Alexithymia Is Associated with Reduced Quality of Life and Increased Caregiver Burden in Parkinson’s Disease

Klietz, Martin; Schnur, Theresa; Drexel, S.; Lange, Florian; Paracka, Lejla; Huber, Meret K.; Dressler, Dirk; Höglinger, Günter U.; Wegner, Florian

doi:10.3390/brainsci10060401

Cited by 20 publications

(20 citation statements)

References 64 publications

(96 reference statements)

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“…In the present study, the asymmetrical gender distribution of PD patients was observed. The larger fraction of PD patients were males, and, as most caregivers were their spouses, the caregiver group included more females, which is consistent with other studies of our group [12][13][14]. This is in line with the generally asymmetrical gender distribution in PD with a 1.6:1 relation of male to female patients [33].…”

Section: Impact Of Gender On Caregiver Burden In Parkinson's Diseasesupporting

confidence: 91%

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One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

et al. 2021

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Parkinson’s disease (PD) is a slowly progressive neurodegenerative movement disorder that leads to impairments in activities of daily living. In addition to reducing patients’ quality of life, this disease also affects caregivers’ well-being. Until recently, caregiver burden was mainly assessed by generic questionnaires, which do not take the characteristics of the chronic disease into consideration. In the case of PD, this issue has been addressed by the introduction of the “Parkinson’s disease caregiver burden” questionnaire (PDCB). Data on longitudinal trajectories of caregiver burden are still missing in the literature. In this study, we assessed the one-year trajectory of caregiver burden by the PDCB as a disease-specific questionnaire. Further, gender-specific aspects of caregiver burden were analyzed by applying a caregiver task questionnaire. PDCB total score (n = 84 patients and caregivers) did not significantly change from baseline (30.4) to one year at follow-up (31.5). No significant difference was detected between female and male caregivers in global burden and-specific caregiver tasks. Our data showed only a mild increase of caregiver burden in the timeframe of one year. Gender-specific differences do not seem to impact-specific caregiver tasks in the presented study population.

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Section: Impact Of Gender On Caregiver Burden In Parkinson's Diseasesupporting

confidence: 91%

“…A high percentage point indicated more severe HR-QoL restrictions of the PD patient. To avoid anosognosia and ensure correct results, caregivers were asked to support patients who had a disease-related impairment in completing the PDQ-8 (as also done in [12][13][14]).…”

Section: Methodsmentioning

confidence: 99%

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

et al. 2021

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“…The PDCB is positively validated for early and advanced PD [ 24 ]. This questionnaire showed a significant correlation with PD-specific outcome measures, such as the MDS-UPDRS, the PDQ-39, and PDQ-8 version in recent validation studies and PD cohorts [ 25 – 27 ]. According to our data, the PDCB offers a new opportunity to measure specific burden in caregivers of patients suffering from PSP.…”

Section: Discussionmentioning

confidence: 99%

Validation of the Parkinson’s Disease Caregiver Burden Questionnaire in Progressive Supranuclear Palsy

Klietz

Eichel

Staege

et al. 2021

Parkinson's Disease

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Progressive supranuclear palsy (PSP) is an atypical Parkinson syndrome with axial akinetic-rigid symptoms, early postural instability, and ocular motor impairments. Patients experience a rapid loss of autonomy and care dependency; thus, caregivers must assist in the activities of daily living early in the course of the disease. Caregiver burden is an extremely important factor in disease management. However, there are no specific questionnaires for assessment of caregiver burden in PSP. This study aims to validate the Parkinson’s disease caregiver burden questionnaire (PDCB) as a specific measure of caregiver burden in PSP. PSP patients were assessed by the PSP rating scale, PSP quality-of-life questionnaire (PSP-QoL), Montreal cognitive assessment test (MoCA), and geriatric depression scale (GDS-15). Caregivers filled out the short form 36-health survey, GDS-15, PDCB, and the caregiver burden inventory (CBI). 22 patient caregiver pairs completed the study. PDCB showed a highly significant correlation with the CBI (r 0.911; p < 0.001 ). Internal reliability of the PDCB measured by Cronbach’s alpha was favourable at 0.803. These data support the specificity of the PDCB in PSP caregivers. Future studies with larger sample sizes of PSP patients and caregivers and a multicentric longitudinal design should be performed to gain further insight of caregiver burden in PSP.

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“…Additionally, typical psychiatric symptoms, such as depression, apathy and avoidance of novelty [ 35 ] or alexithymia, might come across as disinterest and hinder the decision progress [ 36 ]. Therefore, as far as late stages of neurodegenerative diseases are concerned, caregivers have to take on the responsibility of decision-making on their own [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

et al. 2021

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Parkinson’s disease (PD) is a neurodegenerative disease which gives a person a high risk of becoming care-dependent. During disease progression, the amount of care concerning activities of daily living can increase, possibly resulting in transition of the people with Parkinson’s disease (PwP) to a care facility. However, there is a lack of knowledge concerning the factors leading to institutionalization of PwP and the consequences for them and their informal caregivers. The aim of this cross-sectional retrospective study was to investigate reasons leading to the transition into an institutional care facility, the process of decision-making and its effects on PwP symptoms and caregiver burden. Participating PwP had to be institutionalized for at most one year after transition at study inclusion. Participants completed a range of semiquantitative questionnaires as well as the caregiving tasks questionnaire. Fourteen patient–caregiver pairs were included. PwP suffered from late-stage PD symptoms with high dependence on help, experiencing several hospitalizations before transition. Analyses revealed a significant decrease in caregiver burden and depressive symptoms of the caregivers after PwP institutionalization. Factors influencing the transition were, e.g., fear of PwP health issues and concerns about caregivers’ health. This study presents new insights into the process of institutionalization and its influence on caregiver burden, including aspects for discussions of physicians with PwP and their caregivers for counselling the decision to move to institutional care.

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Alexithymia Is Associated with Reduced Quality of Life and Increased Caregiver Burden in Parkinson’s Disease

Cited by 20 publications

References 64 publications

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

Validation of the Parkinson’s Disease Caregiver Burden Questionnaire in Progressive Supranuclear Palsy

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

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