Poor Caregiver Research Articles

FINANCIAL HEALTH AND WELL-BEING OF RURAL CAREGIVERS OF OLDER ADULTS WITH CHRONIC ILLNESSES

Abstract Rural caregivers experience various financial stressors and challenges in providing care to their ill family members. Rural health disparities such as limited access to care, economic opportunities, resources, and support pose increased financial threats and insecurity resulting in poor patient and caregiver outcomes. Our study aimed to explore perceived financial stressors/challenges and their impacts on the self-care and well-being of rural caregivers of older family members with serious chronic illness. Using a purposive sampling approach, we did qualitative interviews among N=20 rural female caregivers caring for their older family member with any serious chronic illness. Interviews were done in-person and online, interview duration was about 30-45 minutes. Data was transcribed and analyzed deductively and inductively using thematic content analysis. Major financial impacts of caregiving included: leaving job or reducing work hours, time constraints on caregivers’ self-care, inability to balance family relations and caregiving roles, and difficulty navigating financial processes in the existing healthcare system. These challenges led to cutting down on groceries, reliance on retirement savings, and lack of personal time. Participants faced sleep and diet disruptions, shouldered financial decisions alone with limited or no support, and felt guilty over unfulfilled care recipient wishes due to financial constraints. Adequate self-care, coping, and well-being are associated with improved financial well-being and reduced financial threat. Caregiver support programs should focus on strategies and interventions to improve the financial well-being and overall quality of life of caregivers in the rural communities.

Exploratory study of French healthcare workers' experiences of anosognosia in Alzheimer's disease and related disorders.

Anosognosia or lack of insight is a common feature of Alzheimer's disease (AD) and associated disorders. It is an impairment in the ability to recognize the disease and related symptoms. Anosognosia is associated among patients with poor compensatory strategies, behavioral disorders, apathy and caregiver burden. Therefore, its early identification by healthcare workers is a major challenge in order to provide support for both patients and caregivers. To explore the knowledge, attitudes and experiences of French healthcare workers relating to anosognosia in AD and related disorders. An online self-completed questionnaire was created for the study. It was anonymous and divided into three dimensions: general knowledge, confidence, and subjective experiences of anosognosia. One hundred and eleven healthcare workers completed the questionnaire. Mann Whitney and Kruskal Wallis tests were used to determine the variables associated with the total knowledge and confidence scores. Ordinal logistic regressions were performed to explore the associations between subjective experiences and demographics. The participants had moderate knowledge. Knowledge scores were influenced by their experience in the geriatric field, type of profession, workplaces and training. The areas where knowledge was poorest were anosognosia assessment and management. The participants with the lowest knowledge levels were those interacting the most with patients, especially at home. Overall, they identified difficulties related to anosognosia and did not seem confident about their ability to deal with this condition. This study determines specific areas for training on anosognosia, such as identification, assessment and management of this condition.

Caregiving Challenges From Persistent Pain Among Family Caregivers to People With Dementia.

Many family caregivers to people with dementia experience persistent physical pain. Though caregivers' pain is associated with poor caregiving outcomes, there is little research on how pain challenges caregiving to yield poor outcomes. This study developed a typology of caregiving challenges from pain among family caregivers to people with dementia. We conducted semistructured, in-depth interviews with 25 family caregivers living with persistent pain and caring for people with dementia. We inductively analyzed data via a thematic analysis approach, wherein we identified and categorized caregiving challenges stemming from caregivers' pain. We then analyzed how challenges were related to one another and their consequences for caregiving outcomes. Analysis revealed 3 interrelated categories of caregiving challenges from living with pain: (a) physical (e.g., difficulty lifting care recipient), (b) psychological/emotional (e.g., worry about future care if their pain condition worsens), and (c) familial/relational (e.g., resentment toward family without pain for not helping with care). Caregivers reported that these challenges compounded one another in ways that made both caregiving and pain management more difficult. Moreover, challenges led to caregivers delaying or skipping care tasks. The nature of challenges and their connection to caregiving outcomes were dependent on various supporting factors, such as whether caregivers reported benefits from their own pain (e.g., greater empathy). The resulting typology informs a conceptual model to guide future translational research on caregivers' pain, including illuminating promising intervention targets of pain self-management programs for family caregivers to people with dementia.

Transactional models of depression via caregiver-child interactions: Evaluating conflict resolution as a source of resilience in adversity-exposed families

BackgroundYouth who experienced early life caregiving adversity (ECA) are at increased risk for developing depression, which may in part reflect a heightened vulnerability to the deleterious effects of later-life stressors, including poor caregiver mental health and interpersonal conflict. Transactional models posit bidirectional influences between caregivers and children that operate over development and more proximally across interactions. ObjectiveTo address gaps in knowledge of bidirectional influences between caregivers and children, and differences therein based on ECA exposure, we evaluated the effects of caregiver and child depressive symptoms on their own and each other’s emotion-related behavior during conflict resolution, and the effects of their behavior on their own and each other’s changes in affect expression from conflict resolution to a recovery task. Participants and setting161 caregiver-child dyads (child age 6–16 years; 49 % female youth; 45 % caregivers of ECA-exposed youth) participated in videorecorded conflict resolution and subsequent recovery tasks. MethodsCaregivers reported on their own and their child’s depressive symptoms. Trained coders rated caregiver and child positive and negative affect and supportive and unsupportive emotion-related behavior. ResultsContrary to expectations derived from models of stress-sensitization, results of actor-partner interdependence models demonstrated positive associations between caregiver depressive symptoms and supportive child behavior, among ECA-exposed families. Among these families, only, child supportive behavior was also associated with greater increases in subsequent caregiver positive affect during the recovery task. ConclusionsIn contrast to models of stress-sensitization, youth supportive reactions to caregiver distress may initiate positive spirals that transcend interactions. Implications for intervention efforts are discussed.

Measuring Food Insecurity in Children under 5 Years of Age with Acute Undernutrition in Valle Del Cauca-Colombia.

Our objective was to assess food insecurity among children under 5 years old with moderate, and severe malnutrition from Valle del Cauca, a state located in the southwestern region of Colombia. A descriptive observational study was conducted, including children whose weight-for-height (W/H) indicator was below 2 SD, as recorded on the World Health Organization (WHO) growth charts, or who exhibited severe malnutrition phenotypes such as marasmus or Kwashiorkor. Family and child food security were evaluated using the Latin American and Caribbean Food Security Scale (ELCSA). 58.6% of households with acutely malnourished children experienced food insecurity. A statistically significant relationship was found between food insecurity and children of Afro-Colombian and Indigenous descent. According to caregivers' perceptions, 30.2% of child malnutrition cases were related to poor feeding and caregiving practices. Not all children with acute malnutrition suffer from food insecurity. Therefore, the findings of this research suggest that governmental efforts should focus not only on ensuring food availability, but also on educating caregivers about the importance of a balanced and nutritious diet tailored to the specific characteristics of each region and promoting appropriate caregiving practices.

Understanding Family Caregivers' Needs in Coping with the Behavioral and Psychological Symptoms of People with Dementia: A Hermeneutic-Phenomenological Study.

Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD. The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being. This study used a hermeneutic-phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software. The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes. The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.

Microbiome signature of posttraumatic stress disorder and resilience in youth.

Identifying biomarkers that can distinguish trauma-exposed youth at risk for developing posttraumatic pathology from resilient individuals is essential for targeted interventions. As trauma can alter the microbiome with lasting effects on the host, our longitudinal, multimeasure, cross-species study aimed to identify the microbial signature of posttraumatic stress disorder (PTSD). We followed children exposed to war-related trauma and matched controls from early childhood (Mage = 2.76 years, N = 232) to adolescence (Mage = 16.13 years, N = 84), repeatedly assessing posttraumatic symptomatology and maternal caregiving. In late adolescence, we collected fecal samples from mothers and youth and assessed microbiome composition, diversity, and mother-child microbial synchrony. We then transplanted adolescents' fecal samples into germ-free mice to determine if behavioral changes are observed. Youth with PTSD exhibited a distinct gut microbiome profile and lower diversity compared to resilient individuals, and microbiome diversity mediated the continuity of posttraumatic symptomatology throughout development. Low microbiome diversity correlated with more posttraumatic symptoms in early childhood, more emotional and behavioral problems in adolescence, and poor maternal caregiving. Youth with PTSD demonstrated less mother-child microbial synchrony, suggesting that low microbial concordance between mother and child may indicate susceptibility to posttraumatic illness. Germ-free mice transplanted with microbiomes from individuals with PTSD displayed increased anxious behavior. Our findings provide evidence that the trauma-associated microbiome profile is at least partially responsible for the anxiety component of the PTSD phenotype and highlight microbial underpinnings of resilience. Further, our results suggest that the microbiome may serve as additional biological memory of early life stress and underscore the potential for microbiome-related diagnosis and treatment following trauma. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Predictors of perceived caregiver strain in carers of patients living with heart failure: data from a collectivist society

Abstract Background Informal caregivers are individuals voluntarily caring for someone facing a disease, disability, or any condition requiring particular attention.1 They provide around 90% of in-home care and play a key role in supporting the wellbeing and care of people living with chronic illnesses.2 Such diagnoses alter roles within the family unit and cause feelings of uncertainty, anxiety, depression, resentment, among others. This is true in caregivers of patients living with Heart Failure [HF]. High care dependency and lack of formal support for caregiving have increased the prevalence of caregiver strain. Purpose To describe caregiver strain and identify its determinants among caregivers of patients living with HF. Methods This was a cross-sectional correlational study. Caregivers were assessed for caregiver strain (Modified Caregiver Strain Index [MCSI]), social support (Carers of Older People in Europe Index [COPE]), and quality of life (QOL; Short Form 12). MCSI scores were compared across dyadic variables and then used as the outcome variables to create the regression model. Results 108 patients (age 63.54 ± 10.52 years, 70.4% males, 81.55% married) and caregivers (age 49.37 ± 13.69 years, 14.8% males, 82.2% married) were included. More than 80% of the dyads lived in the same household. Caregivers have been assuming this role for an average of 8.53 years and a mean of 37.73 hours per week. Almost 50% of the caregivers reported providing minimal care for their patient while 35% reported providing full care. An alarming 67.6% of the dyads were considered discordant and did not agree on how and by who the care is performed. Caregiver strain was average in this sample with a mean of 11.32 ± 6.94. Caregivers who provided full care had significantly higher caregiver strain (13.75 ± 6.16 versus 9.82 ± 7.16; F (2,76) = 3.329, p = 0.041). Poor caregiver perceived quality of the dyad was significantly associated with higher caregiver strain (16.07 ± 6 versus 10.71 ± 6.9; p < 0.001). Caregivers of symptomatic patients had lower caregiver strain than caregivers of asymptomatic patients (9.90 ± 7.43 versus 12.69 ± 6.21; p = 0.019). Being stressed in caregiving was significantly associated with higher caregiver strain (r = 0.774; p < 0.001). Having lower physical and/or mental QOL were associated with higher strain (r = -0.291 and -0.536 respectively; p < 0.001). Finally, a higher negative impact from caregiving, a lower mental and physical QOL, and a lower relationship quality explained about 63% of the variance in Caregiver Strain (F = 44.001; p < 0.001). Conclusion Knowledge from this study will help place caregivers’ health at the core of caregiving processes. HF nurses and physicians should start giving special attention to caregivers of HF patients who show signs if high caregiver strain. Interventions to reduce strain should be designed to address caregivers’ appraisal of dyad relationship quality, instrumental social support, and QOL.

PremieFeed: Investigating Preterm Infant Feeding Behaviors, Growth, and Caregiver Experiences in the First Weeks After NICU Discharge.

This study aimed to longitudinally investigate the preterm infant feeding regimens, feeding behaviors, effect on infant growth, and caregiver perceptions and experiences with feeding in the first 4 weeks following hospital discharge. Preterm infants face high nutritional risk due to their underdeveloped gastrointestinal systems and feeding coordination. Caregivers of preterm infants were recruited to participate in a weekly telephone survey for the first 4 weeks following the infant's hospital discharge. Responses for infant feeding behaviors and caregiver experiences were scored on a 3-point Likert scale. Growth and feeding data were collected from the infant's first neonatal intensive care unit (NICU) developmental follow-up visit. Twenty-four caregivers completed the study. Changes in feeding regimens were common (8/24 infants; 33%), with the percentage of infants receiving any human milk feedings decreasing from 70% at hospital discharge to 54% at 4 weeks post-discharge. Poor infant feeding skills were weakly associated with poor caregiver feeding experiences, and 46% of caregivers reported contacting their healthcare provider with feeding-related questions. Thirty-eight percent of infants required nutritional intervention at NICU developmental follow-up visit. Infants who received fortified feedings during the first 4 weeks after hospital discharge grew an average of 2.5 g/day faster than infants who did not receive fortified feedings. The postdischarge period for preterm infants is characterized by feeding regimen changes, a decrease in human milk use, and caregiver questions about feeding. Future studies should further investigate the period after hospital discharge to enable better feeding support for preterm infants and their caregivers.

Climate change impacts on child and adolescent health and well-being: A narrative review.

Worldwide, the climate is changing and affecting the health and well-being of children in many ways. In this review, we provided an overview of how climate change-related events may affect child and adolescent health and well-being, including children's mental and physical health, nutrition, safety and security, learning opportunities, and family caregiving and connectedness. In this narrative review, we highlighted and discussed peer-reviewed evidence from 2012-23, primarily from meta-analyses and systematic reviews. The search strategy used a large and varied number of search terms across three academic databases to identify relevant literature. There was consistent evidence across systematic reviews of impact on four themes. Climate-related events are associated with a) increases in posttraumatic stress and other mental health disorders in children and adolescents, b) increases in asthma, respiratory illnesses, diarrheal diseases and vector-borne diseases, c) increases in malnutrition and reduced growth and d) disruptions to responsive caregiving and family functioning, which can be linked to poor caregiver mental health, stress and loss of resources. Evidence of violence against children in climate-related disaster contexts is inconclusive. There is a lack of systematic review evidence on the associations between climate change and children's learning outcomes. Systematic review evidence consistently points to negative associations between climate change and children's physical and mental health, well-being, and family functioning. Yet, much remains unknown about the causal pathways linking climate-change-related events and mental and physical health, responsive relationships and connectedness, nutrition, and learning in children and adolescents. This evidence is urgently needed so that adverse health and other impacts from climate change can be prevented or minimised through well-timed and appropriate action.

Caregiver and Child Mental Health During 3 Years of the COVID-19 Pandemic.

Coronavirus disease 2019 (COVID-19) lockdowns (stay-at-home orders) had significant mental health consequences in 2020 to 2021 for caregivers and children. Little is known about "postlockdown" periods in 2022 to 2023. We investigated the mental health experiences of Australian families throughout the 3 years of the COVID-19 pandemic (2020-2023), by demographic characteristics and lockdown length. A total N = 12 408 caregivers (N = 20 339 children, aged 0-17 years) completed Australia's only representative, repeated, cross-sectional, National Child Health Poll across 6 waves (June 2020-April 2023). Caregivers reported mental health for themselves (Kessler-6, poor versus not) and each child (self-rated mental health, poor/fair versus good/very good/excellent), and perceived impacts of the pandemic on own/child mental health (negative versus none/positive). Binary logistic models were fitted to predict marginal probabilities of each mental health measure by state/territory group (proxy for lockdown length), over time, adjusted for potential demographic confounders. Poor caregiver Kessler-6 was similar between genders but more common for sole caregivers, and those with a home language other than English and lower education. Poor/fair child self-rated mental health was similar between genders and increased with child age. Perceived negative impacts were more common for females and socially advantaged caregivers. Overall, negative mental health experiences increased with lockdown length, peaking with the height of lockdown in July 2021, before declining. Negative mental health experiences of Australian caregivers and children decreased during postlockdown periods of 2022-2023; however, social gradients persisted. These data can inform more precise mental health policies that enable better use of limited mental health infrastructure.

Current practices and challenges of registered dietitians in the nutritional management of children with cerebral palsy in South Africa

Background: Feeding difficulties and subsequent malnutrition are common in children with cerebral palsy (CP). Objectives: A study was undertaken to determine the current practices and challenges of South African registered dietitians (SA RD) regarding the nutritional management of children with CP, to compare these practices with international guidelines and to compare the practices of private- and public-sector dietitians. Design: This was a cross-sectional descriptive study with an analytical component. Subjects and outcome measures: The SA RDs completed an online questionnaire, which was developed according to the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) guidelines. Participant answers were scored to assess their management of children with CP. Results: Of the 87 SA RDs who participated, 78 had work experience in CP (40 public and 38 private sector). Over two-thirds (n = 62/87, 71.2%) received training on the management of CP at university, albeit inadequate (n = 42/62, 67.7%). Common challenges that affect RDs’ management are poor caregiver compliance (n = 72; 92.2%) and poor networking between healthcare professionals (HCPs) (n = 60; 77.0%). The SA RD (n = 78) management of children with CP was significantly different from the ESPGHAN guidelines (p < 0.001). When comparing the total practice score, no significant difference was found between private- and public-sector RDs. The SA RDs did not achieve many of the recommended practices, particularly those pertaining to anthropometry. Conclusions: Improved training of SA RDs in the assessment and management of children with CP, and addressing barriers such as poor caregiver compliance, would enhance SA RDs’ competence to improve the nutritional management of children with CP.

Profiling the medical, functional, cognitive, and psychosocial care needs of adults assessed for home care in Ontario, Canada: The case for long-term 'life care' at home.

Calls to leverage routinely collected data to inform health system improvements have been made. Misalignment between home care services and client needs can result in poor client, caregiver, and system outcomes. To inform development of an integrated model of community-based home care, grounded in a holistic definition of health, comprehensive clinical profiles were created using Ontario, Canada home care assessment data. Retrospective, cross-sectional analyses of 2017-2018 Resident Assessment Instrument Home Care (RAI-HC) assessments (n = 162,523) were completed to group home care clients by service needs and generate comprehensive profiles of each group's dominant medical, functional, cognitive, and psychosocial care needs. Six unique groups were identified, with care profiles representing home care clients living with Geriatric Syndromes, Medical Complexity, Cognitive Impairment and Behaviours, Caregiver Distress and Social Frailty. Depending on group membership, between 51% and 81% of clients had identified care needs spanning four or more Positive Health dimensions, demonstrating both the heterogeneity and complexity of clients served by home care. Comprehensive clinical profiles, developed from routinely collected assessment data, support a future-focused, evidence-informed, and community-engaged approach to research and practice in integrated home-based health and social care.

Increased Care Provision and Caregiver Wellbeing: Moderation by Changes in Social Network Care Provision.

Previous research links increased care provision to worse wellbeing among family and friend caregivers, both before and during the coronavirus disease 2019 (COVID-19) pandemic. We expand on this by incorporating data on caregivers' social networks and exploring the relationships between own and network changes in care during the pandemic and caregiver wellbeing. We use nationally representative data from 1,876 family and friend caregivers in the first wave of our Care Network Connections over Time study (fielded 12/17/2020-1/4/2021) who had provided care continuously since before the COVID-19 pandemic began. Caregivers were asked about the amount of care that they and each member of their social networks were providing at the time of the survey relative to before the pandemic. We use multivariate regression models to examine the associations between five caregiver wellbeing outcomes and changes in care, and explore the moderating role of networks' changes in care. Among caregivers who had provided care since prior to the pandemic, most increased (42.0%) or maintained the same (40.8%) care. Their networks also typically increased (33.4%) or maintained (46.5%) care. Increasing one's own care provision was associated with higher levels of anxiety, depression, loneliness, and emotional difficulty than maintaining stable care. Among those who increased care, these levels were highest when the network also increased or decreased care. Increased care provision was most strongly associated with poor caregiver wellbeing in contexts where caregivers' social networks also changed care provisions. Supports for caregivers undertaking additional care tasks should take into account caregivers' networks.

Using community-based, participatory qualitative research to identify determinants of routine vaccination drop-out for children under 2 in Lilongwe and Mzimba North Districts, Malawi

ObjectiveIn recent years, full childhood routine immunisation coverage has fallen by 5% to levels not seen since 2008; between 2019 and 2021, 67 million children were undervaccinated. We aimed to...

Hospitalized and Hungry: A Mixed Methods Study Assessing Immigrant Caregiver Perspectives on an Inpatient Food Insecurity Intervention.

Inpatient food insecurity (FI), or caregiver inability to obtain adequate food for themselves during child hospitalization, negatively affects caregiver participation in care. Using mixed methods, we assessed inpatient FI prevalence, factors associated with inpatient FI, and perspectives on an inpatient FI intervention among immigrant caregivers (ICs) at a children's hospital from 2021-2022. We performed a sub-analysis of data from a larger FI intervention study, which provided meal trays and food bank public benefit navigator referrals for caregivers screening positive for household or inpatient FI. Logistic regression assessed factors associated with inpatient FI among ICs. We interviewed ICs enrolled in the intervention and identified themes. Of 369 ICs, 56% reported inpatient FI. Low income, poor caregiver health, and household FI were associated with inpatient FI in regression analysis. Nine qualitative interviews revealed positive reception to the intervention. Immigrant caregivers noted that it facilitated participation in care and alleviated financial burden.

EFFECTIVE SOLUTIONS FOR CAREGIVERS OF OLDER ADULTS: A RAPID UMBRELLA REVIEW

Abstract The negative health impacts confronting over 35 million informal caregivers of older adults in the U.S. are well documented. Although targeted interventions aimed at informal caregivers have demonstrated efficacy in mitigating poor caregiver outcomes, gaps in the literature regarding cost, scalability, and the impact of policy remain. Such knowledge is essential, given the projected growth in the need for caregiving associated with a rapidly aging population coupled with the shrinking of the caregiving workforce. This rapid umbrella review aims to synthesize findings from systematic reviews of randomized clinical trials of interventions that targeted caregivers and specified caregiver outcomes. The National Institute on Minority Health and Health Disparities research framework guided this review to identify gaps in existing intervention research. Databases from diverse disciplinary perspectives, including PubMed, Scopus, APA PsycINFO, ABIM, ATLA, Sociological Abstracts, PAIS, and EconLit, were searched from 2018 to 2023. A total of 52 systematic reviews that met inclusion criteria and were published in English were included in the final review. Reviews described interventions targeting caregivers of older adults with the following conditions: dementia (30), stroke (4), cancer (4), heart disease (1), renal disease (1), mental illness (1), and mixed-diagnoses (11). Major findings reveal varied effects on caregiver burden, quality of life, and mental health, and the growing integration of telehealth interventions. Studies were commonly limited by heterogeneity of interventions and outcomes and small effect sizes. Future intervention development should consider targeting the specific needs of diverse caregivers and scaling effective interventions to broader caregiver populations.

FC15: The Baycrest Quick-Response Caregiver Tool TM for Behavioral and Psychological Symptoms of Dementia: Background and mixed methods studies

Goals and Objectives:By the end of the session, participants will be able to: 1.Describe the Baycrest Quick-Response Caregiver Tool2.Describe the role for the Baycrest Quick Response Caregiver Tool in BPSD3.Describe the results of studies to dateObjective:Behavioral and Psychological Symptoms of Dementia (BPSD) are common and are associated with poor outcomes and caregiver burden. A variety of frameworks and tools exist to assess and understand the symptoms and to plan interventions. The Baycrest Quick-Response Caregiver Tool TM (BQRCT) is different than other tools as it assists the caregiver in real time as the BPSD are occurring. A mixed methods feasibility study in family caregivers found favorable results. Scaling up this tool for long term care (LTC) staff can potentially benefit residents living with dementia. The goal of this presentation is for participants to describe this novel tool, its evidence, and its place within the known tools and frameworks for BPSD.Methods:Participants will interactively learn about the BQRCT, how it is applied with caregivers, and how it works with other tools for BPSD. The training videos will be viewed and discussed. The evidence from a mixed methods study of this tool will be presented and compared to evidence for other tools. The methods and preliminary results (if available) for an ongoing study of the BQRCT in the LTC context with be presented.Results:A mixed methods study of family caregivers and health-care providers of persons with dementia and BPSD found that the BQRCT was helpful and participants reported high feasibility ratings. The group of health-care providers found the tool useful and most would recommend it to peers and clients. Participants also provided specific suggestions for improvement, such as including more examples of complex behaviours. The current study in LTC involves the creation of new videos of complex situations in LTC. Participants in LTC homes will complete the online training, and surveys pre/post and at 4 weeks post-intervention. A focus group of a sample of 20 participants will be conducted.Conclusions:The BQRCT complements and works synergistically with existing strategies for managing BPSD. Care teams can use various frameworks and tools flexibly either concurrently or at different times in the episode of care of persons with dementia and BPSD. These tools must address the diversity and personal background of the person with dementia and caregivers.

Self and proxy symptom reporting in patient-caregiver dyads coping with a primary brain tumor: The role of psychosocial function in rating agreement.

223 Background: Patients with glioma experience high levels of symptom burden with often sudden performance declines. As such, family caregivers tend to report on the patient’s symptoms; yet previous research examining the validity of proxy symptom reporting points to inconsistent findings. While prior studies focused on identifying patient clinical variables that may be related to agreement, caregiver characteristics may also be important for accurately perceiving patient symptoms. We examined the associations between symptom agreement and patient and caregiver perceived illness communication, depressive symptoms, and QOL. Methods: As part of a behavioral intervention trial, baseline assessments were collected prior to randomization in 67 dyads. We report on patient symptom burden (MDASI-BT) and patient and caregiver depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Paired t-tests, difference scores and inter-correlations coefficients (ICCs) were used to test for agreement, accuracy and congruence in proxy symptom scores, respectively. Bivariate correlations were calculated to examine the association between psychosocial function variables and symptom agreement. Dyadic level associations between symptom agreement and QOL were examined using multi-level modeling. Results: Thirty-nine percent of patients (63% male; 93% non-Hispanic White; mean age=47 years; 84% Grade III-IV) and 49% of caregivers (79% female; 90% non-Hispanic White; mean age=51 years) endorsed clinical levels of depression. Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for GI symptoms and general symptoms. 22% of caregivers overestimated and 13% underestimated overall symptom severity and 32% overestimated and 21% underestimated symptom interference. ICCs of patient and caregiver proxy ratings were significant (except cognitive and GI subscales) ranging from small to moderate coefficients (.09 - .50). Patient illness communication was associated with agreement in overall symptom severity (r=-.27, p=.03) and affective symptom subscale (r=-.34, p&lt;.01). Caregiver illness communication (r=-.33, p&lt;.01) and depressive symptoms (r=.46, p&lt;.0001) were associated with symptom interference agreement. Caregiver overestimation of patient symptom severity was significantly associated with poor caregiver physical QOL, while underestimation was significantly associated with poor patient physical and mental QOL and poor caregiver mental QOL. Conclusions: The psychosocial context of the family plays an important role in the accuracy of proxy symptom reporting. Moreover, inaccurately understanding patients' experience is related to poor QOL for both patients and caregivers, which points to important targets for symptom management interventions that involve family caregivers.

74 Neurobehavioral Symptoms of Dementia as a Risk Factor for Poor Caregiver Sleep Quality

Objective:Caregivers to persons with dementia (PWD) consistently report lower sleep quality than non-caregiving controls. Low sleep quality, in addition to being unhealthy for the caregiver, may also impact the quality of care provided to the PWD. One factor that may contribute to poor sleep among caregivers is neurobehavioral symptoms (NBS) of the PWD. NBS, such as mood changes, lack of motivation, and disinhibition, are consistently rated as some of the most distressing symptoms by caregivers. Furthermore, they can include some symptoms related to sleep, such as nighttime wandering and REM sleep behaviors. Prior correlational research indicates a very strong association between NBS of the PWD and sleep quality of the caregiver. However, there are third variables, particularly demographics of the caregiver, which may better explain this relationship. When these variables are controlled in research, findings on the association between PWD NBS and caregiver sleep quality are mixed. Thus, we sought to investigate the relation between PWD NBS and caregiver sleep quality while controlling for caregiver demographics.Participants and Methods:Fifty caregivers to PWD completed a survey containing the Mild Behavioral Impairment Checklist as a measure of PWD NBS, the Pittsburgh Sleep Quality Index as a measure of caregiver sleep quality, and caregiver demographics. The relationship between PWD NBS and caregiver sleep quality was assessed using hierarchical linear regression. First, we examined the relationship between caregiver demographics (age, gender, income) and caregiver sleep quality. Second, we added NBS to the model to assess for incremental predictive utility by examining change in R2.Results:A significant correlation was found between PWD NBS and caregiver sleep quality, with higher PWD NBS associated with worse caregiver sleep quality (r(48) = .34, p = .014). A hierarchal regression found that caregiver demographics explained a non-significant proportion of variance in reported caregiver sleep quality (F(3, 44) = 1.05, p = .382, R2 = .07). When PWD NBS was added in model two, there was a significant change in variance explained in the overall model (F(1,43) = 2.65, p = .046, AR2 = .13, R2 = .20). Across both models, PWD NBS was the only variable significantly associated with caregiver sleep quality (B = .08, p = .011).Conclusions:In line with previous studies, these results indicate a moderate relationship between PWD NBS and caregiver sleep quality. Furthermore, findings suggested that PWD NBS is a risk factor for poor caregiver sleep quality, above and beyond caregiver demographic characteristics. Individuals designing interventions aimed at improving caregiver sleep quality should consider including PWD NBS as an intervention target. Future research should replicate these findings in a longitudinal sample to further evaluate causality.