Neglect of older adults living with dementia in family caregiving: A dimensional concept analysis.

OBJECTIVE: To present a concept analysis of neglect, specifically examining its occurrence and implications in the context of family caregiving for older adults living with dementia. METHODS: A literature search was conducted in Medline, CINAHL, Scopus, and Embase databases in February 2023. Inclusion criteria targeted articles focusing on neglect in dementia family caregiving, leading to the identification of 11 articles for thorough review. Employing Caron and Bowers' dimensional analysis approach, the concept analysis aimed to elucidate neglect as a social construct shaped by diverse contexts, perspectives, and underlying assumptions. RESULTS: Neglect in this context emerged as a multidimensional phenomenon, influenced by contextual elements such as activities of daily living and behavioral symptoms of dementia. It encompasses dimensions including "expectations of unmet needs", "maladaptive behaviors", and "feelings of guilt", considering the perspectives of both caregivers and individuals living with dementia. Recognizing neglect as a dyadic phenomenon emphasizes the significance of interactions between caregivers and individuals living with dementia. CONCLUSION: A comprehensive understanding of neglect in dementia family caregiving is crucial for effective interventions and support systems. The dyadic perspective is vital for accurate assessment. Primary care physicians, mental health, nurses, and other health professionals play a key role in prevention and supporting family caregivers. Further research is needed to explore the dynamics of dementia caregiving settings strengthening prevention strategies against elder neglect.

Subsyndromes and symptom clusters: Multilevel factor analysis of behavioral and psychological symptoms of dementia with intensive longitudinal data.

INTRODUCTION: Behavioral and psychological symptoms in dementia (BPSD) are dynamic phenomena with a high amount of intraindividual variability. We applied a multilevel framework to identify subsyndromes (between-person factors) that represent clinically relevant profiles of BPSD and identify symptom clusters (within-person factors) that represent contextually driven daily symptom experiences. METHODS: This study used an intensive longitudinal design in which 68 co-residing family caregivers to persons living with dementia were recruited to proxy report on their care recipient's daily symptom experiences of 23 different BPSD for eight consecutive days (n = 443 diaries). A multilevel exploratory/confirmatory factor analysis was used to account for nested data and separate within-person variances from between-level factor estimates. RESULTS: Exploratory factor analysis identified a 4-between 3-within factor structure based on fit statistics and clinical interpretability. DISCUSSION: This study offers major methodological and conceptual advancements for management of BPSD within Alzheimer's disease and related dementias by introducing two related but distinct concepts of subsyndromes and symptom clusters. HIGHLIGHTS: Because behavioral and psychological symptoms of dementia (BPSD) are dynamic temporal phenomenon, this introduces measurement error into aggregate group-level estimates when trying to create subsyndromes. We propose a multilevel analysis to provide a more valid and reliable estimation by separating out variance due to within-person daily fluctuations. Using a multilevel exploratory factor analysis with intensive longitudinal data, we identified distinct and meaningful groups of BPSD. The four factors at the between-person level represented subsyndromes that are based on how BPSD co-occurred among persons with Alzheimer's disease (AD). These subsyndromes are clinically relevant because they share features of established clinical phenomena and may have similar neurobiological etiologies. We also found three within-person factors representing distinct symptom clusters. They are based on how BPSD clustered together on a given day for an individual with AD and related dementias. These clusters may have shared environmental triggers.

The relationship between daily stressors, social support, depression and anxiety among dementia family caregivers: a micro-longitudinal study.

Objectives: This study aimed to examine the relationships between daily stress, social support, and the mental health of dementia family caregivers.Methods: A national sample of family caregivers (N = 165) completed daily diary surveys over 21 days (n = 2,841). Mixed-level models were used to examine the daily odds of experiencing depression and anxiety-related symptoms when risk factors, such as the stress of managing behavioral symptoms of dementia (BSDs) exhibited by the person living with dementia, and protective factors, such as social support, were reported on a given day.Results: Dementia caregivers were more likely to report depression and anxiety-related symptoms when BSDs were present and perceived as more bothersome than usual. Specific BSDs, including restless behaviors and intense emotions, were also found to increase the daily odds of experiencing depression and anxiety symptoms. The daily odds of depression symptoms decreased on days when caregivers reported receiving instrumental support, while the daily odds of anxiety symptoms increased on days when caregivers reported receiving emotional support.Conclusions: The daily odds of experiencing depression and anxietyvary based on the presence of specific BSDs and social support. These findings support the need for targeted interventions to improve the day-to-day well-being of dementia family caregivers.

Dynamic structural equation modelling evaluating the progressively lowered stress threshold as an explanation for behavioural symptoms of dementia.

AIM: To evaluate the progressively lowered stress threshold (PLST) conceptual model as an explanation for behavioural symptoms of dementia and test several of its hypothesized propositions. The PLST model suggests that due to impairments in coping, persons living with dementia have a reduced threshold for stress and respond with more behavioural symptoms of dementia as stress accumulates throughout the day. DESIGN: Intensive longitudinal design. METHODS: A sample of N = 165 family caregivers completed brief daily diary surveys for 21 days between the dates of 7/2019 and 8/2020, reporting on a total of 2841 days. Dynamic structural equation modelling was used as the analytic technique to examine the impact of caregiver and care recipient environmental stressors on the diversity of behavioural symptoms of dementia to account for the nested data structure and autoregressive relationships. FINDINGS: Results show direct relationships between environmental stressors and diversity of behavioural symptoms of dementia that same day and the following day. CONCLUSION: Findings provide support for the PLST model propositions. Further, findings suggest an extension to the conceptual model is warranted given evidence of an exposure/recovery trajectory and the lagged effects of stress exposure on behavioural symptoms of dementia presentation. IMPACT: This study tested whether a commonly used nursing model does in fact explain the occurrence of behavioural symptoms of dementia. The main findings support using the model as an intervention framework and suggest the model should be adapted to consider recovery trajectories. Since behavioural symptoms of dementia represent complex and dynamic temporal phenomena, traditional longitudinal assessments and analyses are an insufficient measurement modality for testing models. Findings inform the design of environmental-modification type interventions for behavioural symptoms of dementia management and the methods to evaluate such interventions.

Conceptualizing How Caregiving Relationships Connect to Quality of Family Caregiving within the Stress Process Model.

Family caregivers provide the majority of care for older and disabled family members living with an illness or disability. Although most caregivers want to provide high-quality care, many report providing care that is potentially harmful. We apply the Stress Process Model to review the preponderance of literature implicating quality of the relationship between caregivers and care recipients as a factor contributing to quality of family caregiving. In drawing together literature on caregiving relationships and caregiving quality, this commentary identifies potentially modifiable intervention targets to develop programs to support high-quality caregiving to older adults living with a chronic illness or disability.

Gender Differences in Caregiver Burden Among Family Caregivers of Persons With Dementia.

The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers. [Journal of Gerontological Nursing, 47(7), 33-42.].

Recruitment, enrollment & data collection with victims of elder abuse and neglect identified from police incident reports.

This study evaluated the success of researcher-generated recruitment, enrollment, data collection, and safety protocols for field research with victims of elder abuse and neglect (EAN) identified from police incident reports in terms of their success including cost-effectiveness, ability to generate a representative sample, and safety. After reviewing 492 police incident reports involving victims age 65 years or older to identify cases of EAN 62 victims were identified. Mail, phone, and in-person recruitment strategies were used. After 259 recruitment attempts, 52 (84%) eligible victims were contacted, of which 24 (46%) consented to participate. Phone calls were the least expensive mechanism to produce a successfully enrolled participant. Findings from a regression show completion of a research interview could not be predicted by victim, suspect, or offense characteristics, indicating that the recruited victims likely represent the population they were drawn from. No safety or adverse events occurred.

EATI Island - A virtual-reality-based elder abuse and neglect educational intervention.

Despite high prevalence rates of elder abuse and neglect (EA/N), compliance with mandatory reporting remains low. A lack of practical training on EA/N has been identified as a barrier. This article describes the development, implementation, and evaluation of an innovative virtual-reality-based educational intervention intended to improve EA/N recognition and reporting among nurses and social workers providing in-home services. The educational intervention consisted of two parts, including an introductory course and advanced assessment training in virtual reality. The advanced assessment training was focused on learning to use the QualCare Scale, an instrument used to assess quality of family caregiving. Data was evaluated in terms of user satisfaction, changes in knowledge, and changes in practice. Results indicate that participants were satisfied with the content and format of the training program. Participants made gains in knowledge in identification and had 99% accuracy in their mandatory reporting decisions. Importantly, professionals reported making changes in their daily practice based on knowledge and skills learnt. Evaluation data indicate that this interdisciplinary training program was a satisfactory way to learn that produced changes in knowledge and impacted clinical practice. Few implementation barriers were encountered during this project suggesting it would be replicable.

Recognizing and Responding to the "Toxic" Work Environment: Worker Safety, Patient Safety, and Abuse/Neglect in Nursing Homes.

This grounded theory study examined how the certified nursing assistant (CNA) understands and responds to bullying in the workplace. Constant comparative analysis was used to analyze data from in-depth telephone interviews with CNAs ( N = 22) who experienced bullying while employed in a nursing home. The result of the analysis is a multistep model describing CNA perceptions of how, over time, they recognized and responded to the "toxic" work environment. The strategies used in responding to the "toxic" environment affected their care provision and were attributed to the development of several resident and worker safety outcomes. The data suggest that the etiology of abuse and neglect in nursing homes may be better explained by institutional cultures rather than individual traits of CNAs. Findings highlight the relationship between worker and patient safety, and suggest worker safety outcomes may be an indicator of quality in nursing homes.

Relationship management strategies for daughters in conflicted relationships with their ageing mothers.

AIMS: To study relationship management strategies of daughters in conflicted relationships with their mothers and how they promoted or prevented elder abuse. BACKGROUND: Daughters have enduring, unique relationships with their mothers that often carry over into caregiving. Pre-caregiving relationship quality is related to many caregiving outcomes, although it is unclear how. DESIGN: Qualitative study. METHODS: Grounded theory design, informed by feminism, with telephone interviews conducted between January 2013-July 2013. The sample (N = 13) was recruited through an online recruitment strategy, with advertisements posted on relevant websites asking 'Are you in an abusive relationship with your ageing mother?' RESULTS/FINDINGS: Daughters used coping strategies and self-protective strategies aimed at decreasing their exposure to aggression and emotional distress when interacting with their ageing mothers. Daughters also used spiteful aggression out of the desire for revenge. CONCLUSION: Although the daughters' strategies served their personal needs, they jeopardized the mothers' needs by creating an environment where neglect could occur. Daughters also readily and intentionally used aggression against their mothers. These were strategies daughters have found useful. These strategies may be potential areas for designing interventions to promote healthy family relationships and decrease the occurrence of elder abuse and neglect.

Adult Daughters' Descriptions of Their Mother-Daughter Relationship in the Context of Chronic Conflict.

The purpose of this article is to describe, from the perspective of the adult daughter, the mother-daughter relationship in the context of chronic conflict. Grounded theory methodology was used. An online recruitment strategy was used to identify a sample of adult daughters (N = 13) who self-identified as having an abusive relationship with their aging mother. Data collection was completed through semi-structured telephone interviews. Daughters framed their relationship around their perceptions of past childhood injustices. These injustices invoked strong negative emotions. Daughters had equally strong motivations for sustaining the relationship, driven by desire to reconcile their negative experience through seeking validation and futile-hoping as well as a sense of obligation to do due diligence. Together these factors created an environment of inevitable confrontation and a relationship defined by chronic conflict. Findings from the study provide theoretical insights to the conceptualization of aggression, power relationships, and the development of elder abuse and neglect.

Development of a causal model for elder mistreatment.

Elder mistreatment (EM) is an act committed by a person in a trusted relationship with an elderly person. Through the process of theory synthesis, a new model was developed, which explains the development of aggression (physical and verbal) toward elders by adult children in EM. The proposed model is set within the context of intimate partner violence and emphasizes that rather than arising in caregiving, aggression may be evident in the pre-caregiving relationship and continue into caregiving situations. An understanding of the causal origins of EM is essential in designing intervention to help families have healthy relationships.

Examining barriers to self-reporting of elder physical abuse in community-dwelling older adults.

One out of 10 older adults experiences elder abuse in their lifetime, though less than one third of these cases ever get reported. The purpose of this study was to describe older adults' perceptions of physical abuse (PA) as a type of elder abuse including reasons why they may or may not self-report. An author developed vignette scale was used to present three types of PA and three barriers to reporting for each of three living situations. Older adults (n = 76) rated perceptions of whether or not the situation is abusive, likelihood of reporting and likelihood of reporting when presented with each of three barriers. The study participants had a consistent perception of PA; however the barriers affected their likelihood of reporting, which varied across types and situations. The results provide further evidence that reporting abuse is multifactorial and have implications for educational interventions.

Self-Compassion and Emotion Dysregulation Mediate the Effect of Stress Appraisals on Elder Abuse and Neglect Behaviors in Dementia Family Caregiving.

OBJECTIVES: The purpose of this paper is to evaluate the mechanistic process by which family caregivers' situational stress appraisals of behavioral symptoms of dementia (BSD) increase the likelihood of a caregiver engaging in abusive and neglectful behaviors toward their care recipient with dementia. We test the hypotheses that (1) the effect of daily BSD stress appraisals on elder abuse and neglect (EAN) is mediated by the caregivers' emotion dysregulation (2) and the mediation path is moderated by self-compassion. METHODS: This study employed a multitime series design in which participants (N = 453) completed traditional longitudinal surveys at enrollment followed by 21 sequential days of diary surveys (n = 9,513). The hypothesized moderated mediation path was evaluated through a multilevel structural equation model. RESULTS: Hypotheses were supported. At the within-person level, daily BSD stress appraisal has a significant direct effect on daily EAN. At the between-person level, the path was no longer significant implying a full mediation of emotion dysregulation. The main effect of self-compassion and the interaction term (emotion dysregulation × self-compassion) were also statistically significant indicating the path between emotion dysregulation and EAN is moderated by self-compassion. DISCUSSION: This study significantly advances the field by empirically showing a mechanistic pathway for a theoretical explanation of EAN. These findings represent a breakthrough for the field and identify modifiable intervention targets for future behavioral interventions to prevent EAN. Emotion (dys)regulation and self-compassion are modifiable traits and skills that can be learned, with robust evidence bases of efficacious interventions that can be adapted for context to dementia family caregiving.

Elder Mistreatment Within Stroke Family Caregiving.

This secondary data analysis sought to identify characteristics associated with mistreatment among chronic stroke survivors who transition to dementia. We examined baseline data from a multi-time series survey study (n = 453; where caregivers of those with stroke n = 107, and those without stroke, n = 346) on caregiving experiences influencing dementia family caregivers' abusive or neglectful behaviors. Inferential statistical analysis indicated that baseline mistreatment rates were similar across stroke and non-stroke subgroups, though this finding was not significant. Caregiver depression was significantly associated with mistreatment. Multi-morbidity, prescription medication use, and limited mobility were more common among stroke survivors. Stroke-related complications may impose a greater burden of care upon family caregivers whose care recipients also have dementia. Determining timepoints of heightened mistreatment risk for stroke survivors may significantly impact long-term trajectories of stroke management to screen and identify those who may benefit from added support and intervention.

Emotion Regulation, Coping Strategies, and Hazardous Drinking Among Family Caregivers of People With Alzheimer's Disease and Related Dementias.

PURPOSE: The current study investigated hazardous drinking and alcohol use disorders among 453 family caregivers of individuals living with Alzheimer's disease and related dementias (ADRD). METHOD: We examined the prevalence of hazardous drinking and its relationship with emotion regulation and coping strategies (problem-solving, social support, and avoidance) using data from the first wave of a longitudinal study on daily ADRD caregiving experiences. A binary logistic regression model was performed to predict the relationship between potential risk factors and hazardous drinking. RESULTS: Findings revealed that 18.1% of ADRD caregivers screened positive for hazardous drinking based on the Alcohol Use Disorders Identification Test-Consumption. Caregivers experiencing greater difficulties in emotion regulation and greater reliance on avoidance as a coping strategy were at higher risk of screening positive for hazardous drinking. CONCLUSION: These findings stress the importance of targeted interventions to improve emotion regulation and reduce avoidance coping in ADRD caregivers, ultimately enhancing their well-being. [Research in Gerontological Nursing, 17(2), 81-90.].

Care-Resistant Behavior Trajectories During Mouth Care Among Nursing Home Residents With Dementia.

BACKGROUND AND OBJECTIVES: This study examined day-to-day variation in care-resistant behaviors (CRBs) exhibited by persons living with dementia during mouth healthcare and the potential influence of time of day on CRB trajectories. RESEARCH DESIGN AND METHODS: A secondary analysis was conducted on a sample of 75 nursing home-dwelling persons living with dementia who exhibited CRBs during mouth care activities. Over 21 days, CRBs were measured using the revised Resistiveness to Care scale (RTC-r) during morning and afternoon mouth care sessions. Group-based trajectory modeling was used to identify trajectory patterns and assess differences between morning and afternoon CRB patterns. RESULTS: Three trajectory patterns were identified: morning CRB trajectory patterns showed 50.6% of persons living with dementia had consistently low RTC-r scores, 37.5% of persons living with dementia exhibited fluctuating, moderate RTC-r scores, and 11.9% exhibited RTC-r scores that started high and then decreased over time. Similarly, CRB trajectory patterns during afternoon mouth care showed a consistently low RTC-r score for 54.5% and a fluctuating moderate RTC-r score for 38.6% of persons living with dementia. However, the third CRB trajectory group followed a high-increasing trajectory, with RTC-r scores starting high and continuing to increase for 6.9% of persons living with dementia. DISCUSSION AND IMPLICATIONS: CRBs are dynamic and vary within days and over time; however, the time of the day is often not considered in interventions to manage CRBs. Thus, it is important to consider the timing of providing mouth care for persons living with dementia. Based on the characteristics of the trajectories, we suggest that morning mouth activities may be more efficient.

Mechanisms Underlying the Use of Abusive and Neglectful Behaviors in Dementia Caregiving: The Role of Caregiver Mental Health.

PURPOSE: In dementia family caregiving, caregiver psychopathology has been frequently identified as a possible risk factor for the use of physically abusive, psychologically abusive, and neglectful behaviors toward care recipients. Yet, the mechanistic role of psychopathology in the use of these behaviors is not understood. The purpose of the current study is to determine the role of caregiver mental health in their daily risk of engaging in physically and psychologically aggressive and neglectful behaviors toward their care recipient with dementia. METHOD: We used an intensive longitudinal design to survey family caregivers daily over 21 days. Using generalized linear mixed models, we evaluated the differential impact of caregivers' (N = 453) experience of major depression and generalized anxiety disorders measured at baseline versus 9,513 daily ratings of depressive and anxiety symptom severity, and interactions across levels, on the daily odds of engaging in physically abusive, psychologically abusive, and neglectful behaviors. RESULTS: Caregivers with clinically significant depression or anxiety at baseline had higher daily odds of engaging in each type of abusive and neglectful behavior. Worsened depressive symptoms (compared to individuals' average across all days) on a given day were associated with increased odds of engaging in psychologically and physically aggressive behaviors on the same day. Worsened anxiety symptoms on a given day were associated with increased odds of psychologically aggressive and neglectful behaviors. CONCLUSION: A key finding was lack of a significant interaction effect between depression and anxiety disorders and mental health symptomology on the daily odds of engaging in abusive and neglectful behaviors. This finding indicates that daily depressive and anxiety symptoms are generalizable intervention targets across the family caregiver population and do not only increase risk among family caregivers with depressive and anxiety disorders. [Research in Gerontological Nursing, 17(5), 227-236.].

Patterns of Family Conflict and Accusations of Abuse in Dementia Family Caregivers: A Latent Class Analysis.

BACKGROUND AND OBJECTIVES: Family conflict is a stressor for dementia family caregivers, yet its impact may differ based on the relationship between caregivers and their recipients. This study's objectives were to categorize caregivers into groups based on family conflict, examine whether the relationship to the recipient influences group membership, and determine whether these groups are associated with engaging in abusive and neglectful behaviors. RESEARCH DESIGN AND METHODS: This national, cross-sectional study of 453 dementia family caregivers used latent class analysis to generate groups based on family conflict and abuse accusations. A multinomial logistic regression determined if relationship type (i.e., being a spouse, child, or grandchild to the care recipient or having a nontraditional relationship) predicted group membership. Groups were examined as predictors of abusive and neglectful behaviors using analysis of variance. RESULTS: A 4-class solution emerged as the best fit: 3 groups with varying probabilities of family conflict and 1 group with elevated probabilities of abuse and neglect accusations. Relationship typed predicted membership in these classes. Group membership predicted abusive and neglectful behaviors. DISCUSSION AND IMPLICATIONS: Adult children were more likely to experience high amounts of family conflict, whereas nontraditional caregivers were less likely to experience abuse and neglect accusations. Membership in the accusations group was a unique risk factor for abusive and neglectful behaviors. These findings support the need for continued investigation of family conflict in dementia caregivers. They also call to examine how family relationship types, including nontraditional family structures, influence caregiving outcomes.

Shared Activities as a Protective Factor Against Behavioral and Psychological Symptoms of Dementia and Caregiver Stress.

Background and Objectives: Most persons with dementia experience behavioral and psychological symptoms (BPSD). While there is evidence that structured activity programs can be beneficial for persons with dementia and their caregivers, it is not well understood how joint engagement in shared activities affects BPSD and caregiver stress. The purpose of this study was to examine the moderating effect of doing a shared activity on the BPSD and caregiver stress. Research Design and Methods: This study used an intensive longitudinal observational design in which caregivers completed baseline and once-a-day diary surveys for 21 days. Caregivers were asked whether they did a pleasant noncare activity with their relative, the presence of 8 BPSD, and their stress level. A moderation model in a structural equation model examined the relationship between these variables. Results: Our sample consisted of 453 caregivers (87.4% female, 51.4% non-Hispanic White, mean age 53 years [standard deviation {SD}: 14]) and person living with dementia whose mean age was 79 years (SD: 9). On days when the caregivers engaged in a shared activity together with person living with dementia, there was a significant decrease in the BPSD (estimate -0.038, standard error [SE] = 0.016, 95% confidence interval [CI]: -0.069, -0.007, p value = 0.018). The effects of engaging in a shared activity decreased the impact of caregiver stress by 0.052 (estimate -0.052, SE = 0.018, 95% CI: -0.087, -0.017, p value = 0.004). At the between-person level, no differences were found in BPSD across caregivers who engaged or did not engage in shared activities. Discussion and Implications: The results of our study indicate that doing a shared activity is associated with reduced BPSD among persons with dementia and may buffer the impact of caregiver stress on BPSD. Shared activities should be considered a key intervention component for dementia caregivers.