Changes in Principal Caregiver Mood Affects the Mood of the Parkinson’s Disease Patient: The Vicious Cycle of Illness

Abstract

Background: Although many studies have analyzed what factors contribute to caregiver burden in Parkinson's disease (PD), there is currently no knowledge about how the status of the caregiver could impact the patient. Objective:The aim of this study was to analyze how the change in the caregiver's status influences PD patients.Methods: PD patients and their caregivers who were recruited from January/2016 to November/2017 from 35 centers in Spain from the COPPADIS cohort were included in the study (V0). They were evaluated again at 2-year follow-up (V2). Caregivers completed the Zarit Caregiver Burden Inventory (ZCBI), Caregiver Strain Index (CSI), Beck Depression Inventory-II (BDI-II), and EUROHIS-QOL 8-item index (EUROHIS-QOL8) at V0 and V2. Multivariate models were used to analyze the impact of the change from V0 to V2 ( ) on the caregiver's status over the change in the patient's status.Results: BDI-II and EUROHIS-QOL8 in the caregiver predicted BDI-II (␤ = 0.32; p < 0.0001; R 2 = 0.71) and EUROHIS-QOL8 (␤ = 0.39; p < 0.0001; R 2 = 0.68) in the patient, respectively. Variables related to the caregiver were not associated with changes in the patient´s health-related QoL ( PDQ-39 [39-item Parkinson's disease Questionnaire]) or autonomy for activities of daily-living ( ADLS [Schwab & England Activities of Daily Living Scale]). Conclusion:The change in the caregiver's mood and global QoL was associated with the change in the patient's mood and global QoL, respectively, independently of other variables of the disease influencing both patient´s aspects. Based on this finding, it could be of great importance to detect depression in the principal caregiver of a patient and act on it as earlier as possible.

Staging Parkinson's disease according to the MNCD classification correlates with caregiver burden

“…On the other hand, some of the non‐statistically significant differences (EUROHIS‐QOL8; BDI‐II) may be due to a small sample size (e.g., 60% of caregivers of patients at stages 4–5 had depressive symptoms compared to 35.3% at stage 1). Of note, a moderate correlation was observed between the caregiver's BDI‐II total score and the MNCD total score (from 0 to 12), and between mood and burden and mood and strain in the caregiver, suggesting the necessity of being alert about depressive symptoms due to its important implications (Santos‐García et al., 2023 ) in the principal caregiver of a patient with a greater disease burden according to the MNCD classification. An ideal scenario could be to apply the MNCD classification in clinical practice to the patient at the first visit (i.e., a naïve patient) and to monitor its changes in each visit in the short‐, medium‐, and long‐term (i.e., >15 years) in a big cohort of PD patients and caregivers (i.e., >500) in a prospective follow‐up study.…”

“…In fact, NMSs have gained in importance in the latest proposed diagnostic criteria of PD (Postuma et al., 2015 ; Berg et al., 2015 ; Heinzel et al., 2019 ). These four capitals’ aspects commented are the basement of a new proposed classification for PD called MNCD (Santos‐García et al., 2023 ). The MNCD classification includes four major axes (M, motor symptoms; N, NMS; C, cognition; D, dependency for ADL) and five stages with the aim to categorize and differentiate patients in a different evolutionary stage, being the first PD classification taking into account key aspects of the disease, such as axial symptoms, motor fluctuations, NMS, cognitive problems, and their impact on disability.…”

“…Parkinson's disease (PD) is a complex and very heterogeneous progressive neurodegenerative disorder causing not only motor but also non‐motor symptoms (NMSs) that result in loss of patient autonomy for activities of daily living (ADL) and worse quality of life (QoL) impairment, but second, caregiver's strain and burden as well (Greenland et al., 2019 ; Mosley et al., 2017 ; Zhao et al., 2021 ). Moreover, caregiver's status impacts on patient's status as well, which has been named the “vicious circle of illness” (Santos‐García et al., 2023b ). From a clinical point of view and with the aim of defining exhaustively the status of a patient with PD at each moment, a novel simple classification called “MNCD” has been proposed (Santos‐García et al., 2021a ).…”

“…That is why we think that the MNCD classification can quickly provide us with information about the patient's condition that affects his/her QoL as well as the status of his/her principal caregiver. Importantly, with the aim to stop the vicious circle of illness in PD (Santos‐García et al., 2023b ), the detection of burden in the principal caregiver of the patient is important and should be acted on as earlier as possible.…”