Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

Klietz, Martin; Drexel, S.; Schnur, Theresa; Lange, Florian; Groh, Adrian; Paracka, Lejla; Greten, Stephan; Dressler, Dirk; Höglinger, Günter U.; Wegner, Florian

doi:10.3390/brainsci10020111

Cited by 17 publications

(14 citation statements)

References 65 publications

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“…Previous studies additionally identified neurobehavioral ALS symptoms [76], patient's behavioral changes [31], patient's apathy [35,77], disinhibition [35] and executive dysfunction [35] to be predictors for higher caregiver burden, while, spirituality and existential wellbeing [78], social support [75], as well as mindfulness [30] were described as protective factors. The latter was also been shown to be inversely associated with caregiver burden in e.g., Parkinson's disease [79]. In our study, the distinction between mental and physical health allowed us to identify an increase of DOC by CGs' physical but not mental health impairment.…”

Section: Discussionmentioning

confidence: 52%

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

et al. 2021

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Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.

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Section: Discussionmentioning

confidence: 52%

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

et al. 2021

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“…We speculate that a significant correlation would have been detected if a more specific PQoL Carers questionnaire had been used [ 23 ]. However, when designing the study, we decided to use the generic SF-36 because of better comparability to recent studies of our group [ 12 , 32 ]. In other studies, it was suggested that caregivers with massive burden also experienced reduced HR-QoL [ 33 , 34 ].…”

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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“…This standardized intervention could be used to study the influence of mindfulness-based interventions on alexithymia in PD. In a recent study of our group, we identified caregiver mindfulness as a relevant protective factor against caregiver burden [ 27 ]. Further studies are needed to prove this assumption.…”

Section: Discussionmentioning

confidence: 99%

“…Our sample included 119 PwP and related primary caregivers. Data from this patient and caregiver cohort unrelated to the current research question have already been reported elsewhere [ 27 , 28 ].…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2020

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Parkinson’s disease (PD) is the second most frequent neurodegenerative disease of people who are beyond 50 years of age. People with PD (PwP) suffer from a large variety of motor and non-motor symptoms resulting in reduced health-related quality of life (HR-QoL). In the last two decades, alexithymia was identified as an additional non-motor symptom in PD. Alexithymia is defined as a cognitive affective disturbance resulting in difficulty to identify and distinguish feelings from bodily sensations of emotional arousal. In PD, the frequency of patients suffering of alexithymia is increased compared to healthy controls. The aim of the present study was to determine the relationship of alexithymia to HR-QoL of the PwP and caregiver burden of the corresponding caregiver. This cross-sectional questionnaire-based study used disease specific questionnaires for HR-QoL and caregiver burden. In total 119 PwP and their corresponding caregivers were included in the study. HR-QoL of the PwP correlated significantly with alexithymia (p < 0.001), especially the sub-components “identifying feelings” (p < 0.001) and “difficulties describing feelings” (p = 0.001). Caregiver burden also correlated significantly with PwP alexithymia (p < 0.001). However, caregiver burden was associated with sub-components “identifying feelings” (p < 0.008) and “external oriented thinking” (p < 0.004). These data support the importance of alexithymia as a non-motor symptom in PD.

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Mindfulness and Psychological Flexibility are Inversely Associated with Caregiver Burden in Parkinson’s Disease

Cited by 17 publications

References 65 publications

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

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

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

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