Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l'Enfant (TGE) study.

OBJECTIVE: To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l'Enfant) longitudinal study. METHODS: Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child's level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, 'objective' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and 'subjective' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). RESULTS: 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all 'subjective' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a 'negative' picture of their child. CONCLUSION: Significant PFC-reported burden 7-years post-injury was associated with overall disability and 'subjective' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.

Benefits of a targeted rehabilitation of number transcoding in secondary acalculia: A single-case experimental design.

BACKGROUND: Despite its potentially significant functional and emotional impact, acalculia is still too rarely assessed and managed by speech and language therapists. Research on the rehabilitation of numerical transcoding remains scarce in the literature and, despite positive results, presents a low level of evidence. AIMS: The present study aims to evaluate the effectiveness of a targeted rehabilitation of numerical transcoding in two patients suffering from a chronic secondary acalculia. METHODS & PROCEDURES: Two post-brain injury females with secondary acalculia took part in a single-case experimental design with multiple baseline across subjects according to a three-phase experimental protocol: baseline involving global cognitive rehabilitation (5-7 measurements with randomized sequential introduction); targeted intervention (10 measurements); follow-up (2 immediate measurements and 1 month after the end of the intervention). Repeated outcome measures consisted of six lists composed of numbers of equivalent difficulty that were used alternately to assess numerical transcoding. We used a reverse digit span as a control measure to assess the specificity of the intervention. Rehabilitation lasted 5 weeks and consisted of errorless learning with colour cues, tables and number-words cards. OUTCOMES & RESULTS: During baseline period involving global cognitive rehabilitation, transcoding scores remained unchanged. In contrast, there was a significant improvement in scores for both patients during the intervention phase targeting transcoding and maintenance of benefits 1-month post-intervention. CONCLUSIONS & IMPLICATIONS: This study demonstrates that a specific rehabilitation targeting numerical transcoding following chronic secondary acalculia can be effective in improving transcoding skills. WHAT THIS PAPER ADDS: What is already known on the subject Transcoding difficulties in patients with acalculia can cause a significant disability in everyday life activities. In secondary acalculia, rehabilitation of cognitive functions associated with number processing (attention, working memory, language) is not sufficient for improvement of transcoding. What this paper adds to existing knowledge An intervention specifically targeting numerical transcoding significantly and durably improves the skills of patients with chronic secondary acalculia. What are the potential or actual clinical implications of this work? Procedural error-free intervention using colour cueing, tables, cards with number-words, copy and repetition seems effective to improve transcoding skills in chronic acalculia.

The 20-item dysexecutive questionnaire after severe traumatic brain injury: Distribution of the total score and its significance.

TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01437683..

Life-Course Brain Health as a Determinant of Late-Life Mental Health: American Association for Geriatric Psychiatry Expert Panel Recommendations.

This position statement of the Expert Panel on Brain Health of the American Association for Geriatric Psychiatry (AAGP) emphasizes the critical role of life course brain health in shaping mental well-being during the later stages of life. Evidence posits that maintaining optimal brain health earlier in life is crucial for preventing and managing brain aging-related disorders such as dementia/cognitive decline, depression, stroke, and anxiety. We advocate for a holistic approach that integrates medical, psychological, and social frameworks with culturally tailored interventions across the lifespan to promote brain health and overall mental well-being in aging adults across all communities. Furthermore, our statement underscores the significance of prevention, early detection, and intervention in identifying cognitive decline, mood changes, and related mental illness. Action should also be taken to understand and address the needs of communities that traditionally have unequal access to preventive health information and services. By implementing culturally relevant and tailored evidence-based practices and advancing research in geriatric psychiatry, behavioral neurology, and geroscience, we can enhance the quality of life for older adults facing the unique challenges of aging. This position statement emphasizes the intrinsic link between brain health and mental health in aging, urging healthcare professionals, policymakers, and a broader society to prioritize comprehensive strategies that safeguard and promote brain health from birth through later years across all communities. The AAGP Expert Panel has the goal of launching further activities in the coming months and years.

Eye movement abnormalities in neurodegenerative langerhans cell histiocytosis.

Langerhans cell histiocytosis (LCH) is a rare inflammatory myeloid neoplasm characterized by proliferation of tumor histiocytes that involves multiple organs including central nervous system. The physiopathologic process underlying degenerative neuro-LCH (i.e., DN-LCH) remains imperfectly settled. Since the main clinical features of DN-LCH are cerebellar ataxia and dysexecutive syndrome, eye movements might be disrupted and may help in disease diagnosis and monitoring. We retrospectively analyzed the medical records of twenty DN-LCH patients investigated using eye movement recording (EMR) in our hospital between 2015 and 2018. DN-LCH patients exhibited (i) abnormal gain in visually guided saccades including hypermetric saccades and excessive gain variability -45.0%-, (ii) increased mean antisaccade error rates -66.7%-, (iii) altered smooth pursuit -50.0%-, and (iv) excessive number of square wave jerks-25%- and gaze-evoked nystagmus. Our study suggests that DN-LCH patients present a peculiar pattern of eye movement impairments supporting cerebellar and prefrontal dysfunctions. As a non-invasive method, EMR could therefore be a useful tool for quantitative monitoring of DN-LCH patients. Further studies are warranted to support our findings.

Alzheimer's disease research progress in the Mediterranean region: The Alzheimer's Association International Conference Satellite Symposium.

As research and services in the Mediterranean region continue to increase, so do opportunities for global collaboration. To support such collaborations, the Alzheimer's Association was due to hold its seventh Alzheimer's Association International Conference Satellite Symposium in Athens, Greece in 2021. Due to the COVID-19 pandemic, the meeting was held virtually, which enabled attendees from around the world to hear about research efforts in Greece and the surrounding Mediterranean countries. Research updates spanned understanding the biology of, treatments for, and care of people with Alzheimer's disease (AD_ and other dementias. Researchers in the Mediterranean region have outlined the local epidemiology of AD and dementia, and have identified regional populations that may expedite genetic studies. Development of biomarkers is expected to aid early and accurate diagnosis. Numerous efforts have been made to develop culturally specific interventions to both reduce risk of dementia, and to improve quality of life for people living with dementia.

Relationships between neuropsychological impairments and functional outcome eight years after severe traumatic brain injury: Results from the PariS-TBI study.

BACKGROUND/OBJECTIVES: The objective was to assess the relationships between neuropsychological impairments, functional outcome and life satisfaction in a longitudinal study of patients after a severe traumatic brain injury (TBI) (PariS-TBI study). PATIENTS: Out of 243 survivors, 86 were evaluated 8 years post-injury. They did not significantly differ from patients lost-to-follow up except for the latter being more frequently students or unemployed before the injury. METHODS: Outcome measures included the Glasgow Outcome Scale-Extended (GOS-E), a functional independence questionnaire, employment, mood, fatigue and satisfaction with life. Neuropsychological outcome was assessed by two ways: performance-based outcome measures, using neuropsychological tests and patient and relative-based measures. RESULTS: Neuropsychological measures were not significantly related to initial injury severity nor to gender, but were significantly related to age and education. After statistical correction for multiple comparisons, cognitive testing and cognitive questionnaires were significantly correlated with most outcome measures. By contrast, satisfaction with life was only related with patient-rated questionnaires. A regression analysis showed that the Trail-Making-Test-A was the best predictor of functional outcome, in addition to education duration. CONCLUSIONS: Cognitive measures, particularly slowed information processing speed, were significant indicators of functional outcome at a long-term post-injury, beyond and above demographics or injury severity measures.

Reduction of Time on the Ground Related to Real-Time Video Detection of Falls in Memory Care Facilities: Observational Study.

BACKGROUND: Lying on the floor for a long period of time has been described as a critical determinant of prognosis following a fall. In addition to fall-related injuries due to the trauma itself, prolonged immobilization on the floor results in a wide range of comorbidities and may double the risk of death in elderly. Thus, reducing the length of Time On the Ground (TOG) in fallers seems crucial in vulnerable individuals with cognitive disorders who cannot get up independently. OBJECTIVE: This study aimed to examine the effect of a new technology called SafelyYou Guardian (SYG) on early post-fall care including reduction of Time Until staff Assistance (TUA) and TOG. METHODS: SYG uses continuous video monitoring, artificial intelligence, secure networks, and customized computer applications to detect and notify caregivers about falls in real time while providing immediate access to video footage of falls. The present observational study was conducted in 6 California memory care facilities where SYG was installed in bedrooms of consenting residents and families. Fall events were video recorded over 10 months. During the baseline installation period (November 2017 to December 2017), SYG video captures of falls were not provided on a regular basis to facility staff review. During a second period (January 2018 to April 2018), video captures were delivered to facility staff on a regular weekly basis. During the third period (May 2018 to August 2018), real-time notification (RTN) of any fall was provided to facility staff. Two digital markers (TUA, TOG) were automatically measured and compared between the baseline period (first 2 months) and the RTN period (last 4 months). The total number of falls including those happening outside of the bedroom (such as common areas and bathrooms) was separately reported by facility staff. RESULTS: A total of 436 falls were recorded in 66 participants suffering from Alzheimer disease or related dementias (mean age 87 years; minimum 65, maximum 104 years). Over 80% of the falls happened in bedrooms, with two-thirds occurring overnight (8 PM to 8 AM). While only 8.1% (22/272) of falls were scored as moderate or severe, fallers were not able to stand up alone in 97.6% (247/253) of the cases. Reductions of 28.3 (CI 19.6-37.1) minutes in TUA and 29.6 (CI 20.3-38.9) minutes in TOG were observed between the baseline and RTN periods. The proportion of fallers with TOG >1 hour fell from 31% (8/26; baseline) to zero events (RTN period). During the RTN period, 76.6% (108/141) of fallers received human staff assistance in less than 10 minutes, and 55.3% (78/141) of them spent less than 10 minutes on the ground. CONCLUSIONS: SYG technology is capable of reducing TOG and TUA while efficiently covering the area (bedroom) and time zone (nighttime) that are at highest risk. After 6 months of SYG monitoring, TOG was reduced by a factor of 3. The drastic reduction of TOG is likely to decrease secondary comorbid complications, improve post-fall prognosis, and reduce health care costs.

Self-awareness four years after severe traumatic brain injury: discordance between the patient's and relative's complaints. Results from the PariS-TBI study.

OBJECTIVE: To evaluate the patient's awareness of his or her difficulties in the chronic phase of severe traumatic brain injury (TBI) and to determine the factors related to poor awareness. DESIGN/SETTING/SUBJECTS: This study was part of a larger prospective inception cohort study of patients with severe TBI in the Parisian region (PariS-TBI study). Intervention/Main measures: Evaluation was carried out at four years and included the Brain Injury Complaint Questionnaire (BICoQ) completed by the patient and his or her relative as well as the evaluation of impairments, disability and quality of life. RESULTS: A total of 90 patient-relative pairs were included. Lack of awareness was measured using the unawareness index that corresponded to the number of discordant results between the patient and relative in the direction of under evaluation of difficulties by the patient. The only significant relationship found with lack of awareness was the subjective burden perceived by the relative (Zarit Burden Inventory) ( r = 0.5; P < 0.00001). There was no significant relationship between lack of awareness and injury severity, pre-injury socio-demographic data, cognitive impairments, mood disorders, functional independence (Barthel index), global disability (Glasgow Outcome Scale), return to work at four years or quality of life (Quality Of Life after Brain Injury scale (QOLIBRI)). CONCLUSION: Lack of awareness four years post severe TBI was not related to the severity of the initial trauma, sociodemographic data, the severity of impairments, limitations of activity and participation, or the patient's quality of life. However, poor awareness did significantly influence the weight of the burden perceived by the relative.

Unsupervised Machine Learning to Identify High Likelihood of Dementia in Population-Based Surveys: Development and Validation Study.

BACKGROUND: Dementia is increasing in prevalence worldwide, yet frequently remains undiagnosed, especially in low- and middle-income countries. Population-based surveys represent an underinvestigated source to identify individuals at risk of dementia. OBJECTIVE: The aim is to identify participants with high likelihood of dementia in population-based surveys without the need of the clinical diagnosis of dementia in a subsample. METHODS: Unsupervised machine learning classification (hierarchical clustering on principal components) was developed in the Health and Retirement Study (HRS; 2002-2003, N=18,165 individuals) and validated in the Survey of Health, Ageing and Retirement in Europe (SHARE; 2010-2012, N=58,202 individuals). RESULTS: Unsupervised machine learning classification identified three clusters in HRS: cluster 1 (n=12,231) without any functional or motor limitations, cluster 2 (N=4841) with walking/climbing limitations, and cluster 3 (N=1093) with both functional and walking/climbing limitations. Comparison of cluster 3 with previously published predicted probabilities of dementia in HRS showed that it identified high likelihood of dementia (probability of dementia >0.95; area under the curve [AUC]=0.91). Removing either cognitive or both cognitive and behavioral measures did not impede accurate classification (AUC=0.91 and AUC=0.90, respectively). Three clusters with similar profiles were identified in SHARE (cluster 1: n=40,223; cluster 2: n=15,644; cluster 3: n=2335). Survival rate of participants from cluster 3 reached 39.2% (n=665 deceased) in HRS and 62.2% (n=811 deceased) in SHARE after a 3.9-year follow-up. Surviving participants from cluster 3 in both cohorts worsened their functional and mobility performance over the same period. CONCLUSIONS: Unsupervised machine learning identifies high likelihood of dementia in population-based surveys, even without cognitive and behavioral measures and without the need of clinical diagnosis of dementia in a subsample of the population. This method could be used to tackle the global challenge of dementia.

The multidimensional burden of informal caregivers in primary malignant brain tumor.

PURPOSE: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective. METHODS: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated. RESULTS: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year). CONCLUSIONS: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

Reduction in Fall Rate in Dementia Managed Care Through Video Incident Review: Pilot Study.

BACKGROUND: Falls of individuals with dementia are frequent, dangerous, and costly. Early detection and access to the history of a fall is crucial for efficient care and secondary prevention in cognitively impaired individuals. However, most falls remain unwitnessed events. Furthermore, understanding why and how a fall occurred is a challenge. Video capture and secure transmission of real-world falls thus stands as a promising assistive tool. OBJECTIVE: The objective of this study was to analyze how continuous video monitoring and review of falls of individuals with dementia can support better quality of care. METHODS: A pilot observational study (July-September 2016) was carried out in a Californian memory care facility. Falls were video-captured (24×7), thanks to 43 wall-mounted cameras (deployed in all common areas and in 10 out of 40 private bedrooms of consenting residents and families). Video review was provided to facility staff, thanks to a customized mobile device app. The outcome measures were the count of residents' falls happening in the video-covered areas, the acceptability of video recording, the analysis of video review, and video replay possibilities for care practice. RESULTS: Over 3 months, 16 falls were video-captured. A drop in fall rate was observed in the last month of the study. Acceptability was good. Video review enabled screening for the severity of falls and fall-related injuries. Video replay enabled identifying cognitive-behavioral deficiencies and environmental circumstances contributing to the fall. This allowed for secondary prevention in high-risk multi-faller individuals and for updated facility care policies regarding a safer living environment for all residents. CONCLUSIONS: Video monitoring offers high potential to support conventional care in memory care facilities.

Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study.

OBJECTIVE: Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative. SETTING: Longitudinal cohort study (metropolitan Paris, France). PARTICIPANTS: Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs. MAIN OUTCOME MEASURES: Informal caregiver objective burden (Resource Utilization in Dementia measuring Informal Care Time [ICT]), subjective burden (Zarit Burden Inventory), monetary self-valuation of ICT (Willingness-to-pay, Willingness-to-accept). RESULTS: Informal caregivers were women (81%) assisting men (80%) of mean age of 37 years. Fifty-five ICs reported no objective burden (ICT = 0) and no/low subjective burden (average Zarit Burden Inventory = 12.1). Forty-three ICs reported a major objective burden (average ICT = 5.6 h/d) and a moderate/severe subjective burden (average Zarit Burden Inventory = 30.3). In multivariate analyses, higher objective burden was associated with poorer Glasgow Outcome Scale-Extended scores, with more severe cognitive disorders (Neurobehavioral Rating Scale-revised) and with no coresidency status; higher subjective burden was associated with poorer Glasgow Outcome Scale-Extended scores, more Neurobehavioral Rating Scale-revised disorders, drug-alcohol abuse, and involvement in litigation. Economic valuation showed that on average, ICs did not value their ICT as free and preferred to pay a mean Willingness-to-pay = &OV0556;17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = &OV0556;12). CONCLUSION: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.

Loss to Follow-Up and Social Background in an Inception Cohort of Patients With Severe Traumatic Brain Injury: Results From the PariS-TBI Study.

OBJECTIVES: To assess determinants of loss to follow-up (FU) at 2 time points of an inception traumatic brain injury (TBI) cohort. DESIGN AND PARTICIPANTS: The PariS-TBI study consecutively included 504 adults with severe TBI on the accident scene (76% male, mean age 42 years, mean Glasgow Coma Scale 5). No exclusion criteria were used. MAIN MEASURE: Loss to FU at 1 and 4 years was defined among survivors as having no outcome data other than survival status. RESULTS: Among 257 1-year survivors, 118 (47%) were lost to FU at 1 year and 98 (40%) at 4 years. Main reasons for loss to FU were impossibility to achieve contact (109 at 1 year, 52 at 4 years) and refusal to participate (respectively 5 and 24). At 1 year, individuals not working preinjury or with nonaccidental traumas were more often lost to FU in univariate and multivariable analyses. At 4 years, loss to FU was significantly associated with preinjury alcohol abuse and unemployment. Relationship with injury severity was not significant. CONCLUSIONS: Socially disadvantaged persons are underrepresented in TBI outcome research. It could result in overestimation of outcome and biased estimates of sociodemographic characteristics' effects. These persons, particularly unemployed individuals, require special attention in clinical practice.

Disability and health-related quality-of-life 4 years after a severe traumatic brain injury: A structural equation modelling analysis.

OBJECTIVES: To assess predictors and indicators of disability and quality-of-life 4 years after severe traumatic brain injury (TBI), using structural equation modelling (SEM). METHODS: The PariS-TBI study is a longitudinal multi-centre inception cohort study of 504 patients with severe TBI. Among 245 survivors, 147 patients were evaluated upon 4-year follow-up, and 85 completed the full assessment. Two outcome measures were analysed separately using SEM: the Glasgow Outcome Scale-extended (GOS-E), to measure disability, and the QOLIBRI, to assess quality-of-life. Four groups of variables were entered in the model: demographics; injury severity; mood and cognitive impairments; somatic impairments. RESULTS: The GOS-E was directly significantly related to mood and cognition, injury severity, and somatic impairments. Age and education had an indirect effect, mediated by mood/cognition or somatic deficiencies. In contrast, the only direct predictor of QOLIBRI was mood and cognition. Age and somatic impairments had an indirect influence on the QOLIBRI. CONCLUSION: Although this study should be considered as explorative, it suggests that disability and quality-of-life were directly influenced by different factors. While disability appeared to result from an interaction of a wide range of factors, quality-of-life was solely directly related to psycho-cognitive factors.

Patterns of post-acute health care utilization after a severe traumatic brain injury: Results from the PariS-TBI cohort.

OBJECTIVE: To assess brain injury services utilization and their determinants using Andersen's model. METHODS: Prospective follow-up of the PariS-TBI inception cohort. Out of 504 adults with severe traumatic brain injury (TBI), 245 survived and 147 received a 4-year outcome assessment (mean age 33 years, 80% men). Provision rates of medical, rehabilitation, social and re-entry services and their relations to patients' characteristics were assessed. RESULTS: Following acute care discharge, 78% of patients received physiotherapy, 61% speech/cognitive therapy, 50% occupational therapy, 41% psychological assistance, 63% specialized medical follow-up, 21% community re-entry assistance. Health-related need factors, in terms of TBI severity, were the main predictors of services. Provision of each therapy was significantly associated with corresponding speech, motor and psychological impairments. However, care provision did not depend on cognitive impairments and cognitive therapy was related to pre-disposing and geographical factors. Community re-entry assistance was provided to younger and more independent patients. CONCLUSIONS: These quantitative findings illustrate strengths and weaknesses of late brain injury care provision in urban France and highlight the need to improve treatment of cognitive impairments.

Ecological validity of the Dysexecutive Questionnaire: Results from the PariS-TBI study.

The Dysexecutive Questionnaire (DEX; Wilson, Pettigrew, & Teasdale, 1998 ) has been designed to assess executive dysfunctions in daily life. However, its relationships with cognitive testing, mood, and the ability to fulfil daily life demands, have not yet been systematically addressed. The objective of this study was to address these issues in a prospective four-year follow-up study of patients with severe traumatic brain injury (TBI) (PariS-TBI study). One hundred and forty seven patients were included. The DEX (self-version) showed a good internal consistency. The total DEX score was significantly inversely correlated with years of education, but did not significantly correlate with any initial injury severity measure. The DEX was significantly and positively related to cognitive deficits, as assessed with the Neurobehavioral Rating Scale-Revised (NRS-R); with mood disorders, as assessed with the Hospital Anxiety and Depression Scale (HADS); with dependency in elementary and extended activities of daily living; and with non-return to work. In multivariate analyses, cognitive and mood impairments were significantly and independently related to the total DEX score. These results suggest that the DEX is a multidetermined sensitive questionnaire to detect everyday life difficulties in patients with severe TBI at a chronic stage.

Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study.

OBJECTIVE: To investigate predictors of informal care burden 1 year after a severe traumatic brain injury (TBI). PARTICIPANTS: Patients (N = 66) aged 15 years or older with severe TBI (Glasgow Coma Scale score of 8 or less) and their primary informal caregivers. SETTING: Multicenter inception cohort study over 22 months in Paris and the surrounding area (PariS-TBI study). MAIN MEASURES: Patients' preinjury characteristics; injury severity data; outcome measures at discharge from intensive care and 1 year after the injury; Dysexecutive Questionnaire; Medical Outcome Study Short Form-36; Zarit Burden Inventory. RESULTS: Among the 257 survivors at discharge from acute care, 66 patient-caregiver couples were included. Primary informal caregivers were predominantly women (73%), of middle age (age, 50 years), supporting male patients (79%), of mean age of 38 years. The majority (56%) of caregivers experienced significant burden, and 44% were at risk of depression. Caregivers' impaired health status and perceived burden significantly correlated with patients' global disability (as assessed with the Glasgow Outcome Scale-Extended) and impairments of executive functions (as assessed with the Dysexecutive Questionnaire). A focused principal component analysis suggested that disability and executive dysfunctions were independent predictors of perceived burden, whereas demographics, injury severity, and Glasgow Outcome Scale at discharge from acute care did not significantly correlate with caregiver's burden. CONCLUSION: Global handicap and impairments of executive functions are independent significant predictors of caregiver burden 1 year after TBI.

Informal care in Huntington's disease: Assessment of objective-subjective burden and its associated risk and protective factors.

BACKGROUND: Because of the genetic transmission of Huntington's disease (HD), informal caregivers (ICs, i.e., non-professional caregivers) might experience consecutive and/or concurrent caregiving roles to support several symptomatic relatives with HD over their life. Additionally, some ICs might be HD carriers. However, whether family burden of care is associated with specific factors in HD remains poorly studied. OBJECTIVE: To provide a quantitative view of the IC burden and identify associated factors. METHODS: This was a cross-sectional assessment of home-dwelling symptomatic HD individuals (from REGISTRY and Bio-HD studies) and their primary adult ICs, including the HD individual's motor, cognitive, behavioral, functional Unified Huntington's Disease Rating Scale score; IC objective burden (quantification of IC time in activities of daily living, instrumental activities of daily living and supervision, using the Resource Utilization in Dementia instrument), IC subjective burden (Zarit Burden Inventory), and ICs' social economic functioning and use of professional home care. RESULTS: We included 80 ICs (mean [SD] age 57 [12.9] years, 60% women) in charge of 80 individuals with early to advanced stage HD (mean age 56 [12.6] years, 51% men). The mean hours of informal care time was high: 7.3 (7.9) h/day (range 0-24); the mean professional home care was 2.8 (2.8) h/day (range 0.1-12.3). This objective burden increased with higher functional loss of the HD individual and with more severe cognitive-behavioral disorders. The mean subjective burden (35.4 [17.8], range 4-73) showed a high level since the earliest stage of HD; it was associated with HD duration (mean 9.2 [4.7] years) and with aggressive symptoms in individuals (44% of cases). The burden was partially related to the multiplex caregiving status (19%). Protective factors lowering the IC burden included the absence of financial hardship (57%), a strong social network (16%) and keeping active on the job market outside home (46%). CONCLUSIONS: The objective-subjective burden of ICs related to changing patterns of neuro-psychiatric symptoms and mitigating environmental characteristics around the HD individual-caregiver dyads.

Identification of high likelihood of dementia in population-based surveys using unsupervised clustering: a longitudinal analysis.

BACKGROUND: Dementia is defined as a cognitive decline that affects functional status. Longitudinal ageing surveys often lack a clinical diagnosis of dementia though measure cognition and daily function over time. We used unsupervised machine learning and longitudinal data to identify transition to probable dementia. METHODS: Multiple Factor Analysis was applied to longitudinal function and cognitive data of 15,278 baseline participants (aged 50 years and more) from the Survey of Health, Ageing, and Retirement in Europe (SHARE) (waves 1, 2 and 4-7, between 2004 and 2017). Hierarchical Clustering on Principal Components discriminated three clusters at each wave. We estimated probable or "Likely Dementia" prevalence by sex and age, and assessed whether dementia risk factors increased the risk of being assigned probable dementia status using multistate models. Next, we compared the "Likely Dementia" cluster with self-reported dementia status and replicated our findings in the English Longitudinal Study of Ageing (ELSA) cohort (waves 1-9, between 2002 and 2019, 7840 participants at baseline). RESULTS: Our algorithm identified a higher number of probable dementia cases compared with self-reported cases and showed good discriminative power across all waves (AUC ranged from 0.754 [0.722-0.787] to 0.830 [0.800-0.861]). "Likely Dementia" status was more prevalent in older people, displayed a 2:1 female/male ratio, and was associated with nine factors that increased risk of transition to dementia: low education, hearing loss, hypertension, drinking, smoking, depression, social isolation, physical inactivity, diabetes, and obesity. Results were replicated in ELSA cohort with good accuracy. CONCLUSIONS: Machine learning clustering can be used to study dementia determinants and outcomes in longitudinal population ageing surveys in which dementia clinical diagnosis is lacking.