Caregiver Input Research Articles

Cultivating the imagination: Caregiver input during pretend play with toddlers at elevated likelihood for autism.

Toddlers with autism spectrum disorder (ASD) may exhibit less pretend play than their neurotypical counterparts. Previous research suggests that caregivers' input during play influences children's play behavior, and children's behavior may in turn prompt caregivers of differently developing children to talk about play in different ways. Caregiver input about pretend play during toy play at home was examined at 18- and 36-months in toddlers with an older sibling with ASD, who are at elevated likelihood (EL) for ASD (n = 40), and toddlers with typical likelihood (TL) for ASD (n = 12). EL toddlers were classified into three outcome groups: EL-ASD (n = 10), EL-no diagnosis (EL-ND; n = 14), or EL-language delays (EL-LD, n = 16). Caregiver utterances were categorized according to the types of pretend and non-pretend play suggested (e.g., pretending with inanimate objects vs. using objects for their intended function). Pretend utterances were further categorized as related or unrelated to the child's own actions. All caregivers produced proportionately more utterances about complex types of pretend play over time. At 36 months, caregivers of autistic toddlers produced proportionately fewer pretend play utterances, and proportionately fewer pretend play utterances were related to EL-ASD toddlers' actions compared to their neurotypical peers. These findings highlight bidirectional effects between caregivers and toddlers during play. While EL-ASD toddlers may provide less frequent opportunities for caregivers to talk about complex types of pretend play, the current study highlights caregivers' high levels of attunement to their toddlers' play skills.

Conference proceedings: Inaugural meeting of the consortium for autism, genetic neurodevelopmental disorders, and digestive diseases.

Individuals with neurodevelopmental disorders (NDDs), including autism spectrum disorder (ASD), often experience a higher prevalence of gastrointestinal (GI) symptoms but have complex medical and behavioral comorbidities that make diagnosis and treatment difficult. A multi-stakeholder conference was convened to (a) determine patient and family experiences related to GI symptoms in NDDs, (b) review the clinicians' and researchers' perspectives, and (c) determine actionable steps for future research. The Consortium for Autism, Neurodevelopmental Disorders and Digestive Diseases (CANDID; www.candidgi.com) virtually over 2 days in 2022 and consisted of four key activities: (1) an electronic family survey to assess underlying NDDs and GI symptoms, (2) a session focused on family perspectives, (3) review current clinical care and research, and (4) discussion to identify key next steps. Survey results were obtained electronically via the REDCap platform, and descriptive statistics were generated. The sessions were recorded, and themes were identified. The pre-conference survey ran for ~2 months and 739 families provided responses, with 634 completing all items. 83% had a child with an NDD under age 18, and most patients were White (85%) and non-Hispanic (87%). Constipation (80%), gastrointestinal reflux disease (51%), and bloating (49%) were the most frequently reported symptoms. Families gave unstructured feedback that the measures used in the surveys were often difficult to answer for patients with NDDs or who were nonspeaking. Family and clinical/scientific sessions identified several common themes, including (1) the need for less invasive diagnostic modalities, (2) the need to validate or adapt existing diagnostic measures (e.g., the Rome IV criteria) and outcome assessments, and (3) the need for enhanced attention to parent and caregiver input in treatment plans. Those providing care to children with NDDs, especially those with communication and cognitive challenges, should be aware of the differing needs in this community and consider family perspectives in managing, treating, and measuring GI issues. Future research should focus on adapting or creating diagnostic and research measures for those with NDDs, developing new diagnostic methods to account for diversity in neurodevelopment and communication, and improving methods for family and caregiver engagement in the care of GI disorders.

Modelling child comprehension: A case of suffixal passive construction in Korean

The present study investigates a computational model's ability to capture monolingual children's language behaviour during comprehension in Korean, an understudied language in the field. Specifically, we test whether and how two neural network architectures (LSTM, GPT-2) cope with a suffixal passive construction involving verbal morphology and required interpretive procedures (i.e., revising the mapping between thematic roles and case markers) driven by that morphology. To this end, we fine-tune our models via patching (i.e., pre-trained model + caregiver input) and hyperparameter adjustments, and measure their binary classification performance on the test sentences used in a behavioural study manifesting scrambling and omission of sentential components to varying degrees. We find that, while these models’ performance converges with the children's response patterns found in the behavioural study to some extent, the models do not faithfully simulate the children's comprehension behaviour pertaining to the suffixal passive, yielding by-model, by-condition, and by-hyperparameter asymmetries. This points to the limits of the neural networks’ capacity to address child language features. The implications of this study invite subsequent inquiries on the extent to which computational models reveal developmental trajectories of children's linguistic knowledge that have been unveiled through corpus-based or experimental research.

Toward Maximizing Assessment Efficiency: A Synthesized Trial-Based Functional Analysis and Competing Stimulus Assessment.

Despite the success of the standard functional analysis (FA), some limitations to conducting an FA in practice include time, resources, ecological relevance, and safety, which have led to the development of procedural adaptations such as trial-based and synthesized FA formats. The purpose of this case study was to identify the function(s) of self-injurious behavior (SIB) for a 3-year-old female with developmental disabilities using a brief trial-based FA with ecologically relevant synthesized contingencies, based on caregiver input, to minimize opportunities for SIB. We identified that positive physical attention likely functioned, at least in part, as a reinforcer for SIB, in less than 42 min. Overall harm to the child as a result of the synthesized trial-based FA was minimal, and the caregiver viewed the modified conditions favorably. We then assessed the role of competing stimuli on SIB rates with the child's mother and identified two potential items that may compete with attention as a reinforcer for SIB. Our findings highlight the utility and importance of individualized assessment as the first step in the safe treatment of severely challenging behavior.

Infant-directed communication: Examining the many dimensions of everyday caregiver-infant interactions.

Everyday caregiver-infant interactions are dynamic and multidimensional. However, existing research underestimates the dimensionality of infants' experiences, often focusing on one or two communicative signals (e.g., speech alone, or speech and gesture together). Here, we introduce "infant-directed communication" (IDC): the suite of communicative signals from caregivers to infants including speech, action, gesture, emotion, and touch. We recorded 10min of at-home play between 44 caregivers and their 18- to 24-month-old infants from predominantly white, middle-class, English-speaking families in the United States. Interactions were coded for five dimensions of IDC as well as infants' gestures and vocalizations. Most caregivers used all five dimensions of IDC throughout the interaction, and these dimensions frequently overlapped. For example, over 60% of the speech that infants heard was accompanied by one or more non-verbal communicative cues. However, we saw marked variation across caregivers in their use of IDC, likely reflecting tailored communication to the behaviors and abilities of their infant. Moreover, caregivers systematically increased the dimensionality of IDC, using more overlapping cues in response to infant gestures and vocalizations, and more IDC with infants who had smaller vocabularies. Understanding how and when caregivers use all five signals-together and separately-in interactions with infants has the potential to redefine how developmental scientists conceive of infants' communicative environments, and enhance our understanding of the relations between caregiver input and early learning. RESEARCH HIGHLIGHTS: Infants' everyday interactions with caregivers are dynamic and multimodal, but existing research has underestimated the multidimensionality (i.e., the diversity of simultaneously occurring communicative cues) inherent in infant-directed communication. Over 60% of the speech that infants encounter during at-home, free play interactions overlap with one or more of a variety of non-speech communicative cues. The multidimensionality of caregivers' communicative cues increases in response to infants' gestures and vocalizations, providing new information about how infants' own behaviors shape their input. These findings emphasize the importance of understanding how caregivers use a diverse set of communicative behaviors-both separately and together-during everyday interactions with infants.

Efficacy and safety of donepezil in patients with dementia with Lewy bodies: results from a 12-week multicentre, randomised, double-blind, and placebo-controlled phase IV study.

Donepezil has been approved in Japan for the treatment of dementia with Lewy bodies (DLB) based on clinical trials showing its beneficial effects on cognitive impairment. This phase IV study evaluated the efficacy of donepezil by focusing on global clinical status during a 12-week double-blind phase. Patients with probable DLB were randomly assigned to the placebo (n = 79) or 10 mg donepezil (n = 81) groups. The primary endpoint was changes in global clinical status, assessed using the Clinician's Interview-Based Impression of Change plus Caregiver Input (CIBIC-plus). We also assessed four CIBIC-plus domains (general condition, cognitive function, behaviour, and activities of daily living) and changes in cognitive impairment and behavioural and neuropsychiatric symptoms measured using the Mini-Mental State Examination (MMSE) and the Neuropsychiatric Inventory (NPI), respectively. Although donepezil's superiority was not shown in the global clinical status, a significant favourable effect was detected in the cognitive domain (P = 0.006). MMSE scores improved in the donepezil group after adjustments in post hoc analysis (MMSE mean difference, 1.4 (95% confidence interval (CI), 0.42-2.30), P = 0.004). Improvements in NPIs were similar between the groups (NPI-2: -0.2 (95% CI, -1.48 to 1.01), P = 0.710; NPI-10: 0.1 (95% CI, -3.28 to 3.55), P = 0.937). The results support the observation that the efficacy of 10 mg donepezil in improving cognitive function is clinically meaningful in DLB patients. The evaluation of global clinical status might be affected by mild to moderate DLB patients enrolled in this study. No new safety concerns were detected.

Donepezil for dementia with Lewy bodies: meta-analysis of multicentre, randomised, double-blind, placebo-controlled phase II, III, and, IV studies.

Current evidence for the management of symptoms associated with dementia with Lewy bodies (DLB) using donepezil is limited. We conducted a meta-analysis of three randomised controlled trials of donepezil in patients with DLB to investigate the overall efficacy of donepezil on Mini-Mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), and Clinician's Interview-Based Impression of Change-plus Caregiver Input (CIBIC-plus). A meta-analysis was performed using the data of 312 patients administered placebo or 10 mg donepezil. Overall mean score differences for MMSE, NPI-2, and NPI-10 from baseline to week 12 and their 95% confidence intervals (CI) were estimated. For CIBIC-plus, which was transformed from a seven-point grade to a dichotomous outcome (improvements/no improvements), odds ratio (OR) and its 95% CI were estimated. Random-effects models were used, and heterogeneity was evaluated using the Cochrane's Q test and I2 statistic. Heterogeneity was suspected for NPI-2 (P < 0.05; I2 = 87.2%) and NPI-10 (P < 0.05; I2 = 67.7%) while it was not suspected for MMSE (P = 0.23; I2 = 32.4%) and CIBIC-plus (P = 0.26; I2 = 19.8%). The overall mean MMSE score difference (mean difference: 1.50; 95% CI, 0.67-2.34) and the overall odds of improving CIBIC-plus (OR: 2.20; 95% CI, 1.13-4.26) from baseline to week 12 were higher in the donepezil group than in the placebo group. Results of our meta-analysis indicated overall efficacy of donepezil on cognitive impairment and global clinical status in patients with DLB.

Psychological resilience, emotional symptoms, and recovery duration in adolescent sport-related concussion

Objective This study aimed to explore the relation between resilience, emotional changes following injury, and recovery duration in sport-related concussion. Methods Thirty-one high school student-athletes (ages 14–18) with sports-related injuries (concussion, n = 17 orthopedic injury, n = 14) were recruited from a pediatric sports medicine clinic. Participants completed self-report resilience ratings and self- and parent-reported post-concussion symptoms as part of a neuropsychological test battery. Hierarchical regression analyses examined predictors of recovery duration, including: (1) injury group and sex, (2) self- and parent-reported emotional symptom changes, and (3) resilience score. Results Injury group and sex alone were not predictors of recovery duration (p = .60). When parent and patient reported emotional response to injury were added to the analysis, 35% of the variance in length of recovery was explained, making the model statistically significant (F (2.26) = 3.57, p = .019). Including resilience did not reach statistical significance (p = .443). Post hoc analysis revealed parent-report of emotional changes was significantly associated with recovery duration t(31) = 3.16, p < .01), while self-report was not (p = .54). Conclusions Parent-reported emotional change plays a pivotal role in predicting recovery length among adolescents recovering from sport-related concussion and orthopedic injury. These pilot findings highlight the significance of caregiver input in the clinical exam and emphasize the potential for acute interventions supporting psychological resources to enhance recovery outcomes across adolescent sport-related injuries.

Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach. We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus. The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B). Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.

Child-level factors associated with Spanish-English bilingual toddlers' productive vocabulary growth.

This longitudinal study-conducted in the Midwestern United States-examines the child-level factors that promote Spanish-English bilingual toddlers' (n = 47; Mage = 18.80 months; SDage = 0.57) productive vocabulary skills from 18 to 30 months of age. At 6-month intervals, caregivers reported on toddlers' Spanish and English words produced as well as their language exposure at home. Video recordings at child age 18 months yielded estimates of toddlers' speech output (word tokens per minute). In addition, at child age 18 months, caregivers reported on toddlers' linguistic skills (comprehension), demographic background (gender, household income), and nonverbal behaviors (gesture production). Results showed that toddlers were exposed to both English and Spanish and received more Spanish than English from primary caregivers; there were no significant primary caregiver input differences across time. Growth modeling revealed linear growth rates for Spanish and conceptual (Spanish, English combined) vocabulary and a curvilinear trajectory for English vocabulary. Furthermore, toddlers' Spanish and conceptual vocabularies were positively associated with their higher frequencies of token use, greater production of gesture, and greater comprehension skills, even after controlling for input. Moreover, Spanish and conceptual growth rates were positively associated with higher token use. In terms of English, toddlers' vocabulary at child age 18 months was positively associated with their comprehension skills. Toddlers' use of more gestures and tokens as well as gender (boys) influenced their English acceleration rates over time. Findings indicate that unique trajectories exist for each of a bilingual's languages and these trajectories are differentially influenced by child-level factors, including their speech output, not only exposure to language. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Dementia coaching: the missing link in primary care

Introduction: Each Belgian township has inhabitants who suffer from dementia and this prevalence will continue to rise. Not only Belgium but also other European countries are facing this increase.&#x0D; In Belgium, on average 70% of people with dementia are living and receiving care at home.&#x0D; Policy Context And Objective: There are many services available for people with dementia. The organization of these services is however, highly fragmented and difficult to navigate. Additionally, the multidisciplinary integration and coordination is limited.&#x0D; In 2015, the Belgian government approved a plan called “Integrated Care for a better health”, which led to the development of 12 pilot projects that aim to provide high quality care and support to patients through the implementation of different actions. One of these actions in the Waasland regional project aims to target the challenges as described above through the dementia coaching approach. This approach was developed and implemented bottom-up since 2019, with the input of informal caregivers and the Alzheimer’s patient organization.&#x0D; Subsequently, in 2021 a similar approach was developed for people with Parkinson’s disease.&#x0D; Target Population: The action targets people who are diagnosed with dementia, as well as their informal caregivers in the Waasland region. In October 2022, already 216 families have received guidance from one of the regional dementia coaches.&#x0D; Highlights: The dementia coaching approach is a unique initiative that targets coordination of care across organizations. It aims to be the “missing link” through a multidisciplinary coaching team of both self-employed coaches and coaches employed by the different regional health care organizations. Their main task is to assist in navigating the regional health systems and organizations, by house and/ or telephone calls.&#x0D; The regional hospital is an additional partner of the project alongside the primary care organizations.&#x0D; The approach aims to improve the perceived quality of care as well as patient empowerment. The project is continuously evaluated and improved based on its user experiences. The coaches need to follow a mandatory training and participate in peer reviews to ensure that they share a quality-based vision and approach.&#x0D; Since dementia coaching receives state funding for the pay of the coaches, it allows the approach to be offered without additional costs for its users. This improves accessibility of care.&#x0D; &#x0D; Transferability And Conclusion: The dementia coaching approach is already being implemented for people with Parkinson’s disease. The approach shows possibilities to be transferred to other target populations as well (e.g. other chronic diseases) and could be useful for people with comorbidities. This option is currently being explored.&#x0D; Additionally, the approach has the potential to be implemented in other regions and/or countries that are willing to add this missing link.&#x0D; Key words: pilot projects – co-creation – dementia – chronic disease - integrated care&#x0D; &#x0D;

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/.

Laboratory and Bleeding Frequency Changes in Pediatric Patients after Transitioning from Factor VIII to Emicizumab Prophylaxis -Real World Evidence in Patients with Severe Hemophilia a

Background: Emicizumab, a monoclonal antibody which functions as a bypassing agent by bridging activated factor IX and factor X in the absence of normal factor VIII levels, has recently been approved for routine prophylaxis against bleeding episodes in both adults and pediatric patients with hemophilia A. While complete blood counts are typically normal in patients living with hemophilia, it is generally accepted that some patients with unusually heavy bleeding or persistently long bleeds can have low hemoglobin. This anemia may be more common as a previous study revealed that patients with hemophilia had lower that average values for hemoglobin cross all ages and degrees of severity as evidenced by 31% of patients with values less than the third percentile, 46% less that then tenth percentile, and 83% less than the mean value. Real world impact on hemogram in pediatric patients who have been switched to Emicizumab has not been reported in the past after the medication was approved by FDA for hemophilia management. Methods: We performed a retrospective chart review of a cohort of 12 male pediatric patients with hemophilia A who were transitioned from factor VIII to emicizumab prophylaxis between May 2019 and May 2022 to determine changes in laboratory values and bleeding frequencies. Results: Hematologic metricies in severe hemophilia patients pre and post emicizumab switch :Complete blood counts before emicizumab transition revealed a mean hemoglobin 12.8 g/dL (range 10.4-15.7 g/dL), MCV 80.8 fL (range 67.2-99.1 fL), RDW 13.8% (range 11.8-16.6%), and platelets 297 bil/L (range 166-490 bil/L). Following emicizumab initiation, follow up blood counts demonstrated mean hemoglobin 14.8 g/dL (range 12.0-17.1 g/dL), MCV 83.3 fL (range 77.2-95.4 fL), RDW 12.9% (range 12.0-13.9%), and platelets 303 bil/L (range 199-514 bil/L). Mean hemoglobin was noted to have a significant increase after emicizumab was started (P&amp;lt;0.001). Both minor and breakthrough bleeding frequencies were noted to decrease in all patients. Bleeding Frequency and Overall Satisfaction : The patient /caregiver input to assess changes in bleeding frequency was obtained, after stable treatment with emicizumab was tolerated for at least 6 months. The bleeding frequencies of our cohort of patients on FVIII prophylaxis had a wide range with minor bleed frequencies (defined as any joint, soft tissue or other hemorrhage not requiring additional FVIII administration) occurring as often as daily to once yearly. Breakthrough bleeds that required additional episodic FVIII administration occurred 2-3x/monthly to once yearly. Following transition to emicizumab, patients had a reported an overall decrease in bleeding frequencies with minor bleeds averaging from 2x/month previously to never. 3 of these patients had breakthrough bleeding episodes requiring FVIII with 2 episodes attributed to trauma. Overall, patients' parents were asked to give a subjective verbal rating from 1 to 10 of their experience with emicizumab with 1 being worst and 10 being best. The mean verbal rating of our cohort of patients was 9.3. 11 of 12 patients remain of emicizumab prophylaxis as of May 2023 with one patient returning to FVIII prophylaxis due to pain at injection site. Conclusion: An increase in mean hemoglobin concentration in conjunction with reported decreased bleeding frequencies may suggest emicizumab facilitates an overall reduction in prolonged bleeding episodes. At our center, hemophilia A patients transitioned from factor VIII to emicizumab prophylaxis demonstrated a statistically significant increase in hemoglobin concentrations. This data combined with a notable reported decrease in minor and breakthrough bleeding frequencies in all patients suggests an overall reduction in prolonged bleeding episodes. Patients and their families appear to be very satisfied with emicizumab prophylaxis which may promote changes in the standard of care for hemophilia A patients.

Effect of hyperbaric oxygen on symptoms of dementia in patients with delayed encephalopathy after acute carbon monoxide poisoning.

Delayed encephalopathy after acute carbon monoxide poisoning (DEACMP) is the most severe complication of carbon monoxide poisoning, which seriously endangers patients' quality of life. This study aims to investigate the efficacy of hyperbaric oxygen (HBO2) on improving dementia symptoms in patients with DEACMP. A retrospective analysis was performed on DEACMP patients, who visited Xiangya Hospital, Central South University from June 2014 to June 2020. Among them, patients who received conventional drug treatment combined with HBO2 treatment were included in an HBO2 group, while those who only received conventional drug treatment were included in a control group. HBO2 was administered once daily. Patients in the HBO2 group received 6 courses of treatment, with each course consisting of 10 sessions. The Hasegawa Dementia Scale (HDS) was used to diagnose dementia, and the Clinical Dementia Rating (CDR) was used to grade the severity of dementia for DEACMP. The Alzheimer's Disease Assessment Scale-Cognitive Section (ADAS-Cog), the Functional Activities Questionnaire (FAQ), the Neuropsychiatric Inventory (NPI), and the Clinician's Interview-Based Impression of Change-Plus Caregiver Input (CIBIC-Plus) were performed to assess cognitive function, ability to perform activities of daily living (ADL), behavioral and psychological symptoms, and overall function. The study further analyzed the results of objective examinations related to patients' dementia symptoms, including magnetic resonance imaging detection of white matter lesions and abnormal electroencephalogram (EEG). The changes of the above indicators before and after treatment, as well as the differences between the 2 groups after treatment were compared. There was no significant difference in the HDS score and CDR grading between the 2 groups before treatment (both P>0.05). After treatment, the score of ADAS-Cog, FAQ, NPI, and CIBIC Plus grading of the 2 groups were significantly improved, and the improvement of the above indicators in the HBO2 group was greater than that in the control group (all P<0.05). The effective rate of the HBO2 group in treating DEACMP was significantly higher than that of the control group (89.47% vs 65.87%, P<0.05). The objective examination results (white matter lesions and abnormal EEG) showed that the recovery of patients in the HBO2 group was better than that in the control group. Hyperbaric oxygen can significantly relieve the symptoms of dementia in patients with DEACMP.

Transitions from hospital to home: A mixed methods study to evaluate pediatric discharges in Uganda.

The World Health Organization (WHO) Integrated Management of Childhood Illness (IMCI) guidelines recognize the importance of discharge planning to ensure continuation of care at home and appropriate follow-up. However, insufficient attention has been paid to post discharge planning in many hospitals contributing to poor implementation. To understand the reasons for suboptimal discharge, we evaluated the pediatric discharge process from hospital admission through the transition to care within the community in Ugandan hospitals. This mixed methods prospective study enrolled 92 study participants in three phases: patient journey mapping for 32 admitted children under-5 years of age with suspected or proven infection, discharge process mapping with 24 pediatric healthcare workers, and focus group discussions with 36 primary caregivers and fathers of discharged children. Data were descriptively and thematically analyzed. We found that the typical discharge process is often not centered around the needs of the child and family. Discharge planning often does not begin until immediately prior to discharge and generally does not include caregiver input. Discharge education and counselling are generally limited, rarely involves the father, and does not focus significantly on post-discharge care or follow-up. Delays in the discharge process itself occur at multiple points, including while awaiting a physical discharge order and then following a discharge order, mainly with billing or transportation issues. Poor peri-discharge care is a significant barrier to optimizing health outcomes among children in Uganda. Process improvements including initiation of early discharge planning, improved communication between healthcare workers and caregivers, as well as an increased focus on post-discharge care, are key to ensuring safe transitions from facility-based care to home-based care among children recovering from severe illness.

Using Community Engagement Methods to Guide Study Protocol Decisions for School-Aged Children With Type 1 Diabetes.

Many challenges exist in developing multisite protocols for newly diagnosed children with type 1 diabetes. Our research team engaged community members to increase the likelihood of study success during a planning grant for a longitudinal study aimed at understanding risk and protective factors for neurocognitive function in school-aged children newly diagnosed with type 1 diabetes. Two methods were used to obtain caregiver input into study protocol decisions. The first was a survey given to caregivers of children with diabetes (n = 21) about which aspects of the study protocol would make families more or less likely to participate. The second was a Community Engagement (CE) Studio to obtain recommendations from a diverse group of caregivers of children with diabetes (n = 7) on key aspects of recruitment and enrollment. Results from both the survey and the CE Studio indicated that caregivers were interested and willing to participate in a longitudinal study of this nature. Both methods resulted in similar preferences for the type and amount of compensation, convenient study visits, flexible scheduling options, and receipt of neurocognitive test results. Recommendations from the CE Studio included additional strategies to minimize participant burden and enhance communication around study participation. Both the feasibility survey and the CE Studio were useful mechanisms to obtain caregiver input during the study's planning and design phase. Uniquely, the CE Studio approach offers researchers the ability to gain valuable community member input with minimal staff effort.

Adjunctive transcranial direct current stimulation (tDCS) plus sodium benzoate for the treatment of early-phase Alzheimer's disease: A randomized, double-blind, placebo-controlled trial

Previous studies found that an NMDA receptor (NMDAR) enhancer, sodium benzoate, improved cognitive function of patients with early-phase Alzheimer's disease (AD). Transcranial direct current stimulation (tDCS) induces NMDAR-dependent synaptic plasticity and strengthens cognitive function of AD patients. This study aimed to evaluate efficacy and safety of tDCS plus benzoate in early-phase dementia. In this 24-week randomized, double-blind, placebo-controlled trial, 97 patients with early-phase AD received 10-session tDCS during the first 2 weeks. They then took benzoate or placebo for 24 weeks. We assessed the patients using Alzheimer's disease assessment scale - cognitive subscale (ADAS-cog), Clinician's Interview-Based Impression of Change plus Caregiver Input, Mini Mental Status Examination, Alzheimer's disease Cooperative Study scale for ADL in MCI, and a battery of additional cognitive tests. Forty-seven patients received sodium benzoate, and the other 50 placebo. The two treatment groups didn't differ significantly in ADAS-cog or other measures. Addition of benzoate to tDCS didn't get extra benefit or side effect in this study. For more thoroughly studying the potential of combining tDCS with benzoate in the AD treatment, future research should use other study designs, such as longer-term benzoate treatment, adding benzoate in the middle of tDCS trial sessions, or administering benzoate then tDCS.

Diversified caregiver input to upgrade the Young Children’s Participation and Environment Measure for equitable pediatric re/habilitation practice

BackgroundPractitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children’s Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers’ responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design.MethodsCaregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0–3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55–90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds.ResultsEight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001–20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions).ConclusionsResults indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.

Influence of caregiver input and language experience on the production of coda laterals by English-Malay bilingual preschoolers in multi-accent Singapore.

Linguistic input in multi-lingual/-cultural contexts is highly variable. We examined the production of English and Malay laterals by fourteen early bilingual preschoolers in Singapore who were exposed to several allophones of coda laterals: Malay caregivers use predominantly clear-l in English and Malay, but their English coda laterals can also be l-less (vocalised/deleted) and in formal contexts, velarised. Contrastingly, the English coda laterals of the Chinese majority are typically l-less. Findings show that English coda laterals were overall more likely to be l-less than Malay laterals like their caregivers', but English coda laterals produced by children with close Chinese peer(s) were more likely to be l-less than those without. All children produced English coda clear-l, demonstrating the transmission of an ethnic marker that had emerged from long-term contact. In diverse settings, variation is intrinsic to the acquisition process, and input properties and language experience are important considerations in predicting language outcomes.

Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia

BackgroundLewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input. ObjectiveWe assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers’ knowledge, dementia attitudes, and mastery. MethodsUsing community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention. ResultsThirty mentor-mentee pairs completed a median of 15 calls (range: 8–19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors’ LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively). ConclusionsThis LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers. Trial registrationhttps://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.