scholarly journals YOUNG AND LATE ONSET DEMENTIA: HOW DO THEY DIFFER IN TERMS OF DOMAINS OF AWARENESS?

2021 ◽  
Author(s):  
Maria Alice Baptista ◽  
Nathália Kimura ◽  
Isabel Lacerda ◽  
Felipe Silva ◽  
Marcia Cristina Dourado
Keyword(s):  
Quality Of Life ◽  
Cognitive Functioning ◽  
Functional Activity ◽  
Late Onset ◽  
Emotional Functioning ◽  
Neuropsychiatric Symptoms ◽  
Health Condition ◽  
Social And Emotional ◽  
Late Onset Dementia

Background: Young onset dementia (YOD) is a diagnosis given when the neurocognitive process sets in before 65 years age. The YOD dementia process poses specific challenges related to financial issues, work and social demands, marriage, and parenthood, including losses and shifting roles, care responsibilities, as well as prospects for the future. Those challenges might account for the difference in awareness between YOD and late onset dementia (LOD). Awareness can be defined as the recognition of changes caused by deficits related to the disease process, which may include the ability to recognize a specific deficit, the emotional response to the difficulties presented and the ability to understand the impact of the disease in activities of daily living Objectives: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning and quality of life (QoL) in both groups. Methods: This is a cross-sectional design study. A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected from an Alzheimer’s disease outpatient unit in Rio de Janeiro, Brazil. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life. Results: People with YOD were more aware of disease (total score), more aware of their cognitive functioning and health condition and of their functional activity impairments than people with LOD, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Besides, people with YOD had more neuropsychiatric symptoms than people with LOD. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and quality of life has a greater relation to awareness for people with LOD. Conclusions Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

Domains of Awareness in Young and Late Onset Dementia

2021 ◽  
pp. 1-10
Author(s):  
Maria Alice Tourinho Baptista ◽  
Nathália Kimura ◽  
Isabel Barbeito Lacerda ◽  
Felipe de Oliveira Silva ◽  
Marcia Cristina Nascimento Dourado
Keyword(s):  
Cognitive Functioning ◽  
Functional Activity ◽  
Late Onset ◽  
Emotional Functioning ◽  
Neuropsychiatric Symptoms ◽  
Age At Onset ◽  
Health Condition ◽  
Social And Emotional ◽  
People With Dementia ◽  
Late Onset Dementia

Background: There is a lack of research investigating whether there are differences in the domains of awareness according to the age at onset of dementia. Objective: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life (QoL) in both groups. Methods: A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and QoL. Results: People with YOD had more neuropsychiatric symptoms than people with LOD. People with YOD were more aware of disease (total score), of their cognitive functioning and health condition and of their functional activity impairments, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and QoL has a greater relation to awareness for people with LOD. Conclusion: Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

scholarly journals Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

2018 ◽  
Vol 45 (1-2) ◽  
pp. 91-104 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Frøydis Bruvik ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Late Onset ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Community Dwelling ◽  
Cross Sectional ◽  
Young Onset ◽  
Proxy Version ◽  
Late Onset Dementia

Aims: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer’s (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer’s Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. Results: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). Conclusion: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.

scholarly journals The level of quality of life of schoolchildren with disorders of the autic spectrum in comparison with typically developed peers

2021 ◽  
pp. 107-115
Author(s):  
O. Petrusenko ◽  
I. Bodnar
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorders ◽  
Physical Education ◽  
Emotional Functioning ◽  
Well Being ◽  
Autism Spectrum ◽  
Typical Development ◽  
Social And Emotional ◽  
Spectrum Disorders

In connection with the increasing the number of children with autism spectrum disorders (ASD) who enrolls in educational institutions of Ukraine, the issue of individualization of physical education (PE) of children with ASD in the school process becomes important. There is little data on the quality of life of schoolchildren with autism spectrum disorders. It does not allow to draw individual trajectories of physical education of such children, to help them to improve their adaptability. Most of studies have been performed on males. Objective: to analyze the level of cognitive, physical, emotional, social functioning and functioning in school of girls of primary school age with autism spectrum disorders and compare them with typically developed peers. It was found that there were no differences between the rates of girls with ASD and girls with typical development in walking and running, feeling of pain and low energy levels, the frequency of school absences due to doctor visits and the frequency of forgetting things. However, the level of development of cognitive, social and emotional functioning of girls with ASD is significantly lower than the indicators with typical development by all criteria. To overcome the problems with cognitive, social and emotional functioning of girls with ASD, it is recommended to select appropriate means of PE. In oder to improve the cognitive processes (attention, memory) of girls with ASD, we recommend to increase the amount of means that promote the development of coordination in PE classes; to improve physical functioning - exercises for developing muscle strength and endurance. The game activity with normal girls will help to improve the social well-being of girls with ASD. We should use oriental martial arts and oriental gymnastics to improve the psycho-emotional state of girls with ASD.

scholarly journals Physical, Cognitive, and Psychosocial Predictors of Functional Disability and Health-Related Quality of Life in Adolescents with Neurofibromatosis-1

2012 ◽  
Vol 2012 ◽  
pp. 1-8 ◽  
Author(s):  
Molly M. Garwood ◽  
Jessica M. Bernacki ◽  
Kathi M. Fine ◽  
Keri R. Hainsworth ◽  
W. Hobart Davies ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Complex Disease ◽  
Functional Disability ◽  
Emotional Functioning ◽  
Neurofibromatosis 1 ◽  
Social Emotional ◽  
Social And Emotional ◽  
Related Quality ◽  
Health Related

Objective. To examine physical, cognitive, and social-emotional predictors of quality of life (HRQOL) and functional disability (FD) in adolescents diagnosed with Neurofibromatosis-1. Methods. Participants were twenty-seven adolescents with a diagnosis of NF-1 who were recruited through an NF-1 specialty clinic at a large Midwestern children’s hospital. Measurements of the adolescents’ cognitive functioning, pain, FD, HRQOL, and social and emotional functioning were obtained with corresponding parent measures. Results. Emotional functioning significantly predicted youth-reported and parent-reported HRQOL, whereas days of pain significantly predicted youth-reported FD. Conclusions. NF-1 is a complex disease. Measurements of the overall impact of the disease tap into different aspects of the effects of NF-1 on daily life. Global outcomes such as HRQOL appear to be influenced especially by emotional functioning, whereas outcomes such as FD appear to be influenced by the physical/organic aspects of NF-1.

Correlation between work productivity loss (WPL) and European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30) domains from the MONALEESA-7 (ML-7) trial of premenopausal women with HR+/HER2- advanced breast cancer (ABC).

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 1051-1051
Author(s):  
Debu Tripathy ◽  
Tristan Curteis ◽  
Sara A. Hurvitz ◽  
Denise A. Yardley ◽  
Fabio Franke ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Emotional Functioning ◽  
Work Productivity ◽  
Premenopausal Women ◽  
Social And Emotional ◽  
Physical Role ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

1051 Background: The international, randomized, double-blind, placebo-controlled, Phase III ML-7 trial (NCT02278120) assessed ribociclib + endocrine therapy (ET) vs ET alone in premenopausal women with HR+/HER2– ABC. To our knowledge, the relationship between WPL and domains of the EORTC QLQ-C30 and the tumor-specific module for breast cancer (QLQ-BR23) has not been explored in ABC. In this post hoc analysis (data cutoff, November 30, 2018) of all patients (pts) enrolled in ML-7, we assessed the correlation between the WPL component of the Work Productivity and Activity Impairment: General Health (WPAI:GH) questionnaire and domains of the EORTC QLQ-C30/BR23. Methods: We analyzed EORTC and WPAI:GH data from all pts enrolled in ML-7 who were employed at any point during the trial (N = 329 of 672 total pts). Domains of the EORTC QLQ-C30 and QLQ-BR23 that had the greatest correlation (pairwise Pearson correlation) with WPL were prioritized for analysis. Separate univariable mixed-model repeated-measures regression models were fitted for each domain, with WPL as the dependent variable and each EORTC domain as a single fixed-effect covariate. Linear and quadratic relationships were considered. Model selection was based on the Akaike information criterion (AIC). Results: Linear models were favored over quadratic models. WPL was negatively correlated with global health status (GHS) and the physical, role, social, and emotional functioning domains and was positively correlated with the fatigue and pain domains of the QLQ-C30 ( P <.001; Table). The coefficients indicated the estimated mean change in WPL was associated with a 1-unit increase in each QLQ-C30 domain. For example, a 10-point increase in GHS was associated with an estimated mean decrease of 7.8% (95% CI, 7.1%-8.5%) in WPL. Conclusions: Greater WPL was associated with higher levels of fatigue and pain and with lower levels of overall quality of life and physical, role, social, and emotional functioning among pts with HR+/HER2− ABC in ML-7. Further investigation of the correlation with QLQ-BR23 and multivariable analysis could determine which EORTC domains and items independently drive these findings. Clinical trial information: NCT02278120 .[Table: see text]

scholarly journals The Association Between Performance Status and Health-Related Quality of Life

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3312-3312
Author(s):  
Mark A Fiala ◽  
Jesse Keller ◽  
Michael Slade ◽  
Keith Stockerl-Goldstein ◽  
Michael Tomasson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functioning ◽  
Physical Functioning ◽  
Emotional Functioning ◽  
Performance Status ◽  
Health Related Quality ◽  
Cognitive Functioning Scale ◽  
Related Quality ◽  
Health Related

Abstract Background: Performance Status (PS) is often used to assess the functional status of cancer patients. One of the most commonly used scales is the Eastern Cooperative Oncology Group (ECOG) PS. Using the ECOG PS scale, the oncologist assigns a score ranging from 0 (Fully active, able to carry on all pre-disease performance without restriction) to 4 (completely disabled; cannot carry on any selfcare; totally confined to bed or chair). In multiple myeloma (MM), a PS > 2 has been associated with a 35% increased risk of death following autologous stem cell transplant (ASCT) (Turesson et al, Br J Haematol, 1999), and therefore a PS ≤ 2 is generally required for ASCT and for eligibility in clinical trials. PS is often seen as a surrogate for health-related quality of life (HRQOL), which are patient reported measure(s) of well-being; however, they are separate constructs. While poorer PS has been associated with a decrease in HRQOL, it is unclear how much of the variance in HRQOL is explained by PS. Objectives: 1) To determine the association between PS and HRQOL; 2) to determine how much variance in HRQOL is explained by PS. Methods: Data was extracted from the open-access Multiple Myeloma Research Foundation (MMRF) Researcher Gateway corresponding with interim analysis 6 from the CoMMpass study. The CoMMpass study dataset included 562 patients who completed the EORTC QLQ-C30 and EORTC QLQ-MY20 at MM diagnosis. The range of scores for these HRQOL measures is 0-100, with higher scores indicating higher values. Data was analyzed using SPSS 21. The association between PS and HRQOL was assessed by one-way ANOVA tests; the amount of variance in HRQOL explained by PS was assessed by linear regression modeling. Results: PS was associated with all 9 HRQOL scales analyzed (p<0.001). Poorer PS was associated with poorer global health, physical function, emotional functioning, cognitive functioning, social functioning, and role functioning; and greater disease symptoms, fatigue, and pain. However, PS explained only a portion of the variance seen with each scale. The most variance explained by PS was seen in the physical functioning scale (38%); the least was in the cognitive functioning scale (10%). Adding age and International Staging System (ISS) stage significantly improved 4 of the 9 models (physical functioning, emotional functioning, fatigue, and pain); however, improvements were modest (2-5%). Conclusions: PS was significantly associated with HRQOL but it was not considered a good explanatory model for any of the scales analyzed as it could not explain at least 50% of the variance, even after the addition of age and ISS stage. A broader examination of the patients' disease, functional, social, and socioeconomic context is needed to better understand HRQOL and to identify areas which may be improved by intervention. Table 1. Association between Performance Status and Health-Related Quality of Life Performance Status 0 n= 202 Performance Status 1 n = 249 Performance Status 2 n = 47 Performance Status 3/4 n = 29 p Global Health Scale 75 54 33 21 <0.001 Physical Functioning Scale 93 73 33 13 <0.001 Cognitive Functioning Scale 100 83 83 66 <0.001 Emotional Functioning Scale 83 75 66 41 <0.001 Social Functioning Scale 100 66 33 33 <0.001 Role Functioning Scale 100 66 0 0 <0.001 Disease Symptom Scale 16 27 50 53 <0.001 Fatigue Scale 22 33 66 77 <0.001 Pain Scale 16 33 83 100 <0.001 Table 2. Amount of Variance in Health-Related Quality of Life Explained by Performance Status, Age, and Stage Model 1A Model 2B R2 F p R2 F change pC Global Health Scale 0.233 35.7 <0.001 0.234 1.6 0.188 Physical Functioning Scale 0.381 72.0 <0.001 0.405 6.3 <0.001 Cognitive Functioning Scale 0.105 13.8 <0.001 0.121 1.3 0.259 Emotional Functioning Scale 0.102 13.3 <0.001 0.158 10.1 <0.001 Social Functioning Scale 0.215 32.1 <0.001 0.222 2.1 0.106 Role Functioning Scale 0.295 48.7 <0.001 0.297 0.7 0.563 Disease Symptom Scale 0.148 19.9 <0.001 0.164 1.9 0.132 Fatigue Scale 0.235 35.9 <0.001 0.259 5.9 0.001 Pain Scale 0.204 30.0 <0.001 0.218 2.7 0.048 A-Performance status B-Performance status, age, and International Staging System stage C-Of F change Disclosures Vij: Takeda, Onyx: Research Funding; Celgene, Onyx, Takeda, Novartis, BMS, Sanofi, Janssen, Merck: Consultancy.

Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers

2020 ◽  
pp. 089198872093335
Author(s):  
Nathália R. S. Kimura ◽  
José Pedro Simões ◽  
Raquel Luiza Santos ◽  
Maria Alice Tourinho Baptista ◽  
Maria da Glória Portugal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Late Onset ◽  
Linear Regression Analysis ◽  
Anxiety Symptoms ◽  
Care Recipient ◽  
Convenience Sample ◽  
Significant Difference ◽  
Late Onset Dementia

Objective: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers’ quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. Results: A significant difference was found in caregivers’ burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers’ quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers’ perspective of quality of life of care recipient and caregivers’ hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers’ burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers’ burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers’ depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers’ depressive symptoms in both the groups. Conclusion: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

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