scholarly journals Determinants of Caregiver Burden in Early-Onset Dementia

2021 ◽  
pp. 189-197
Author(s):  
Annalisa Chiari ◽  
Barbara Pistoresi ◽  
Chiara Galli ◽  
Manuela Tondelli ◽  
Giulia Vinceti ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Caregiver Burden ◽  
Financial Distress ◽  
Early Onset ◽  
Disease Duration ◽  
Economic Status ◽  
Diagnostic Delay ◽  
Early Onset Dementia ◽  
Spousal Relationship ◽  
Status Data

<b><i>Introduction:</i></b> Caregivers of patients with early-onset dementia (EOD) experience high levels of burden, which is known to be affected by caregivers’ psychological features as well as by patients’ and caregivers’ demographical and social variables. Although potential clinical, demographical, and social determinants have been separately examined, it is not known how they reciprocally interact. <b><i>Methods:</i></b> Ninety-two consecutive patient-caregiver dyads were recruited from the Cognitive Neurology Clinics of Modena, Northern Italy. Caregivers were asked to fill in questionnaires regarding their burden, psychological distress, and family economic status. Data were analyzed with multivariable regression models and then entered in a mediation model. <b><i>Results:</i></b> Caregiver burden was positively related to female caregiver sex, spousal relationship to the patient, severity of patient’s behavioral symptoms, diagnostic delay, and financial distress of the family. It was negatively related to disease duration, patient’s education, region of birth, caregiver age, number of caregiver’s days off work, number of offspring, and caregiver perception of patient’s quality of life. While the effect of caregiver age, diagnostic delay, and of proxies of family or social network directly impacted on caregiver’s burden, the effect of patient’s disease duration, being a wife caregiver, financial distress, and number of caregiver’s days off work was entirely mediated by the level of caregiver psychological distress. <b><i>Conclusions:</i></b> Both direct actions (such as increasing social networks and shortening diagnostic delay) and indirect actions aimed at reducing psychological distress (such as increasing the number of caregiver’s days off work and financial support) should be planned to reduce caregiver’s burden.

scholarly journals Choriocapillaris Changes Are Correlated With Disease Duration and MoCA Score in Early-Onset Dementia

2021 ◽  
Vol 13 ◽  
Author(s):  
Shuting Zhang ◽  
William Robert Kwapong ◽  
Tang Yang ◽  
Peng Liu ◽  
Qingzhang Tuo ◽  
...  
Keyword(s):  
Early Onset ◽  
Cognitive Assessment ◽  
Disease Duration ◽  
Capillary Flow ◽  
Flow Density ◽  
Healthy Controls ◽  
Clinical Trial Registration ◽  
Cross Sectional ◽  
Early Onset Dementia

Purpose: Imaging of the choroid may detect the microvascular changes associated with early-onset dementia (EOD) and may represent an indicator for detection of the disease. We aimed to analyze the in vivo choriocapillaris (CC) flow density in EOD patients using optical coherence tomography angiography (OCTA) and evaluate the association with its clinical measures.Methods: This cross-sectional study used the OCTA to image and analyze the choriocapillaris (CC) of 25 EOD patients and 20 healthy controls. Choriocapillaris flow density in the 3 mm area and 6 mm area was measured by an inbuilt algorithm in the OCT tool. Brain volume using magnetic resonance imaging and cognitive assessment was done and recorded.Results: Significantly reduced capillary flow density of the choriocapillaris was seen in EOD patients when compared to healthy controls in the 3.0 mm (P = 0.001) and 6.0 mm (P &lt; 0.001) area respectively. Montreal Cognitive Assessment (MoCA) scores in EOD patients positively correlated with choriocapillaris flow density in the 3 mm area (Rho = 0.466, P = 0.021). Disease duration of EOD patients also negatively correlated with choriocapillaris density in the 3 mm area (Rho = −0.497, P = 0.008).Discussion: Our report suggests that choriocapillaris damage may be a potential indicator of early-onset dementia. Microvascular impairment may be involved in the early phase of dementia without aging playing a role in its impairment.Clinical Trial Registration: www.ClinicalTrials.gov, ChiCTR2000041386.

scholarly journals Determinants of caregiver burden in early onset dementia

2020 ◽  
Vol 16 (S7) ◽  
Author(s):  
Annalisa Chiari ◽  
Barbara Pistoresi ◽  
Chiara Galli ◽  
Manuela Tondelli ◽  
Giulia Vinceti ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Early Onset ◽  
Early Onset Dementia

scholarly journals Gender differences in patient journey to diagnosis and disease outcomes: results from the European Map of Axial Spondyloarthritis (EMAS)

2021 ◽  
Author(s):  
Marco Garrido-Cumbrera ◽  
◽  
Denis Poddubnyy ◽  
Laure Gossec ◽  
Raj Mahapatra ◽  
...  
Keyword(s):  
Gender Differences ◽  
Psychological Distress ◽  
Disease Activity ◽  
Healthcare Professionals ◽  
Unmet Needs ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
Hla B27 ◽  
Patient Journey ◽  
Disease Characteristics

Abstract Introduction/objectives To evaluate the journey to diagnosis, disease characteristics and burden of disease in male and female patients with axial spondyloarthritis (axSpA) across Europe. Method Data from 2846 unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017–2018) across 13 countries were analysed. Sociodemographic characteristics, lifestyle, diagnosis, disease characteristics and patient-reported outcomes (PROs) [disease activity –BASDAI (0–10), spinal stiffness (3–12), functional limitations (0–54) and psychological distress (GHQ-12)] were compared between males and females using chi-square (for categorical variables) and student t (for continuous variables) tests. Results In total, 1100 (38.7%) males and 1746 (61.3%) females participated in the EMAS. Compared with males, females reported considerable longer diagnostic delay (6.1 ± 7.4 vs 8.2 ± 8.9 years; p < 0.001), higher number of visits to physiotherapists (34.5% vs 49.5%; p < 0.001) and to osteopaths (13.3% vs 24.4%; p < 0.001) before being diagnosed and lower frequency of HLA-B27 carriership (80.2% vs 66.7%; p < 0.001). In addition, females reported higher degree of disease activity in all BASDAI aspects and greater psychological distress through GHQ-12 (4.4 ± 4.2 vs 5.3 ± 4.1; p < 0.001), as well as a greater use of alternative therapies. Conclusion The patient journey to diagnosis of axSpA is much longer and arduous in females, which may be related to physician bias and lower frequency of HLA-B27 carriership. Regarding PROs, females experience higher disease activity and poorer psychological health compared with males. These results reflect specific unmet needs in females with axSpA needing particular attention. Key Points• Healthcare professionals’ perception of axSpA as a predominantly male disease may introduce some bias during the diagnosis and management of the disease. However, evidence about male-female differences in axSpA is scarce.• EMAS results highlight how female axSpA patients report longer diagnostic delay and higher burden of the disease in a large sample of 2846 participants of 13 European countries.• Results reflect unmet needs of European female patients. Healthcare professionals should pay close attention in order to accurately diagnose and efficiently manage axSpA cases while further research should be developed on the cause of reported gender differences.

A novel homozygous mutation in TREM2 found in a Chinese early-onset dementia family with mild bone involvement

2020 ◽  
Vol 86 ◽  
pp. 201.e1-201.e7 ◽  
Author(s):  
Xiantao Li ◽  
Yimin Sun ◽  
Lingyun Gong ◽  
Li Zheng ◽  
Keliang Chen ◽  
...  
Keyword(s):  
Early Onset ◽  
Bone Involvement ◽  
Homozygous Mutation ◽  
Early Onset Dementia

Interdisciplinary Clinic for Adults with Early Onset Dementia in a Mental Health NHS Trust

2006 ◽  
Vol 29 (4) ◽  
pp. 99-104
Author(s):  
S. B. N. Thompson ◽  
T. D. Coates ◽  
F. Chaâbane ◽  
P. Cherry ◽  
L. Collins ◽  
...  
Keyword(s):  
Mental Health ◽  
Early Onset ◽  
Early Onset Dementia

scholarly journals Unmet support needs of early-onset dementia family caregivers: a mixed-design study

BMC Nursing ◽  
2014 ◽  
Vol 13 (1) ◽  
Author(s):  
Francine Ducharme ◽  
Marie-Jeanne Kergoat ◽  
Renée Coulombe ◽  
Louise Lévesque ◽  
Pascal Antoine ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Early Onset ◽  
Support Needs ◽  
Mixed Design ◽  
Design Study ◽  
Early Onset Dementia

scholarly journals Increases in Risky Drinking During the COVID-19 Pandemic Assessed via Longitudinal Cohort Design: Associations With Racial Tensions, Financial Distress, Psychological Distress and Virus-Related Fears

2021 ◽  
Author(s):  
William V Lechner ◽  
Natasha K Sidhu ◽  
Jackson T Jin ◽  
Ahmad A Kittaneh ◽  
Kimberly R Laurene ◽  
...  
Keyword(s):  
Psychological Distress ◽  
High Risk ◽  
Alcohol Use ◽  
Financial Distress ◽  
Daily Life ◽  
Drinking Patterns ◽  
Risky Drinking ◽  
Factors Associated ◽  
High Risk Drinking ◽  
Over Time

Abstract Background The COVID-19 pandemic has created disruptions to daily life resulting in wide-spread unemployment and psychological distress. Recent studies have reported high rates of alcohol use during this time; however, longitudinal data remain scarce and factors associated with increases in high-risk drinking observed over time are unknown. Aims The current study examined changes in high-risk drinking patterns across four 7-day observation periods, prior to and following a university wide campus closure. Additionally, factors associated with changes in alcohol use patterns were examined including financial distress, psychological distress, impact of racial tensions and virus-related fears. Method Students (N = 1001) in the Midwestern USA completed repeated assessments between March and June 2020. Each survey included a timeline follow-back measure of alcohol use. Pandemic-related distress spanning several factors was assessed at the final follow-up. Results Risky drinking patterns increased significantly over time. Overall, psychological distress and impact of racial tensions were associated with higher rates of risky drinking, whereas COVID-19-related fears were associated with lower rates. However, only financial-related distress was associated with an increase in risky drinking patterns over time. Conclusions Increased risky drinking patterns observed in the current study may signal problems that are likely to persist even after the direct impact of the COVID-19 pandemic on daily life ends. Individuals experiencing financial distress may represent a particularly high-risk group. Interventions targeting the cross-section of job loss, financial stress and problematic alcohol use will be important to identify.

scholarly journals Early onset as a marker for disease severity in facioscapulohumeral muscular dystrophy

Neurology ◽  
2018 ◽  
Vol 92 (4) ◽  
pp. e378-e385 ◽  
Author(s):  
Rianne J.M. Goselink ◽  
Karlien Mul ◽  
Caroline R. van Kernebeek ◽  
Richard J.L.F. Lemmers ◽  
Silvère M. van der Maarel ◽  
...  
Keyword(s):  
Hearing Loss ◽  
Muscular Dystrophy ◽  
Disease Severity ◽  
Muscle Weakness ◽  
Early Onset ◽  
Disease Duration ◽  
Facioscapulohumeral Muscular Dystrophy ◽  
Work Status ◽  
Control Groups ◽  
Genetic Characteristics

ObjectiveTo assess the relation between age at onset and disease severity in facioscapulohumeral muscular dystrophy (FSHD).MethodsIn this prospective cross-sectional study, we matched adult patients with FSHD with an early disease onset with 2 sex-matched FSHD control groups with a classic onset; the first group was age matched, and the second group was disease duration matched. Genetic characteristics, muscle performance, respiratory functioning, hearing loss, vision loss, epilepsy, educational level, and work status were compared with the 2 control groups.ResultsTwenty-eight patients with early-onset FSHD were age (n = 28) or duration (n = 27) matched with classic-onset patients. Patients with early-onset FSHD had more severe muscle weakness (mean FSHD clinical score 11 vs 5 in the age-matched and 9 in the duration-matched group, p < 0.05) and a higher frequency of wheelchair dependency (57%, 0%, and 30%, respectively, p < 0.05). In addition, systemic features were more frequent in early-onset FSHD, most important, hearing loss, decreased respiratory function and spinal deformities. There was no difference in work status. Genetically, the shortest D4Z4 repeat arrays (2–3 units) were found exclusively in the early-onset group, and the largest repeat arrays (8–9 units) were found only in the classic-onset groups. De novo mutations were more frequent in early-onset patients (46% vs 4%).ConclusionsPatients with early-onset FSHD more often have severe muscle weakness and systemic features. The disease severity is greater than in patients with classic-onset FSHD who are matched for disease duration, suggesting that the progression is faster in early-onset patients.

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