Caregiver Assessment Research Articles

Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial

BackgroundApproximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136–46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers.MethodsWe will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being.DiscussionTesting the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices.Trial registrationThis trial was registered with ClinicalTrials.gov NCT05849259 in May 2023.

Comparing development-matched and age-matched play targets: A replication and extension.

Previous research has supported selecting development-matched targets rather than age-matched targets to teach play skills to children with autism spectrum disorder. However, few studies have been conducted, and replications and extensions of this research are needed. The current study replicated Pane et al. (2022) by comparing the acquisition of development-matched and age-matched play targets when teaching play skills to four children with autism. No contrived prompts or consequences were used to teach play skills in either condition. Extensions included identifying targets via a newer version of the Developmental Play Assessment, targeting different play categories, assessing additional imitation skills, and conducting a caregiver assessment to identify socially valid toys, play actions, and vocalizations based on each participant's common experiences and preferences as well as their caregiver's values and preferences. As in Pane et al., participants demonstrated a higher level of scripted play actions in the development-matched condition.

Factors associated with family caregiver readiness to care for post-stroke patients after hospital discharge

BackgroundPost-stroke patients often need support from their family caregivers to continue their care after hospital discharge. Family caregiver readiness in caring for stroke patients is needed to improve the patient's quality of life. This study aimed to analyze factors affecting family caregivers' readiness for post-stroke patient care after hospital discharge.MethodsA cross-sectional study of family members of stroke patients admitted to the neurology inpatient unit from February to April 2023, and they were selected through purposive sampling. The general demographic questionnaire, the stroke knowledge questionnaire, and the Family Readiness for Hospital Discharge Scale (FAM-RHDS) were used to gather the data. Data analysis was performed with IBM SPSS 26 software. Data were examined through the descriptive, Pearson correlation, and multiple linear regression tests.ResultsFifty-nine respondents completed the questionnaires. Factors that were significantly related to family readiness to care for stroke patients were age (p = 0.000), gender (p = 0.000), income (p = 0.000), occupation (p = 0.000), marital status (p = 0.000), and knowledge (p = 0.000). Education level was the one that didn’t correlate with family readiness (p = 0.452). Gender is the most dominant factor affecting the readiness of family caregivers to care for stroke patients (coefficient B = 10.847).ConclusionMale family caregivers should be given special attention to improve their readiness to care for post-stroke patients. Assessment of family caregivers’ readiness for discharge should be part of discharge planning and those who are unprepared may be provided with additional interventions prior to discharge.

Educational Needs Assessment for Family Caregivers of Dementia Patients.

People living with dementia are highly dependent on caregivers. We conducted an online survey with regard to caregivers' educational experiences, needs, and expectations. We found that most of the participants lacked educational experiences and expected updated methods through metaverse in virtual reality. Therefore, future studies should verify the effectiveness of education.

Cross-informant agreement between caregivers and teachers for prosocial behavior across child welfare settings

Healthy social functioning has been a growing focus for understanding children’s positive development and well-being. Despite the flexibility and cost-effectiveness of behavior rating scales, there has been a rising issue of concern in both practice and research applications regarding rating scales and its low cross-informant agreement. The present study aimed to analyze the extent to which caregivers and teachers agree about children’s prosocial behaviors, identify whether there were differences in the degree of agreement across child welfare settings, and ultimately offer recommendations for assessing behavior for children involved with child welfare services. To do so, the reports of 1224 children, caregivers, and teachers from the National Survey of Child and Adolescent Well-Being (NSCAW) I who have been investigated by Child Protective Services (CPS) for abuse and/or neglect have been examined. Intra-class correlation coefficients (ICCs) of caregiver and teacher assessment of children’s prosocial functioning were calculated to understand the degree of agreement in their perceptions of children’s prosocial behaviors. ICC values presented show that agreement was low but significant across all samples and subscales (ICC range, 0.11–0.22). It is suggested that future researchers pursue examination of the underlying mechanisms or factors that contribute to informant discrepancies.

Взаимодействие с близким взрослым в замещающих семьях у детей с опытом институционализации в зависимости от типа окружения в доме ребенка и длительности проживания в семье

<p><strong>Background. </strong>To date there is a lack of information in the scientific literature on the influence of children's early institutionalization experience on their interaction with caregivers after their placement in foster care. In order to develop effective early support programs for children and parents in substitute families, it is important to understand the specifics of their interaction, including in connection with children's early experience of interaction with caregivers in baby home and the duration of their living in the substitute family. <strong>Objective. </strong>The study was aimed to investigate the characteristics of interaction of post–institutional parents and children with the experience of living in the baby home (BH) after implementation of changes in the socio–emotional caregiving environment (T+SC) and in a baby home with no intervention (NoI) and care as usual. <strong>Participants. </strong>A total of 18 couples of adults with children from NoI (mean age of children M = 40.7; SD = 20.3 months; 9 boys; mean age of caregivers M=43; SD=7,6) and 42 couples with children from T+SC (mean age M = 38,6; SD = 20 months; 21 boys; mean age of caregivers M=43,9; SD=8,8). <strong>Study design. </strong>Interaction was assessed at 3 stages (in BH before transition to family; <24 months in a post–institutional family (PI family); 25–48 months in the PI family). <strong>Measurements. </strong>Video recordings of free play of dyads were analyzed using the PCERA method (The Parent – Child Early Relational Assessment, R. Clark) to assess caregiver–child interaction. <strong>Results. </strong>The results indicate higher interaction quality in dyads with children who have experience of living in T+SC baby home, compared with children brought up in NoI baby home. In the first 24 months after the transfer of children to post–institutional families (PI) from the T+SC baby home, the quality of interaction between children and parents in the PI families is lower than at the assessment of children and caregivers in the T+SC baby home. An indicator of interaction on the part of children and the indicator of interaction in dyads are higher in the T+SC group then in NoI group after two years of children living in the PI families. <strong>Conclusions. </strong>These results confirm that stable and sensitive socio–emotional early environment (in T+SC) is crucial for establishing relationships and interacting with close adults in a new family. Low quality of caregiver-child interaction – such as low level of sensitivity, involvement and predictability on the part of substitute parents, the lack of reciprocity and regulation of interaction in dyads during the first two years of living in the PI family, as well as low emotional stability and unwillingness to cooperate in children from NoI BH after two years of living in the PI family – is discussed in the terms of need for evidence–based psychological follow–up programs for the PI families with focus on the caregiver–child interaction.</p>

A CHECKLIST-BASED INTERVENTION TO SUPPORT FAMILY CAREGIVERS IN PRIMARY CARE

Abstract Family caregivers commonly accompany older adults to their routine medical visits, but caregivers’ own needs and concerns are not systematically identified or addressed in clinical practice. Collaborative Healthcare Encounters with Caregivers (CHEC) is a checklist-based intervention that uses a prioritization approach to help caregivers efficiently identify and communicate their most salient concerns to primary care providers. This presentation will report findings from a pilot randomized controlled trial of N=37 patient-caregiver dyads who were randomized to CHEC (N=21) or usual care (n=16). The goals of the pilot trial were to evaluate CHEC’s impact on medical visit duration and communication (using time-stamped audio-recordings and a structured coding system) and caregivers’ perceptions of CHEC’s utility (using questionnaires and interviews). Total visit duration was comparable across treatment groups (CHEC: 29.3 minutes vs. UC: 32.8 minutes; p=0.55), but a greater proportion of the visit time was spent addressing caregivers’ concerns among CHEC group participants, as compared to usual care participants (25% vs. 6%; p<.001). In post-visit interviews, caregivers commented that CHEC was useful in helping them to prepare for the visit by thinking about their questions in advance and prompting providers to acknowledge their concerns. Findings from this study explicitly address the RAISE Act’s recommendation for integrating evidence-based caregiver assessment instruments into clinical care delivery (Outcome 2.2) and indicate CHEC’s potential as an efficient, clinically feasible intervention that can support greater inclusion of caregivers in primary care discussions.

A CRITICAL EXAMINATION OF AAA SERVICES AND SUPPORTS FOR CAREGIVERS IN MICHIGAN: POLICY AND PRACTICE IMPLICATIONS

Abstract To identify the service gaps for family caregivers in Michigan, this study examined the perceptions of stakeholders from the 16 area agencies on aging (AAA). An online questionnaire was administered to assess a point-in-time picture of current caregiver assessments and services in 2020. Fifteen AAAs responded to see definitely or probably an increase in the number of caregivers in their catchment areas. Fifteen AAAs currently purchase or contract for respite care services. Fourteen provide some type of direct caregiving resources. Twelve utilize staff to develop and monitor care plans. While some provided caregiver training, none directly provided supportive services. AAAs anticipated rapidly increasing needs for caregiver supports and services. While each provided a different array of services, they anticipated that demand would continue to increase given a rising aging population in Michigan. Results were used to craft a proposal to establish a network of regional caregiver resource centers. Recommendations in the study include creating a task force of stakeholders to identify standardized service definitions, measures and reporting requirements; create a no-wrong-door, multi-prong approach for caregivers to access programs; provide respite care through contracts and referrals to community-based organizations; create a network of trainers to disseminate evidence-based best practices to AAAs and contractors; use untapped resources such as AARP and Alzheimer’s Association; explore forming local healthcare systems and provider collaborations to identify caregivers and triage them. Next steps are to pursue funding from the legislature and other sources to create regional caregiver resource centers across the state.

EXPLORING THE POTENTIAL OF CHATGPT FOR ASSESSING DELIRIUM SYMPTOMS IN OLDER ADULTS WITH COGNITIVE IMPAIRMENT

Abstract Delirium is a common and serious geriatric syndrome, especially in older adults with cognitive impairment. Accurate caregiver assessment and reporting of delirium in community-dwelling older adults can help healthcare providers diagnose and treat delirium more effectively. Yet, caregivers often lack confidence in their ability to accurately assess and report delirium. An automated method to detect the presence and symptoms of delirium could potentially boost caregiver confidence and assist with more accurate delirium assessment and reporting. This study explored the use of ChatGPT, a generative AI based on the Large Language Model (LLM), to detect the presence and symptoms of delirium. We trained ChatGPT using a series of prompts specifically designed to enhance its understanding of the domain knowledge and the scoring mechanism of a caregiver-centered, seven-item delirium assessment, the Sour Seven. The trained ChatGPT model was asked to identify and score various delirium symptoms in five previously validated geriatric case vignettes using the Sour Seven scale. Each case was repeated three times to test for reliability. The ChatGPT assessment results were compared against those of human experts. The preliminary analysis showed that items 3, 6 and 7 were scored correctly in all cases, but mixed results were found on items 1, 2, 4, and 5, mostly because the AI applied a single symptom statement to multiple items. Overall, the results indicate that generative AI has the potential to accurately capture and represent complex delirium symptoms in natural language, which could assist caregivers in accurately identifying and reporting delirium symptoms.

THE NATIONAL STRATEGY TO SUPPORT FAMILY CAREGIVERS: A STATE-LEVEL PERSPECTIVE ON IMPLEMENTATION

Abstract The 2022 National Strategy to Support Family Caregivers includes action steps that a wide range of non-federal organizations, including states, can take to support family caregivers. States have a variety of ways that they can approach supporting family caregiver policy via action steps, including but not limited to strengthening access to services, collaborating among agencies and organizations to coordinate activities, and tracking caregiver data to help ensure services are meeting caregiver needs. Several states are taking the lead in promoting use of caregiver assessment tools. States can monitor whether initiatives and activities are achieving their goals of supporting caregivers and care recipients through tracking the implementation of the state’s actions to support family caregivers. Drawing on the National Academy for State Health Policy’s role in supporting states through its Resource and Dissemination Center, this presentation will highlight ranges of action steps in the National Strategy that states can take to support family caregivers; note frameworks that states can consider using to track implementation of action steps; and highlight states’ initiatives aligning with action steps.

Identify adolescents' help-seeking intention on suicide through self- and caregiver's assessments of psychobehavioral problems: deep clustering of the Tokyo TEEN Cohort study

Psychopathological and behavioral problems in adolescence are highly comorbid, making their developmental trajectories complex and unclear partly due to technical limitations. We aimed to classify these trajectories using deep learning and identify predictors of cluster membership. We conducted a population-based cohort study on 3171 adolescents from three Tokyo municipalities, with 2344 pairs of adolescents and caregivers participating at all four timepoints (ages 10, 12, 14, and 16) from 2012 to 2021. Adolescent psychopathological and behavioral problems were assessed by using self-report questionnaires. Both adolescents and caregivers assessed depression/anxiety and psychotic-like experiences. Caregivers assessed obsession/compulsion, dissociation, sociality problem, hyperactivity/inattention, conduct problem, somatic symptom, and withdrawal. Adolescents assessed desire for slimness, self-harm, and suicidal ideation. These trajectories were clustered with variational deep embedding with recurrence, and predictors were explored using multinomial logistic regression. Five clusters were identified: unaffected (60.5%), minimal problems; internalizing (16.2%), persistent or worsening internalizing problems; discrepant (9.9%), subjective problems overlooked by caregivers; externalizing (9.6%), persistent externalizing problems; and severe (3.9%), chronic severe problems across symptoms. Stronger autistic traits and experience of bullying victimization commonly predicted the four "affected" clusters. The discrepant cluster, showing the highest risks for self-harm and suicidal ideation, was predicted by avoiding help-seeking for depression. The severe cluster predictors included maternal smoking during pregnancy, not bullying others, caregiver's psychological distress, and adolescent's dissatisfaction with family. Approximately 40% of adolescents were classified as "affected" clusters. Proactive societal attention is warranted toward adolescents in the discrepant cluster whose suicidality is overlooked and who have difficulty seeking help. Japan Ministry of Health, Labor and Welfare, Japan Agency for Medical Research and Development, and Japan Science and Technology Agency.

P123: Cognitive Disorders and Impact on Caregivers: The COGCARE Study protocol

Introduction and objectives:Dementia is associated with a high burden of disease, impacting patients, families and society. Nevertheless, related epidemiological data is becoming outdated, given the difficulties of implementing costly and laborious fieldwork surveys. Data is also difficult to retrieve from health and social services’ information systems. Overall, we must improve the feasibility and validity of case definition regarding dementia and the assessment of caregivers’ consequences. The 10/66 Dementia Research Group diagnostic algorithm is a cross-culturally valid method(1). A ‘short 10/66’ was also validated(2), but not in Portugal. We intend to assess its feasibility and validity in Portuguese samples, using REDcap (a browser-based, metadata-driven software) in mobile devices. Additionally, we aim to assess dementia family caregivers’ subjective burden and psychological distress, contrasting primary care and hospital outpatient settings.Methods:A multicentre mixed-methods study will be conducted on fifty dyads of older people with dementia and their caregivers, plus 150 dyads of ‘controls’ and their close family members, as informants. The ‘short 10/66’ will be administered. Dementia caregivers’ assessments include the Zarit Burden Interview and Self-report Questionnaire. Quantitative analyses will estimate the sensitivity and specificity of the ‘short 10/66’ dementia case definition. Semi-structured qualitative interviews will be conducted with participants and research assistants, exploring their experiences with the assessment process; thematic analysis will then be used.Implications:We expect this study to facilitate the diagnosis of dementia and data collection in health/social services on a routine basis, which will potentially improve the feasibility and decrease the costs of epidemiological surveys and allow for prevalence monitoring in Portugal.

Iterative refinement: Developing items to build an assessment of dementia caregivers’ caregiving style

AbstractBackgroundPrior mixed‐methods research has classified 5 distinct dementia caregiving style profiles based on how caregivers vary across 5 domains: understanding of dementia, adaptability, orientation towards oneself vs. the care recipient, emotional expression, and behavioral management. Style profiles have been associated with important care outcomes, yet, for this construct to be useful, it must be measurable. Our study aims to develop the first comprehensive assessment of caregiver cognitive‐behavioral styles for clinical/service utility or self‐assessment.MethodA preliminary item pool of 188 items was developed based on prior research. A literacy review of item content was conducted. Items then went through iterative refinement including: 1) expert review (2 content experts and 1 measurement development expert, with 63 items modified and 66 deleted); 2) cognitive interviews with 7 caregivers (caregivers reviewed each domain’s item set and provided interview feedback on the items, with 4 items modified and 18 deleted); and 3) translatability review for Spanish (review of wording that could impede translation to other languages, with 28 modified and 4 deleted).ResultOur iterative item pool refinement process resulted in 99 items reflective of the 5 domains to be included in psychometric field testing: adaptability (32 items; e.g., I make adjustments to the way I provide care), behavioral management (20 items; e.g., I try to distract the person I care for when they are frustrated), emotional expression (25 items; e.g., I feel positive when it comes to handling caregiving difficulties), understanding (10 items; e.g., I recognize when I need to change how I communicate with the person I care for), and orientation to self or other (12 total; e.g., I do what is best for the person I care for, even at my own expense).ConclusionOur iterative item development process ensures that items developed for a future measure are person‐centered, clear, translatable, and relevant to empirical evidence. The developed items will be field tested among 200 caregivers. This measure is vital to the development of more effective and individualized treatment to enhance caregivers’ ability to support the PLwD, improve outcomes, and reduce the downstream burden of illness and healthcare costs.

P130: Suicide risk after dementia diagnosis - what do we know and what to expect?

Objective:The purpose of this research is to review the association between the dementia diagnosis and suicide risk, to debate what to expect on this topic in the future, and to identify some strategies to control suicide risk after dementia diagnosis.Methods:Non-systematic review of the literature with selection of scientific articles published in the last 10 years, using PUBMED as database and the following keywords: «suicide», «dementia» and «dementia diagnosis». Nine studies were included.Results:Nowadays, suicide account for one million deaths worldwide per year. Suicide rates are up to 8 times higher in the elderly than in general population, in relative numbers. Dementia is an incurable diagnosis and usually result in loss of mental competence. After being diagnosed with dementia, people face emotional challenges and use to feel loss, anger, and uncertainty.Different studies found dementia as an independent risk factor for suicide. Also, some factors that increase the risk for suicide in dementia are described: the existence of psychiatric comorbidity, such as depression, anxiety, psychosis and substance use; The initial stages of dementia, often within three months of diagnosis, because the person perceive a higher threat to his life, with progressive physical and cognitive impairment, increasingly higher levels of dependence and concern on becoming a burden for their family, and, at the same time, preserving intellectual and volitive capacities to plan and carry out suicide; And younger age at dementia diagnosis, with higher difficulties in adjusting to the diagnosis.We are moving towards pre-symptomatic and early dementia diagnosis utilizing biomarkers and genetic tests. This implies that the diagnosis is made in younger people, so concerns have been raised about a potential increase for suicidal behavior.Conclusion:The findings of this research highlight the importance of providing support and paying attention to people with recent dementia diagnosis, particularly in the first year and for patients aged < 75 years. We suggest active management of pre-existing mental disorders, suicide risk evaluation, assessment of patient and caregiver needs and restricting access to lethal means.

Metabolic pathways associated with multi‐morbidity among Black caregivers of persons living with dementia

AbstractBackgroundBlack adults have the highest prevalence of obesity and hypertension, and these multiple chronic conditions increase their risk of morbidity and mortality. Black adults also represent the second largest group of caregivers of persons living with dementia. Gaps exist in our understanding of the physiologic changes associated with multiple chronic conditions in Black caregivers. This study used metabolomics to compare the metabolic profiles of Black caregivers with obesity, with or without hypertension. Our goal was to identify physiologic pathways for targeted interventions to improve morbidity/mortality in this group.MethodHigh‐resolution, untargeted metabolomics assays were run on stored serum samples from Black caregivers (n = 26) with obesity (BMI > = 30kg/m2), among whom 18 also had a diagnosis of hypertension. Linear regression using the xmsPANDA package was employed to identify metabolites differentiating multi‐morbidity. Two‐way hierarchical clustering analysis was used to visualize metabolome‐wide associations with multi‐morbidity. Additionally, metabolic pathways differentially impacted in multi‐morbidity were identified using mummichog.ResultOn average, caregivers were 62.9 (±6.5) years. 88.5% were female and 43% were married. Caregivers had been providing care for about 4.33 (±4) years. A total of 129 metabolites differentiated multi‐morbidity status at a p value < .05. Among these, key metabolic pathways associated with obesity and hypertension were butanoate metabolism and fatty acid activation. Among caregivers with only obesity, metabolites in the butanoate pathway were downregulated, compared to caregivers with both obesity and hypertension. Two exceptions were butyric acid and 2‐hydroxybutyric acid, which were both upregulated in caregivers without multi‐morbidity. In the fatty acid activation pathway, caregivers with only obesity had upregulated metabolites with the exception of icosatrienoic acid and dihomo‐gamma‐linolenic acid, which were down‐regulated.ConclusionIn caregivers with obesity, pathways associated with butanoate metabolism and fatty acid activation significantly differentiated hypertensive status. Healthcare interventions targeting caregiver education on diet/exercise may help optimize fatty acid activation in Black caregivers, thereby helping to reduce their risk of developing multi‐morbidities with hypertension. In addition, expanded health assessment of Black caregivers should be considered, as they may be at high risk for metabolic syndrome due to perturbed fatty acid and butanoate pathway functioning.

Review of Clinical Trials Showing the Efficacy of Memantine in Patients with Alzheimer’s Disease

AbstractBackgroundOver 6 million Americans suffer from Alzheimer’s disease (AD), a neurodegenerative disease characterized by changes in behavior, personality and progressive decline in cognitive function and memory. Therapies may slow the progression and aid in symptomatic relief of AD. One of these is Memantine, an N‐methyl‐D‐aspartate receptor antagonist. The objective of this review is to analyze clinical trials testing the efficacy of Memantine in the treatment of AD.MethodA search for clinical trials was conducted through clinicaltrials.gov with keywords search of “Alzheimer’s disease” and “United States” resulting in a total of 1592 clinical trials. Further inclusion criteria selected included; interventional clinical trial, with results, 65+, phase 4 which led to 23 clinical trials. Four of the 23 clinical trials were selected based upon their commonality of studying the efficacy of the drug Memantine in patients with AD.ResultA clinical trial studied whether Memantine (10mg BID) delayed the progression of driving impairment in participants with mild AD. In the group that received memantine, 100% of participants were able to pass the DriveABLE On‐Road Test at month 12 in contrast to an 83% passing rate in the placebo group. Another clinical trial reported improvements in the ratios of N‐acetylaspartate (NAA) to Creatine (Cr), NAA to choline (Cho), and NAA to myo‐inositol in comparison to baseline. Researchers analyzed the effects of implementing an individualized management program (IMP) and Memantine (10 mg BID) versus Memantine (10 mg BID) alone. Patients in the IMP and Memantine group markedly improved their Clinician Interview‐Based Assessment of Change Plus Caregiver Input Global Score while the Memantine group alone markedly got worse. Patients who took Memantine (10 mg BID) to assess the slowing of behavioral decline were reported to have improved caregiver assessment of behavioral disturbances while the placebo group did not show improvement.ConclusionMemantine may be effective in delaying the progression of driving impairment and behavioral decline. Implementing an IMP plus Memantine showed to have better outcomes than Memantine alone. None of these institutions provided data analysis to determine if data was significant.Reference: Medicine, U. S. N. L. o. (2023). “Clinicaltrials.gov.” Retrieved 01/23/2023, 2023, from https://clinicaltrials.gov/.

Removing Transfusion Dependence As a Barrier to Hospice Enrollment (BRUOG-407)

Background: Patients with hematologic malignancies (HM) receive more aggressive care at the end of life (EOL) and have suboptimal hospice utilization when compared to patients with solid tumors. One reason for this is a high rate of transfusion dependence (TD). Many hospice agencies decline to provide palliative transfusions because of cost, philosophical objections, and/or logistical barriers, and as a result, many TD patients delay hospice enrollment or never enroll at all. In response to a call from ASH for novel care models to address this issue, we designed a pilot study of an open access transfusion model in hospice care. Our hypothesis was that the provision of transfusions for patients with HM on hospice would be feasible and would result in timely hospice referral and less aggressive EOL care. Methods: We conducted a single-center, prospective pilot study [NCT05063591] enrolling adults with aggressive HM who were TD and hospice-eligible. We concurrently enrolled patients' primary caregivers. Patients were evaluated weekly during a clinic visit or telephone call to assess potential symptoms related to anemia or thrombocytopenia. Relevant symptoms triggered a CBC assessment, and, if appropriate, administration of a transfusion of red blood cells (RBCs) and/or platelets. Caregivers completed the Caregiver Evaluation of Quality of EOL Care survey (CEQUEL, Higgins et al. PLoS One, 2013) ≥1 month after the patient death, to assess perception of the patient's EOL care. The primary outcome was feasibility of the care model, defined as 70% rate of successful enrollment after screening. Secondary outcomes included standard EOL care quality measures: hospice length of stay (LOS), inpatient days and ICU days in the last 30 days of life, inpatient deaths, and the use of chemotherapy in the last 14 days of life. Exploratory outcomes included caregiver's assessment of EOL care quality. Results: Of 22 patients and 9 caregivers screened, 10 patients (45%) and 8 caregivers enrolled. 4 screened patients died before consenting. The median patient age was 80 (range, 69-90). Most patients (90%) had a myeloid malignancy (AML, MDS, or CMML). The mean number of transfusions on study was 2.4 units of RBCs (range, 0-9) and 1.2 units of platelets (range, 0-10) ( Figure). The most common transfusion-triggering symptom was fatigue (N=40 transfusion events), followed by shortness of breath (N=15). The median LOS on hospice was 13 days (range, 4-103; Table). 60% of patients spent >9 days on hospice, and no patient spent ≤ 3 days on hospice. All enrolled patients died outside of the hospital: 60% at home and 40% at inpatient hospice. No patient received chemotherapy within 14 days of death, and 1 (10%) was admitted to the ICU within 30 days of death (prior to trial enrollment). There were no disenrollments due to transfusion reactions. One patient (10%) revoked hospice for hospitalization, but re-enrolled and died in inpatient hospice. When caregivers evaluated their loved one's EOL care, 100% reported that the patient experienced a peaceful death; 100% felt that medical intervention did not result in increased suffering; 86% agreed that EOL was not prolonged by medical intervention longer than they would have wished, and 86% felt that the patient suffered much less than expected. The mean CEQUEL score was 24 (range, 20-26, higher scores indicating a better perception of EOL care). Conclusion: Providing blood transfusions to patients with HM on hospice was feasible in our symptom-driven care model. The enrollment rate was short of the 70% goal, but some screened patients died before enrolling, suggesting that hospice was considered too late in the disease course, and that additional factors beyond TD may contribute to suboptimal hospice utilization among these patients. When compared with our population-based study describing EOL outcomes of patients with HM (Egan et al., Blood Adv. 2020), our current outcomes compare favorably, with longer median time on hospice (13 vs 9 days), fewer hospital deaths (0 vs 27%), and less chemotherapy at the EOL (0 vs 13%). Importantly, caregiver perception of EOL care quality was favorable. Our findings illustrate the potential of palliative blood transfusions to improve the EOL care quality for HM patients on hospice, and highlight the need for earlier hospice referral while pursuing care models that address the specific needs of this unique TD population.

Mood assessments of family caregivers of patients with severe brain injury in China.

Long-term care of severe brain injury patients places a significant mental burden on family caregivers, yet few studies have reported the situation in China. We aimed to describe the mood states of family caregivers of patients with severe brain injury and examine the influencing factors that affect caregivers' moods. Cross-sectional survey was used to assess the mood profiles of Chinese family caregivers between February 2019 and February 2020. Demographic data of caregivers and patients, the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder scale (GAD-7) were used to assess the level of depressive and anxiety symptoms. The quality of life score was also assessed by a visual analog scale, and the Coma Recovery Scale-Revised was used to assess the patient's consciousness. One hundred and one patients with severe brain injury (57 unresponsive wakefulness syndrome, UWS) between the age of 14 and 70 and their main family caregivers were enrolled in the study. Most caregivers displayed depressive (n = 62) and anxiety symptoms (n = 65), with 17 and 20 of these family caregivers reporting (moderately) severe depressive symptom and severe anxiety symptom, respectively. The caregiver's depressive symptom level significantly decreased as the patient's injury lasted longer (r = - 0.208, P = 0.037). Moreover, the age of the patient negatively related to the levels of depressive (r = - 0.310, P = 0.002) and anxiety symptoms (r = - 0.289, P = 0.003) in caregivers. There was a significant positive correlation between anxiety and depressive symptoms scores in family caregivers (r = 0.838, P < 0.001). The higher the level of anxiety (r = - 0.273, P = 0.006) and depressive symptoms (r = - 0.265, P = 0.007), the worse the quality of life. Many family caregivers of patients with severe brain injury experience various levels of anxiety and depressive symptoms in China. Tailor-made psychological help seems imperative. Researchers and doctors can provide information about patient's conditions to assist family members in discussing rehabilitation options for patients in different states of consciousness will help to ease anxiety of family caregivers.

Family conflict over illness beliefs and care strategies: implications for burden in family caregivers

Objectives Family conflict is an understudied aspect of the caregiver experience. Drawing from the stress process model, the present study examined the prevalence and correlates of conflict over illness beliefs (e.g. conflict over the care recipient’s illness and need for facility placement) and family care strategies (e.g. lack of involvement and support from family members). Methods Adult child and spouse caregivers (N = 579) of persons with physical or cognitive impairment from clinic and internet samples completed the Caregiver Reaction Scale (CRS) to assess each topic of conflict and burden. Results Most caregivers reported conflict with family members over care strategies (63%) or illness beliefs (55%). Clinic caregivers reported greater illness beliefs conflict than online caregivers. Adult children reported greater illness beliefs and family care strategies than spouses. Male caregivers were more likely than female caregivers to report care strategies conflict. Caregiver overload was significantly associated with family care strategies conflict. Both conflicts were positively associated with caregiver burden. Conclusions Findings further support that family conflict is a widespread concern associated with burden among online and help-seeking caregivers. Caregiving relationship type and gender may increase likelihood of each conflict. Findings inform recommendations for clinical intervention and assessment of family caregivers.

96 Feasibility Trial of a Mobile Health Intervention for Dementia Caregivers

Objective:There are numerous adverse health outcomes associated with dementia caregiving, including increased stress and depression. Caregivers often face time-related, socioeconomic, geographic, and pandemic-related barriers to treatment. Thus, implementing mobile health (mHealth) interventions is one way of increasing caregivers’ access to supportive care. The objective of the current study was to collect data from a 3-month feasibility trial of a multicomponent mHealth intervention for dementia caregivers.Participants and Methods:40 community-dwelling dementia caregivers were randomized to receive the CARE-Well (Caregiver Assessment, Resources, and Education) App or internet links connected to caregiver education, support, and resources. Caregivers were encouraged to use the App or links at least 4 times per week for 3 months. The App consisted of self-assessments, caregiver and stress reduction education, behavior problem management, calendar reminders, and online social support. Caregivers completed measures of burden, depression, and desire to institutionalize at baseline and post-intervention. Feasibility data included App usage, retention and adherence rates, and treatment satisfaction. Data were analyzed via descriptive statistics.Results:Caregivers were mostly white (95%), female (68%), in their mid-60s, (M= 66.38, SD= 10.64), and well-educated (M= 15.52 years, SD= 2.26). Caregivers were mainly spouses (68%) or adult children (30%). Care recipients were diagnosed with mild (60%) or moderate (40%) dementia, with 80% diagnosed as having Alzheimer’s disease. Overall, the study had an 85% retention rate (80% for App group; 90% for links group). 58% of caregivers in the App group were considered high users, using the App &gt;120 minutes over the course of 3 months (M= 362.42, SD= 432.68), and an average of 16.44 days (SD= 15.51). 15% of the sample was non-adherent due to time constraints, disinterest, and/or technology issues. Most participants (75%) using the App were mostly or very satisfied, about 87% would be likely or very likely to seek similar programs in the future, and 93% found the App mostly or very understandable. Groups did not significantly differ on clinical outcomes, although the study was not powered for an efficacy analysis. Within groups analysis revealed significant increases in depressive symptoms at post-treatment for caregivers in both groups.Conclusions:This study demonstrated initial feasibility of the CARE-Well App for dementia caregivers. App use was lower than expected, however, high satisfaction, ease of use, and willingness to use similar programs in the future were endorsed. Some caregivers did not complete the intervention due to caregiving responsibilities, general disinterest, and/or technology issues. Although the study was not designed to assess clinical outcomes, we found that both groups reported higher depressive symptoms at post-treatment. This finding was unexpected and might reflect pandemic-related stress, which has been shown to particularly impact dementia caregivers. Future studies should address the efficacy of multicomponent mHealth interventions for dementia caregivers and the effects of increased dose on clinical outcomes. mHealth interventions should be refined to cater to varying levels of technology literacy among caregivers, and further research should aim to better integrate interventions into caregivers’ routines to enhance treatment engagement.