Family members' experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence.

BACKGROUND: Most research on family members' experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members' experiences of the pre-diagnostic phase of dementia to inform clinical practice. METHODS: We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search. RESULTS: An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members' experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others. CONCLUSIONS: Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.

Social and behavioral outcomes: pre-injury to six months following childhood traumatic brain injury.

This study aimed to extend the limited research investigating social and behavioral outcomes following childhood traumatic brain injury (TBI). The study compared pre-and post-injury measures of these skills and investigated the role of pre-injury child status and pre-injury family functioning in the prediction of outcome at six months post-injury. A secondary aim was to compare rates of impairment at six months post-injury between children post-TBI and a typically developing (TD) control group. This study comprised 140 children, 97 survivors of TBI (67 males) and 43 TD children (24 males), matched for age, sex, and socio-economic status. All participants were ascertained between 2007 and 2010, and were between ages 5.5 and 15.0 years. Children with TBI represented consecutive hospital admissions and were recruited at time of injury into a longitudinal study. TD children were recruited from the community, through local schools chosen to provide a range of socio-economic backgrounds. Findings indicated a deterioration of social participation skills post-injury, particularly for those sustaining a more severe injury, and a consistently higher rate of impairment in social and behavioral outcomes in the TBI group. Pre-injury function, injury severity and restrictions to social participation (e.g., reduced sport activities) as recommended by clinicians contributed significantly to outcome. Difficulties are evident in the short-term post-childhood TBI in social and behavioral domains. It is essential to monitor children long-term, particularly as societal expectations and demands increase.

Relationships between acute imaging biomarkers and theory of mind impairment in post-acute pediatric traumatic brain injury: A prospective analysis using susceptibility weighted imaging (SWI).

Theory of Mind (ToM) forms an integral component of socially skilled behavior, and is critical for attaining developmentally appropriate goals. The protracted development of ToM is mediated by increasing connectivity between regions of the anatomically distributed 'mentalizing network', and may be vulnerable to disruption from pediatric traumatic brain injury (TBI). The present study aimed to evaluate the post-acute effects of TBI on first-order ToM, and examine relations between ToM and both local and global indices of macrostructural damage detected using susceptibility-weighted imaging (SWI). 104 children and adolescents with TBI and 43 age-matched typically developing (TD) controls underwent magnetic resonance imaging including a susceptibility-weighted imaging (SWI) sequence 2-8 weeks post-injury and were assessed on cognitive ToM tasks at 6-months after injury. Compared to TD controls and children with mild-moderate injuries, children with severe TBI showed significantly poorer ToM. Moreover, impairments in ToM were related to diffuse neuropathology, and parietal lobe lesions. Our findings support the vulnerability of the immature social brain network to disruption from TBI, and suggest that global macrostructural damage commonly associated with traumatic axonal injury (TAI) may contribute to structural disconnection of anatomically distributed regions that underlie ToM. This study suggests that SWI may be a valuable imaging biomarker to predict outcome and recovery of social cognition after pediatric TBI.

Cavum septum pellucidum in pediatric traumatic brain injury.

The cavum septum pellucidum (CSP) is a fluid-filled cavity in the thin midline structure of the septum pellucidum. The CSP has been linked to several neurodevelopmental disorders, but it also occurs as a result of head injury. The aims were to assess the presence and characterization of the CSP in youth with traumatic brain injury (TBI), to assess whether injury severity or IQ measures were related to CSP size, and to examine brain morphometry changes associated with the CSP size. Ninety-eight survivors of TBI and 34 control children underwent magnetic resonance imaging (MRI). Numerous methods were used to define the presence and characterization of the CSP including length, classification of abnormally large CSP, rating of the CSP, and volume. There was no difference in presence of CSP between TBI patients and controls; however, there was larger and more severely graded CSP in the patient group. Size of the CSP correlated positively with injury severity, and regions that correlated most significantly with CSP size were the right entorhinal cortex and bilateral hippocampus. Characterizing the CSP and related brain changes may provide important information concerning disturbances seen after a TBI.

Frontotemporal Dementia Differential Diagnosis in Clinical Practice: A Single-Center Retrospective Review of Frontal Behavioral Referrals.

Background and Objectives: Many neurodegenerative syndromes present with impairment of frontal networks, especially frontoinsular networks affecting social and emotional cognition. People presenting with frontal network impairments may be considered for a frontotemporal dementia (FTD) diagnosis. We sought to examine the diagnostic mix of patients referred with frontal network impairments to a single cognitive neurology service. Methods: A retrospective review was conducted of all patients seen between January 2010 and December 2019 at the Eastern Cognitive Disorders Clinic, a quaternary cognitive neurology clinic in Melbourne, Australia. Patients were included if they met the following criteria: (1) were referred for suspected FTD or with a preexisting diagnosis of a FTD syndrome, (2) were referred for 'frontal behaviors' (i.e., disinhibition, disorganization, poor judgment, loss of empathy, apathy) and/or had an informant report of behavior change, and (3) had available referral documents and clinical consensus diagnosis. Referral diagnosis was compared against final diagnosis adjudicated by a consensus multidisciplinary team. Case details including age of symptom onset, Cambridge Behavioural Inventory-Revised scores, psychiatric history, and Charlson Comorbidity Index were compared against the final diagnosis. Results: In total, 161 patients aged 42-82 years (mean = 64.5, SD = 9.0; 74.5% men) met inclusion criteria. The commonest final diagnosis was a FTD syndrome (44.6%: 26.7% behavioral variant FTD (bvFTD), 9.3% progressive supranuclear palsy, 6.2% semantic dementia, 1.2% corticobasal syndrome, and 1.2% FTD/motor neuron disease). A primary psychiatric disorder (PPD) was the next commonest diagnosis (15.5%), followed by vascular cognitive impairment (VCI, 10.6%), Alzheimer disease (AD, 9.9%), and other neurologic diagnoses (6.2%). A final diagnosis of bvFTD was associated with higher rates of medical comorbidities and more eating behavior abnormalities compared with a diagnosis of PPD. Screening cognitive tests and preexisting psychiatric history did not distinguish these 2 groups. Discussion: A broad spectrum of neurologic and psychiatric disorders may present with impairments to frontal networks. Almost half of patients referred had a final FTD syndrome diagnosis, with bvFTD the commonest final diagnosis. People with PPD, VCI, and AD present with similar clinical profiles but are distinguishable using MRI and FDG-PET imaging. Medical and psychiatric comorbidities are common in people with bvFTD.