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 ◽  
...  

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.

2013 ◽  
Vol 25 (7) ◽  
pp. 1097-1105 ◽  
Author(s):  
Maria Fernanda Barroso Sousa ◽  
Raquel Luiza Santos ◽  
Cynthia Arcoverde ◽  
Pedro Simões ◽  
Tatiana Belfort ◽  
...  

ABSTRACTBackground: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.


2021 ◽  
Vol 79 (9) ◽  
pp. 799-807
Author(s):  
Sehnaz Basaran ◽  
Halil İbrahim Tas

ABSTRACT Background: Investigating predictive factors of reduced quality of life (QOL) of patients and their association with focal epilepsy can improve management and treatment strategies. Objective: This study aimed to investigate the relationship between affective temperaments, depression, anxiety, disease characteristics, and QOL and to explore the predictors of QOL in patients with temporal lobe epilepsy (TLE) and extratemporal lobe epilepsy (ETLE). Methods: A total of 50 patients with TLE, 51 patients with ETLE, and 70 controls were enrolled. Affective temperaments were evaluated using the Temperament Evaluation of Memphis, Pisa, Paris, and San Diego-Autoquestionnaire (TEMPS-A). QOL was assessed by the Short-Form Health Survey (SF-36). Beck Depression Inventory and Beck Anxiety Inventory were used to explore depression and anxiety severity, respectively. Results: Compared with the controls, patients with TLE and ETLE had significantly higher scores on all TEMPS-A scales, except on hyperthymic temperament. All the SF-36 subscale scores were lower in the TLE and ETLE groups. Linear regression analysis revealed that depressive symptoms, anxiety, depressive and irritable temperament, and seizure frequency were significant predictors of QOL in TLE. Patients with ETLE with temperamental disturbances, depressive symptoms, and polytherapy had a poorer QOL. Conclusions: Affective temperaments, psychiatric disorders, and clinical factors may predict impaired QOL in patients with TLE and ETLE. Further studies are needed to identify predictors of QOL in various epilepsy subtypes.


2018 ◽  
Vol 45 (1-2) ◽  
pp. 91-104 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Frøydis Bruvik ◽  
...  

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.


1995 ◽  
Vol 4 (1) ◽  
pp. 36-43 ◽  
Author(s):  
EM Bainger ◽  
JI Fernsler

BACKGROUND: Although use of the internal cardioverter defibrillator in selected high-risk patient groups has significantly improved survival, questions have arisen regarding its impact on psychological adjustment and quality of life. OBJECTIVES: To determine whether there was a difference in perceived quality of life of internal cardioverter defibrillator recipients before implantation, reported retrospectively, and after implantation. METHODS: Survey packets containing a demographic data form, a modified version of the Ferrans and Powers Quality of Life Index: Cardiac Version, and a consent form were mailed to internal cardioverter defibrillator recipients accrued from two hospitals; 70 patients comprised the convenience sample. RESULTS: No significant difference in perceived overall quality of life was revealed by before and after implantation scores of t tests or analyses of variance. Young, unemployed patients with multiple health problems were most at risk for quality of life deficits. Overall, recipients in this study appeared to adapt effectively to the stresses associated with the device. CONCLUSIONS: Our results suggest that the internal cardioverter defibrillator did not prolong life at a sacrifice to quality of life. These findings can help identify patients at increased risk for quality of life deficits.


2019 ◽  
Vol 18 (2) ◽  
pp. 141-147
Author(s):  
Hanneke Poort ◽  
Jamie M. Jacobs ◽  
William F. Pirl ◽  
Jennifer S. Temel ◽  
Joseph A. Greer

AbstractObjectivesOral treatment (targeted or chemotherapy) for cancer is being increasingly used. While fatigue is a known side effect of intravenous chemotherapy, the rate of fatigue and the impact of fatigue on other patient-reported outcomes are not well described.MethodAt Massachusetts General Hospital Cancer Center, 180 adult patients prescribed oral targeted or chemotherapy for various malignancies enrolled in a randomized controlled trial of adherence and symptom management. Patients completed baseline self-reported measures of fatigue (Brief Fatigue Inventory; BFI), anxiety and depressive symptoms (Hospital Anxiety and Depression Scale; HADS), and quality of life, including subscales for physical, social, emotional, and functional well-being ([QOL] Functional Assessment of Cancer Therapy — General; FACT-G). We examined clinically relevant fatigue using a validated cut-off score for moderate-severe fatigue (BFI global fatigue ≥4) and tested the associations with anxiety symptoms, depressive symptoms, and QOL with independent samples t-tests.ResultsAt baseline, 45 of 180 participants (25.0%) reported moderate-severe fatigue. Fatigued patients experienced more anxiety symptoms (mean diff. 3.73, P < 0.001), more depressive symptoms (mean diff. 4.14, P < 0.001), and worse QOL on the total FACT-G score (mean diff. −19.58, P < 0.001) and all subscales of the FACT-G compared to patients without moderate-severe fatigue.Significance of resultsOne in four patients on oral treatment for cancer experienced clinically relevant fatigue that is associated with greater anxiety and depressive symptoms and worse QOL.


2019 ◽  
Vol 37 (3) ◽  
pp. 201-213 ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Feline Wowretzko ◽  
...  

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer. Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient’s discharge or death at specialist inpatient palliative care ward. Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of “bodily pain” and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms. Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.


2019 ◽  
Vol 32 ◽  
Author(s):  
Jéssica Maria Marcusso Orsini ◽  
Joyce Karla Machado da Silva ◽  
Marcos da Cunha Lopes Virmond ◽  
Camila Costa de Araujo

Abstract Introduction: Patient satisfaction is an important indicator of care quality and can be used to set goals and identify areas for improvement. Objective: To evaluate the satisfaction, quality of life and depressive symptoms of patients at the Uenp (State University of Northern Paraná) Physiotherapy teaching clinic. Method: Cross-sectional, quantitative descriptive study. Sixty-one patients completed a sociodemographic questionnaire, the “Instrument to assess patient satisfaction with physical therapy in the public health system”, the short-form-36 health survey (SF-36) to evaluate quality of life, and the Beck Depression Inventory (BDI) to determine the presence of depression. For statistical analysis, data were described using means and standard deviations, the Shapiro-Wilk test was applied to assess normality, and the variables were analyzed by Pearson’s correlation coefficient, with p ≤ 0.05 considered statistically significant. Results: The patient-therapist relationship was largely classified as “excellent”; the most common response for the item “respect and interest shown to patients” was also “excellent”. Patients scored well on the SF-36, indicating good quality of life; the highest scores were obtained in the “mental health” domain (65.04 ± 23.25). Regarding the depression, most patients (52.44%) displayed depressive symptoms. Correlation between satisfaction and the BDI showed a statistically significant difference in twelve dimensions. Comparison between the SF-36 and BDI indicated a statistically significant difference in eight domains. Conclusion: Patients are satisfied with the treatment received and the competence of the health care team at the clinic.


2020 ◽  
Vol 30 (4) ◽  
pp. 549-559
Author(s):  
Christian Paech ◽  
Victoria Ebel ◽  
Franziska Wagner ◽  
Stephanie Stadelmann ◽  
Annette M. Klein ◽  
...  

AbstractIntroduction:The implantation of a pacemaker or an implantable cardioverter-defibrillator during childhood may reduce quality of life and lead to mental health problems. This study aimed to evaluate potential mental health problems (i.e., depressive and anxiety symptoms) and quality of life in children with cardiac active devices in comparison to healthy peers.Methods:We analysed data of children with pacemakers or implantable cardioverter-defibrillators aged 6–18 years. Quality of life, depressive and anxiety symptoms were assessed by standardised questionnaires. The results were compared to age-matched reference groups.Results:Children with implantable cardioverter-defibrillator showed significant lower quality of life in comparison to reference group (p = 0.03), but there was no difference in quality of life between children with pacemaker and reference group. There was no significant difference in depressive symptoms between children with a cardiac rhythm device compared to reference group (self-report: p = 0.67; proxy report: p = 0.49). There was no significant difference in anxiety (p = 0.53) and depressive symptoms (p = 0.86) between children with pacemaker and children with implantable cardioverter-defibrillator.Conclusions:Living with an implantable cardioverter-defibrillator in childhood seems to decrease the patients’ quality of life. Although children with pacemaker and implantable cardioverter-defibrillator don’t seem to show more depressive and anxiety symptoms in comparison to their healthy peers, there still can be an increased risk for those children to develop mental health problems. Therefore, treating physicians should be aware of potential mental health problems and provide the patients and their families with appropriate therapeutic offers.


2019 ◽  
Vol 16 (1) ◽  
pp. 47-62 ◽  
Author(s):  
Elina Pucite ◽  
Ildze Krievina ◽  
Evija Miglane ◽  
Renars Erts ◽  
Dainis Krievins ◽  
...  

Background:Although several studies have evaluated the change of cognitive performance after severe carotid artery stenosis, the results still remain elusive. The objective of this study was to assess changes in cognitive function, depressive symptoms and Health Related Quality of Life (HRQoL) after carotid stenosis revascularisation and Best Medical Treatment (BMT).Methods:Study involved 213 patients with ≥70% carotid stenosis who underwent assessment of cognitive function using Montreal Cognitive Assessment scale (MoCA), depressive symptoms - using Patient Health Questionnaire-9 (PHQ-9) and HRQoL - using Medical Outcome Survey Short Form version 2 (SF-36v2). The assessment was performed before and at 6 and 12 months followup periods in patients who had Carotid Endarterectomy (CEA), Carotid Artery Stenting (CAS) or received BMT only.Results:Improvement in the total MoCA scores was observed after 6 and 12 months (p<0.001, Kendall's W=0.28) in the CEA group. In the CAS group - after 12 months (p=0.01, Kendall's W=0.261) whereas in the BMT group - no significant changes (p=0.295, Kendall's W=0.081) were observed. Reduction of depressive symptoms was not found in any of the study groups. Comparing mean SF-36v2 scores in the CEA group, there was no significant difference in any of 10 subscales. Likewise in the CAS group - no significant difference in 9 of 10 subscales (p=0.028, η2=0.343) was observed. Three subscales worsened in the BMT group during the 1-year follow-up period.Conclusion:Patients with severe carotid stenosis who underwent revascularisation enhanced their cognitive performance without exerting significant change of depressive symptoms. Preoperative HRQoL may be maintained for at least one year in the CEA group.


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