Sheilla de Medeiros Correia Marin

INTRODUCTION: Alzheimer's disease is an increasingly critical public health concern in aging populations. Characterized by progressive impairments, it can lead to dementia and significant dependence on family caregivers, who often face cognitive and behavioral challenges and heightened health risks. The study investigates the demands and unmet needs of these family caregivers using an electronic data‐capture approach. METHODS: This observational, descriptive, cross‐sectional study was conducted in Brazil from February 2022 to January 2023. Non‐professional dementia caregivers were surveyed through asynchronous digital data collection. A novel, context‐specific questionnaire developed by an interdisciplinary expert group was administered, and a subset of randomly selected caregivers participated in focused interviews to enhance data quality. RESULTS: Of 711 potential participants screened, 381 completed the questionnaire (53% response rate). Among them, 311 (82%) identified as non‐professional caregivers. The results indicate that these caregivers often feel unprepared (46%), may have a negative self‐perception of their role (39%), but also may feel rewarded with being a caregiver (44%). The primary needs expressed included additional assistance from others (87%) and emotional support (62%). DISCUSSION: Findings indicate that care responsibilities were predominantly assumed by middle‐aged female relatives, primarily in unpaid roles, with many providing more than 8 hours of direct care daily. A substantial proportion left their jobs to fulfill caregiving duties, underscoring the urgency of implementing policies that address the extensive needs of individuals with dementia and their caregivers. Given the complexity of dementia, public policies should be informed by rigorous situational analysis and delivered through targeted social, health, and educational programs that equip caregivers with effective management strategies and technologies while enhancing personalized emotional support systems. Highlights: Lack of preparedness: Brazilian family caregivers often feel unprepared for their responsibilities (33%), which may lead to negative self‐satisfaction with their role as caregivers (38%). Employment impact: Nearly half of the respondents (43%) had to quit their jobs to take on caregiving responsibilities, and the vast majority (95%) did so without receiving any monetary compensation. Need for support: Major complaints from family caregivers include an often unmet need for help from others (57%) and the emotionally tiring routine of caregiving (85%). Duration of caregiving: The length of caregiving varied among participants, with 25% providing care for over 6 years. This highlights the long‐term commitment often required in dementia cases.

Background: Swallowing and feeding problems may occur with the progression of behavioral variant frontotemporal dementia (bvFTD) and can impair the anticipatory and oral preparatory phases of swallowing. Objective: To characterize swallowing problems and the feeding situation of patients with bvFTD and to correlate the swallowing problems with functionality, executive functions, cognitive and behavioral features. Methods: Consecutive outpatients with bvFTD in mild, moderate and severe dementia stages were recruited along with their caregivers. Patients and caregivers were screened with the following scales: “Mini-Mental State Examination”, “Severe Mini-Mental State Examination”, “FTLD-modified Clinical Dementia Rating”, “Neuropsychiatric Inventory”, “Frontal Assessment Battery”, “Index of Independence in Activities of Daily Living”, “Swallowing Rating Scale” and “Assessment of Feeding and Swallowing Difficulties in Dementia”. Results: Overall, thirty patients with bvFTD were included along with their caregivers. Patients with bvFTD showed feeding and swallowing difficulties such as: messy to eat, passivity, coughing and choking, difficulty with some food consistencies and with specific food. Swallowing problems in bvFTD correlated with impaired functionality (p<0.05) and cognition (p<0.05), executive dysfunction (p<0.01) and behavioral features (p<0.01). Caregivers had great difficulty in managing the feeding situation during mealtime, with different characteristics in each dementia stage. Conclusion: Patients with bvFTD had inappropriate speed eating, passivity, coughing and choking starting in the mild dementia stage, and these problems worsen in the severe stage. Such difficulties affected caregiver performance during mealtime. The correlations indicated that swallowing difficulties tend to follow cognitive and behavioral decline in patients with bvFTD.

Background Lewy body dementia (LBD) impairs performance in daily activities and affects motor, language and visuospatial tasks. Objective We aimed to correlate neuropsychiatric and motor assessments with language and visual organization tests in LBD. Methods Twenty-two patients with dementia with Lewy bodies and ten patients with Parkinson’s disease dementia participated on a cross-sectional study that assessed cognition, functionality, caregiver burden, verbal fluency, the primer-level dictation section of the Boston Diagnostic Aphasia Examination (PLD-BDAE), the Hooper Visual Organization Test, the Neuropsychiatric Inventory and the Movement Disorder Society – Unified Parkinson’s Disease Rating Scale. Results Language and visuospatial test results followed motor impairment and general cognitive performance. Whereas visual organization did not predict performance in the PLD-BDAE, visuospatial abilities and verbal fluency were concurrently associated, suggesting that linguistic impairment in LBD may be attributed to neuropsychological components of cognition and language. Only visual organization was associated with behaviour, suggesting that neuropsychiatric symptoms associate with differential impairment of visual organization in comparison with language in LBD. Schooling did not affect visual organization or language test performance, while the length of dementia was negatively associated with visual organization and verbal fluency. Discussion Though visual organization tests follow behaviour and motor performance in LBD, there is differential impairment regarding language skills.

BACKGROUND: Few studies have described characteristics of swallowing in primary progressive aphasia (PPA) and its variants. OBJECTIVE: To describe and characterize swallowing and eating behaviors of patients with PPA, as well as their correlates with neuropsychiatric symptoms and patterns of communication. METHODS: We studied 16 patients with PPA and 16 their caregivers. PPA was subdivided in agrammatic variant (PPA-G), semantic variant (PPA-S) and logopenic variant (PPA-L). All patients and their caregivers were screened with the following scales: “Assessment of Feeding and Swallowing Difficulties in Dementia”, “Neuropsychiatric Inventory”, and “Functional Outcome Questionnaire for Aphasia”. RESULTS: Patients with PPA-S had diverse swallowing problems such as drooling of saliva or food, multiple swallows, delayed swallow and choking, all of which correlated with anxiety, apathy and aberrant motor behavior. Patients with PPA-G and PPA-L had choking and delayed swallow, respectively. Disturbances in eating behaviors were more frequent in the group with PPA-L, and they correlated with difficulties in patterns of communication. CONCLUSIONS: All variants showed swallowing difficulties and they were more frequent in PPA-S. Further studies with larger samples of patients are needed to better characterize swallowing problems and their consequences in the different variants of PPA.

Introdução: A deglutição e suas características principais ainda são desconhecidas na demência frontotemporal. Objetivos: Caracterizar a deglutição e o comportamento alimentar de pacientes com diagnóstico...

Neuropsychiatric and epidemiological patterns may compensate for insufficient specificity of diagnostic criteria of Lewy body dementia (LBD) syndromes in differential analysis with Alzheimer disease (AD) dementia. We aimed to compare and distinguish demographic and neuropsychiatric features between LBD and APOE-ε3/ε3 late-onset AD. A total of 39 consecutive patients with Parkinson disease dementia or dementia with Lewy bodies were matched with 39 APOE-ε3/ε3 patients with late-onset AD according to sex and Mini-Mental State Examination scores, and evaluated for education, age at disease onset, lifetime sanitary conditions, anthropometric measures, alcohol use, smoking, history of head trauma or bacterial infections, family history of neurodegenerative diseases, caregiver burden, functional independence, cognitive decline, neuropsychiatric symptoms, and pharmacological treatment. Family history of parkinsonism and worse motor performance were more prevalent in Parkinson disease dementia, also impacting sleep satisfaction and physical self-maintenance. Patients with AD had higher systolic blood pressure, were more independent, and had better performance in visuospatial tasks and calculations, whereas patients with LBD were more oriented and previously lived longer in rural areas without sanitation. Among neuropsychiatric symptoms, hallucinations, apathy, dysphoria, anxiety, and aberrant motor behavior were the most significant for discrimination amidst dementia diagnoses. Functional performance, visuospatial skills, and behavioral symptoms are helpful for differential diagnoses between LBD and AD. Cerebrovascular risk might be more important for AD pathogenesis, whereas environmental factors might impact development of LBD.

Objective Besides significant cognitive decline, patients in later stages of Alzheimer's disease (AD) also present global functional impairment, usually reported by their caregivers. This study searched for preserved activities of daily living by investigating correlations among specific instruments for severe dementia with a performance-based functional scale. Method A sample of 95 moderate to severe AD patients and their caregivers underwent a neuropsychological battery consisting of screening tools, the Functional Assessment Staging Test (FAST), the Severe Mini-Mental State Examination (MMSEsev) and a performance-based ecological scale, the Performance Test of Activities of Daily Living (PADL). Results Consistent findings emerged from the comparisons among tests. PADL showed significant statistical correlation with MMSEsev (ρ

Cognitive assessment in advanced stages of Alzheimer’s disease (AD) is limited by the imprecision of most instruments. Objective: To determine objective cognitive responses in moderate and severe AD patients by way of the Severe Mini-Mental State Examination (SMMSE), and to correlate performances with Mini-Mental State Examination (MMSE) scores. Method: Consecutive outpatients in moderate and severe stages of AD (Clinical Dementia Rating 2.0 or 3.0) were evaluated and compared according to MMSE and SMMSE scores. Results: Overall 400 patients were included, 67.5% females, mean age 76.6±6.7 years-old. There was no significant impact of age or gender over MMSE or SMMSE scores. Mean schooling was 4.4±2.5 years, impacting SMMSE scores (p=0.008). Scores on MMSE and SMMSE were significantly correlated (F-ratio=690.6325, p<0.0001). Conclusion: The SMMSE is influenced by schooling, but not by age or gender, and is an accurate test for assessment of moderate and severe AD.