. RESULTS: All variables were significantly correlated with elder mistreatment. In a final path model, parent self-reports of physical child abuse remained a significant, unique predictor of elder mistreatment. Adolescent and adult substance use problems were also statistically significant. DISCUSSION AND IMPLICATIONS: Few longitudinal studies have tracked patterns of abuse over time and relationships. Findings suggest that child abuse is a risk factor for the perpetration of elder mistreatment by an adult child. Substance use problems may also increase the risk for the perpetration of elder mistreatment. Further longitudinal research is needed to replicate and extend these findings in order to advance prevention and intervention programs and policies.

Violence and Abuse in Rural Older Women's Lives: A Life Course Perspective.

Intimate partner violence in later life includes physical, psychological, sexual, and financial abuse. Although some researchers have investigated how women in long-term violent partnerships cope with abuse, little is known about the history, experiences, and needs of older women who leave abusive relationships. From a feminist, life course perspective, we interviewed 10 women who had left their abusive partners later in life. We used qualitative methods to analyze the data and found four major themes: (a) the women used the past to account for abuse in their relationships later in life, (b) recognizing abuse signaled to the women to fight back and exit the relationship, (c) financial abuse and exploitation affected women's mental and physical health, and (d) rebuilding was especially challenging as the women faced their future alone with financial, physical, or mental health problems. We conclude that abuse presents lasting and unique challenges for older women.

Experiences With Involuntary Nursing Home Relocation: The Staff Perspective.

Although involuntary nursing home closures for operational and care-related reasons occur infrequently, few studies have examined the centrality of the actions of staff to facilitate residents' relocation adjustment. We interviewed 18 administrators and 43 staff working at 27 facilities about the relocation process for residents from two facilities that lost their Medicare and State Medicaid certification due to ongoing care deficiencies. Thematic analysis revealed three major themes throughout each aspect of the relocation process: (a) staff expectations were not met, (b) barriers/challenges were persistent, and (c) resident/family involvement was minimal. We offer proactive participant-derived recommendations for policy and practice to strengthen involuntary relocation processes to ensure a cooperative work environment and residents' well-being, regardless of the cause for involuntary closure.