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.].

Using digital phenotyping to understand health-related outcomes: A scoping review.

BACKGROUND: Digital phenotyping may detect changes in health outcomes and potentially lead to proactive measures to mitigate health declines and avoid major medical events. While health-related outcomes have traditionally been acquired through self-report measures, those approaches have numerous limitations, such as recall bias, and social desirability bias. Digital phenotyping may offer a potential solution to these limitations. OBJECTIVES: The purpose of this scoping review was to identify and summarize how passive smartphone data are processed and evaluated analytically, including the relationship between these data and health-related outcomes. METHODS: A search of PubMed, Scopus, Compendex, and HTA databases was conducted for all articles in April 2021 using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Review (PRISMA-ScR) guidelines. RESULTS: A total of 40 articles were included and went through an analysis based on data collection approaches, feature extraction, data analytics, behavioral markers, and health-related outcomes. This review demonstrated a layer of features derived from raw sensor data that can then be integrated to estimate and predict behaviors, emotions, and health-related outcomes. Most studies collected data from a combination of sensors. GPS was the most used digital phenotyping data. Feature types included physical activity, location, mobility, social activity, sleep, and in-phone activity. Studies involved a broad range of the features used: data preprocessing, analysis approaches, analytic techniques, and algorithms tested. 55% of the studies (n = 22) focused on mental health-related outcomes. CONCLUSION: This scoping review catalogued in detail the research to date regarding the approaches to using passive smartphone sensor data to derive behavioral markers to correlate with or predict health-related outcomes. Findings will serve as a central resource for researchers to survey the field of research designs and approaches performed to date and move this emerging domain of research forward towards ultimately providing clinical utility in patient care.

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.

Pragmatic Randomized Control Trial of a Coordinated Community Response: Increasing Access to Services for At-Risk Older Adults.

BACKGROUND: Elder abuse, neglect, and financial exploitation (EANF) impacts over five million community-dwelling older adults. Yet, no evidence-based intervention models exist that prevent EANF. OBJECTIVES: In this article, we describe the assessment of process outcomes for a Community Complex Care Response Team (C3RT) model developed, via a practitioner-researcher partnership, to reduce instances of EANF victimization among higher risk community-dwelling older adults by identifying and coordinating their service needs. Specifically, we evaluated whether this C3RT approach produced more service coordination among providers (measured as documented interagency communications), more referrals for services, and more enrollment in services. METHODS: A pragmatic randomized control trial using a 1:1 randomization scheme allocated participants to either the C3RT intervention (N = 74) or standard practice (N = 72) group offered by a local Area Agency on Aging. Outcome data were extracted from the participants' administrative service records. RESULTS: The participants assigned to C3RT had significantly more interagency communications and services provided (p < 0.05) than those in standard practice. CONCLUSIONS: Communications and services increased across a broad range of multidisciplinary services, which attend to the social determinants of health. This study is the first to use objective outcome measures to evaluate the processes of a coordinated community response approach systematically.

Early Stages of COVID-19 Pandemic Had No Discernable Impact on Risk of Elder Abuse and Neglect Among Dementia Family Caregivers: A Daily Diary Study.

There is widespread concern that elder abuse and neglect (EAN) incidents increased during the onset of the COVID-19 pandemic due in part to increases in risk factors. Initial reports relying on administrative systems such as adult protective services records produced mixed results regarding whether or not there was a change in EAN incidents. Using data from an ongoing longitudinal study on EAN in dementia family caregiving that started before the pandemic, we assessed the hypothesis that the pandemic is related to a change in probability of EAN and EAN protective factors. Family caregivers to persons with dementia completed two waves of 21 daily diaries, 6-months apart, assessing their daily use of EAN behaviors. The first group (n = 32) completed their first wave before the pandemic and their second wave during the pandemic. The second group (n = 32) completed both waves during the pandemic. For this cohort, the generalized linear mixed logistic model results showed inconsistent associations between the onset of COVID-19 and the probability of a caregiver engaging in elder abuse or neglect behaviors. In terms of protective factors, the use of formal services was not significantly impacted by COVID-19; however, the likelihood of receiving informal support from family and friends increased significantly during the pandemic period. Dementia family caregivers were not likely impacted negatively by initial pandemic restrictions, such as shelter-in-place orders, as anticipated. These findings contribute to our understanding of how distal, disruptive processes may influence more proximal caregiver stresses and the likelihood of EAN. Supplementary Information: The online version contains supplementary material available at 10.1007/s10896-022-00392-8.

Development and Implementation of a Coordinated Community Response to Address Elder Abuse and Neglect.

BACKGROUND: Elder abuse, neglect, and financial exploitation impacts over five million community-dwelling older adults in the United States. Although services are available to help these victims, they are often fragmented within communities with service providers having limited means to provide preventative services. The coordinated community response (CCR) is a type of coalition intended to overcome siloed services through a single-point-of-entry system and more team-based approaches to prevention. This article describes the development, implementation, and evaluation of the interagency functioning of a local CCR. METHODS: The main goal of the CCR has been to better serve victims of elder abuse, neglect, and financial exploitation. However, through the coalition's evolution, the mission of how to do this shifted from a victim service model to a prevention approach. Unique features of this CCR include a uniform consent form to allow sharing of protected client data among all service providers and a technology-supported infrastructure for service record documentation and referrals. EVALUATION: Using available data from administrative records, the number of unique interagency referrals for services to older adults at risk increased 450% from 2016 to 2018. The strength and type of connections between agencies changed over time. Among all eligible clients offered services, most (77%) agreed to provide uniform consent to allow data sharing among other local partner agencies. DISCUSSION: The evaluation showed that the coalition met most of its planned measurable outputs in the original logic model guiding the CCR programmatic development. The evaluation findings and lessons learned inform updated guidelines for self-assessment of CCRs.

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.].

Daily Context for Abusive and Neglectful Behavior in Family Caregiving for Dementia.

BACKGROUND AND OBJECTIVES: The purpose of this study was to identify risk and protective factors for abusive and neglectful behavior in the context of daily caregiving. RESEARCH DESIGN AND METHODS: Family caregivers who co-reside with a care recipient with Alzheimer's disease and related dementia, recruited from social media, completed 21-days of diaries. Multilevel modeling with days (n = 831) nested within caregivers (N = 50) was used to evaluate relationships between hypothesized risk and protective factors and the odds of an abusive or neglectful behavior on a given day. RESULTS: Disruptions in the daily routine and stress of the caregiver related to behavioral symptoms of the care recipient are significant risk factors for abusive and neglectful behavior. Participating in a meaningful activity with the care recipient when it occurs twice in a day is a significant protective factor against use of a neglect behavior (OR = 0.19; CI 0.06-0.64; p = .01), but not for abusive behavior. Hypotheses that spending the full day together would increase risk, and that receipt of instrumental support and caregiver participation in self-care would decrease risk, were not supported. DISCUSSION AND IMPLICATIONS: Findings demonstrate that risk of an abusive or neglectful behavior varies from day-to-day in the presence and absence of contextual factors, and that the majority of the variance in the odds an abusive or neglectful behavior occurring is related to day-level factors. Findings demonstrate that diary surveys are critical to identifying ecologically valid modifiable risk and protective factors for abusive and neglectful behaviors that can be targeted in future interventions.

Transitioning into the caregiver role following a diagnosis of Alzheimer's disease or related dementia: A scoping review.

OBJECTIVES: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis. DESIGN: Scoping review of published literature. DATA SOURCES: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases. REVIEW METHODS: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review. RESULTS: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role. CONCLUSIONS: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.

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.

Building Sangha in the American Healthcare Setting for Persons with Chronic Disease.

BACKGROUND: For persons with chronic disease, participation in meditation interventions can reduce anxiety, depression, and chronic disease symptoms in a dose dependent fashion. Unfortunately, information about how to support long-term participation in such an intervention is lacking. Therefore, a recent discovery of persons with chronic lung disease who have maintained a self-led meditation group for more than four years created an opportunity to analyze experiences, meanings and relationship dynamics of this community-based meditation group. METHODS: A focused ethnography was conducted using the following techniques: participant observation of four group meditation sessions, semi-structured interviews of six group participants, the interviewer's reflective practice and collection of demographic information. Analysis of transcribed audio-recordings followed an iterative approach. RESULTS: Findings highlighted the inclusive nature of the group sessions that supported meditation practice through the processing of ancient wisdom traditions similar to a traditional Sangha. Reflecting the current culture of non-affiliation, the group often moved beyond religious teachings to use the environment, literature and pop culture representations to teach wisdom traditions. Data analysis revealed that the holistic group characteristics of wisdom circling, non-Stopping, organic way-finding and sacred space were supported by identifiable yet inseparable individual and group actions. This holistic pattern is best described through the metaphor of flocking birds. CONCLUSIONS: This self-led group supports long term meditation practice and provides a sense of eudemonic well-being for a diverse group of individuals in an accessible community setting.

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

BACKGROUND: There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. METHODS: We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. RESULTS: We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. CONCLUSIONS: Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

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.

Identifying elder abuse & neglect among family caregiving dyads: A cross sectional study of psychometric properties of the QualCare scale.

BACKGROUND/OBJECTIVES: Universal screening for elder abuse and neglect is a current controversy in geriatrics, fueled by the lack of evidence on valid and reliable instruments. Since each U.S. State and many other countries have their own legal definitions of what constitutes elder abuse and neglect, this further complicates instrument development and clinical assessment. The purpose of this paper is to present data on the sensitivity and specificity of the QualCare Scale, an instrument with utility in detecting clinically significant elder abuse and neglect among older adults receiving care at home. DESIGN: Data used in this analysis were collected during a training program in which trainees completed assessments (N=80) of standardized case scenarios of caregiving dyads. Trainees completed the QualCare Scale during each assessment. SETTING: This training program, including the assessments of the standardized case scenarios, was completed using a custom designed virtual-reality platform. Trainees were able to interact with the environment, older adult and caregiver within the case scenario. PARTICIPANTS: Thirty-six nurses and social workers from two Michigan Medicaid Waiver Sites participated in the training program. Each participant assessed between one and five scenarios, yielding the sample of 80 assessments used in this analysis. MEASUREMENTS: The research team designed each standardized case scenario to reflect whether or not the QualCare Scale subscale score should indicate reportable elder abuse and neglect per the State statute. Accordingly, the research team's QualCare Scale scores for each scenario were used as the gold standard criterion of clinical significance for comparison against the participant's assessment scores. RESULTS: Sensitivity and specificity for each of the six QualCare subscales was determined. Overall, the subscales had high sensitivity (≥0.811) but a wide range for specificity (0.167-1.000). CONCLUSION: The QualCare Scale can be an effective tool in detecting clinically significant elder abuse and neglect among older adults receiving care at home. This tool is suitable and feasible for use by practitioners working in home care. The QualCare Scale score indicating clinically significant or reportable elder abuse and neglect can be raised or lowered to be consistent with State or Country statutes, or simply used to create appropriate care plans to support caregiving. Findings from the QualCare Scale can support the multidisciplinary team in planning for and evaluating preventative interventions.

Best Practices for the Identification of Elder Abuse and Neglect in Home Health.

Elder abuse and neglect (EA/N) affects over 1 million older adults each year, and disproportionately affects persons with dementia and older women. Home healthcare professionals are in an advantageous position to assess for, identify, and report EA/N. Lack of knowledge on EA/N risk factors, assessment tools, and mandatory reporting guidelines often prevent professionals from identifying and reporting EA/N. This article provides practical guidance on EA/N risk factors, assessment tools, and reporting responsibilities that can easily be implemented in practice.

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.

Gender, Relationships, and Elder Abuse: Assessing Aggression in Mother-Daughter Dyads.

The older adult population is growing rapidly, and with it comes a national concern for elder abuse. Elder abuse is an intentional act of harm or failure to provide care by a person in a trusted relationship with the elder. One relationship is often overlooked in both research and clinical practice as having special significance for elder abuse-that of the adult daughter-elderly mother. However, recent studies suggest that there are gender differences in the use of aggression, which challenge standard assessments of abuse and may be important for assessing mother-daughter relationships. In this narrative review article, the authors review the relevant literature on female-to-female aggression, with an emphasis on its application to mother-daughter relationships and elder abuse. Measurement tools are evaluated in light of the state of the science. The authors conclude with specific recommendations for clinical practice.