scholarly journals Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

2022 ◽  
Vol 12 (1) ◽  
pp. 111
Author(s):  
Kristina Rosqvist ◽  
Anette Schrag ◽  
Per Odin ◽  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Linear Regression ◽  
Caregiver Burden ◽  
Male Patient ◽  
Late Stage ◽  
Informal Caregivers ◽  
Regression Analyses ◽  
Patient Gender

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

scholarly journals Satisfaction with Care in Late Stage Parkinson’s Disease

2019 ◽  
Vol 2019 ◽  
pp. 1-10
Author(s):  
Kristina Rosqvist ◽  
Peter Hagell ◽  
Susanne Iwarsson ◽  
Maria H Nilsson ◽  
Per Odin
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Late Stage ◽  
Informal Caregivers ◽  
Satisfaction With Care ◽  
Regression Analyses ◽  
Factors Associated ◽  
Individual Quality Of Life ◽  
Care Support

In late stage Parkinson’s disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers’ satisfaction with support and to identify factors associated with caregivers’ satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients’ HY stage (P=0.005) and caregivers’ QoL (Alzheimer’s Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

scholarly journals Factors Associated with Health‐Related Quality of Life in Late‐Stage Parkinson's Disease

2021 ◽  
Author(s):  
Kristina Rosqvist ◽  
Per Odin ◽  
Stefan Lorenzl ◽  
Wassilios G. Meissner ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Late Stage ◽  
Health Related Quality ◽  
Factors Associated ◽  
Related Quality ◽  
Health Related

Quality of Life of People With Alzheimer Disease: Comparison Between Dyads Degree of Kinship

2020 ◽  
pp. 089198872091552
Author(s):  
Marcela Moreira Lima Nogueira ◽  
Jose Pedro Simões Neto ◽  
Marcia Cristina Nascimento Dourado
Keyword(s):  
Quality Of Life ◽  
Alzheimer Disease ◽  
Linear Regression ◽  
Multivariate Regression ◽  
Self Report ◽  
Regression Analyses ◽  
Burden Of Care ◽  
Significant Difference ◽  
Better Than

The quality of life (QoL) of people with Alzheimer disease (PwAD) may be influenced by the type of relationship between carer and the PwAD. Dyads of 98 PwAD/carers (N = 49 spouse-carers; N = 49 nonspouses carers) were measured about QoL, cognition, dementia severity, awareness of disease, functionality, depression, anxiety, and burden of care. Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse and nonspouse self-report PwAD QoL (PQOL) and to compare carers’ ratings of PwAD QoL (C-PQOL). The total score of QoL for spouse and nonspouse PwAD showed no significant difference ( P = .29). The linear regression demonstrated that higher awareness of disease was significantly related to spouse PQOL ( P = .001). Nonspouse PQOL was negatively related to lower depression ( P = .007). The total score of QoL for spouse and nonspouse C-PQOL showed no significant difference ( P = .14). The linear regression demonstrated that depression of spouse-PwAD ( P < .001) and burden of care ( P = .001) were negatively related to spouse-dyads’ C-PQOL. The nonspouse-dyads C-PQOL was negatively related to depression of nonspouse-PwAD ( P < .001), awareness of disease ( P = .001), and the mood of the carer ( P = .01). Spouse and nonspouse PwAD evaluate PQOL better than carers (C-PQOL). No significant difference was found in the total PQOL and C-PQOL of spouse and nonspouse, but dyads evaluated differently about what is important to assess QoL.

scholarly journals Association between Disease-Specific Quality of Life and Complementary Medicine Use in Patients with Rhinitis in Taiwan: A Cross-Sectional Survey Study

2014 ◽  
Vol 2014 ◽  
pp. 1-8 ◽  
Author(s):  
Malcolm Koo ◽  
Kai-Li Liang ◽  
Rong-San Jiang ◽  
Hsin Tsao ◽  
Yueh-Chiao Yeh
Keyword(s):  
Quality Of Life ◽  
Linear Regression ◽  
Medical Condition ◽  
Survey Study ◽  
Regression Analyses ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Female Sex ◽  
Disease Specific

Rhinitis is a common medical condition and can seriously impact patients’ quality of life. The objective of this study was to investigate the association between disease-specific quality of life and use of complementary and alternative medicine (CAM) modalities among Taiwanese rhinitis patients. A cross-sectional survey was undertaken at the outpatient department of otolaryngology in a medical center in Taiwan. Sociodemographic information, disease-specific quality of life (Chinese version of the 31-item Rhinosinusitis Outcome Measure, CRSOM-31), and previous use of CAM modalities for treatment of rhinitis of the patients were ascertained. Factor analysis was performed to reduce the number of CAM modalities. The resulting factors were analyzed for their association with CRSOM-31 score using linear regression analyses. Results from the multiple linear regression analyses indicated that Factor 1 (traditional Chinese medicine), Factor 2 (mind-body modalities), Factor 3 (manipulative-based modalities), female sex, and smoking were significantly associated with a worse disease-specific quality of life. In conclusion, various CAM modalities, female sex, and smoking were independent predictors of a worse disease-specific quality of life in Taiwanese patients with rhinitis.

scholarly journals Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

10.2196/21466 ◽  
2021 ◽  
Vol 23 (4) ◽  
pp. e21466
Author(s):  
Ieva Biliunaite ◽  
Evaldas Kazlauskas ◽  
Robbert Sanderman ◽  
Inga Truskauskaite-Kuneviciene ◽  
Austeja Dumarkaite ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Behavioral Therapy ◽  
Caregiver Burden ◽  
Behavioral Therapy ◽  
Informal Caregivers ◽  
Well Being ◽  
Cognitive Behavioral ◽  
World Health ◽  
Quality Of Life Scale

Background Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content. Conclusions This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724

A Pilot Trial of Cognitive Behavioral Therapy for Caregivers After Deep Brain Stimulation for Parkinson's Disease

2020 ◽  
pp. 089198872092472
Author(s):  
Philip E. Mosley ◽  
Katherine Robinson ◽  
Nadeeka N. Dissanayaka ◽  
Terry Coyne ◽  
Peter Silburn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Caregiver Burden ◽  
Brain Stimulation ◽  
Behavioral Therapy ◽  
Caregiver Quality ◽  
Deep Brain

Subthalamic deep brain stimulation for Parkinson's disease may not ameliorate burden among caregivers. An 8-session, manualized program of cognitive-behavioral therapy (CBT) was delivered to a pilot sample of 10 caregivers (6 females, mean age: 60, age range: 34-79). Primary outcome measures were caregiver burden (Zarit Burden Interview) and caregiver quality of life (Parkinson’s Disease Questionnaire–Carer). Secondary outcome measures comprised ratings of depression and anxiety in the caregiver, in addition to relationship quality. Caregiver burden ( t = 2.91 P = .017) and caregiver anxiety ( t = 2.82 P = .020) symptoms were significantly reduced at completion of the program, and these benefits were maintained 3 months later. Caregiver quality of life had significantly improved by the end of the intervention ( t = 3.02 P = .015), but this effect was not sustained after 3 months. The longitudinal influence of participation in the program on caregiver burden was confirmed in a linear, mixed-effects model, χ2 (3) = 15.1, P = .0017). The intervention was well received by participants, and qualitative feedback was obtained. These results indicate that caregiver burden is modifiable in this cohort with a short course of CBT, that benefits are maintained after termination of the program, and that psychological treatment is acceptable to participants. Larger, controlled trials are justified.

scholarly journals Determinants of Dyadic Relationship and Its Psychosocial Impact in Patients with Parkinson’s Disease and Their Spouses

2017 ◽  
Vol 2017 ◽  
pp. 1-9 ◽  
Author(s):  
Michaela Karlstedt ◽  
Seyed-Mohammad Fereshtehnejad ◽  
Dag Aarsland ◽  
Johan Lökk
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Health Related Quality ◽  
Dyadic Relationship ◽  
Significant Difference ◽  
Related Quality ◽  
Health Related

The caregiver-care receiver relationship (mutuality) in Parkinson’s disease (PD) and its association with motor and non-motors symptoms, health-related quality of life (HRQoL), and caregiver burden have not fully been investigated. The aim of our study was to explore if (1) the level of mutuality perceived by PD-patients and PD-partners differs, (2) different factors are associated with perceived mutuality by PD-patients and PD-partners, and (3) mutuality is associated with PD-patients health-related quality of life (HRQoL) and caregiver burden. We collected data on motor signs (UPDRS III), non-motor manifestations (NMSQuest), PD-patients’ cognition (IQCODE), mutuality scale (MS), PD-patients’ HRQoL (PDQ8), and caregiver burden (CB) from 51 PD dyads. Predictors were identified using multivariate regression analyses. Overall, the dyads rated their own mutuality as high with no significant difference between the dyads except for the dimension of reciprocity. PD-patients’ MS score (p=.001) and NMSQuest (p≤ .001) were significant predictors of PDQ8. Strongest predictor of CB was PD-partners’ MS score (<.001) and IQCODE (p=.050). In general, it seems that non-motor symptoms contribute to a larger extent to the mutual relationship in PD-affected dyads than motor disabilities.

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