Predictors of the change in burden, strain, mood, and quality of life among caregivers of Parkinson's disease patients

Abstract

Background and Objective Caregiver burden in Parkinson's disease (PD) has been studied in many cross‐sectional studies but poorly in longitudinal ones. The aim of the present study was to analyze the change in burden, strain, mood, and quality of life (QoL) after a 2‐year follow‐up in a cohort of caregivers of patients with PD and also to identify predictors of these changes. Patients and Methods PD patients and their caregivers who were recruited from January/2016 to November/2017 from 35 centers of Spain from the COPPADIS cohort were included in the study. They were evaluated again at 2‐year follow‐up. 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 baseline (V0) and at 2‐year follow‐up (V2). General linear model repeated measure and lineal regression models were applied. Results Significant changes, indicating an impairment, were detected on the total score of the ZCBI (p < 0.0001), CSI (p < 0.0001), BDI‐II (p = 0.024), and EUROHIS‐QOL8 (p = 0.002) in 192 PD caregivers (58.82 ± 11.71 years old; 69.3% were females). Mood impairment (BDI‐II; β = 0.652; p < 0.0001) in patients from V0 to V2 was the strongest factor associated with caregiver's mood impairment after the 2‐year follow‐up. Caregiver's mood impairment was the strongest factor associated with an increase from V0 to V2 on the total score of the ZCBI (β = 0.416; p < 0.0001), CSI (β = 0.277; p = 0.001), and EUROHIS‐QOL (β = 0.397; p = 0.002). Conclusion Burden, strain, mood, and QoL were impaired in caregivers of PD patients after a 2‐year follow‐up. Mood changes in both the patient and the caregiver are key aspects related to caregiver burden increase.

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

“…Our study has some limitations, some of them previously reported in a recent publication [16], such as a loss to follow-up of nearly 30% of the subjects…”

“…Recently, we published the largest (N = 192) and longest (2-year follow-up) prospective study in which predictors of a change in burden, strain, mood, and QoL in the principal caregiver of PD patients were identified [ 16 ]. Mood changes in the patient were the main factors affecting mood in the caregiver and mood changes in the caregiver was identified as the main factor impacting on strain, burden and QoL of the caregiver.…”

Vortioxetine Improves Depressive Symptoms and Cognition in Parkinson’s Disease Patients with Major Depression: An Open-Label Prospective Study

“…Depression occurs in around 35% of patients with PD and is often persistent [ 39 ]. Many cross-sectional and prospective longitudinal studies have demonstrated that depression is a key factor impacting not only patients’ QoL, but also principal caregivers’ QoL too [ 3 , 40 , 41 , 42 ]. The underlying mechanisms of depression in PD are not known in detail, but changes in brain structure, signaling by neurotransmitters, and levels of inflammatory and neurotrophic factors are all suggested to contribute to its development [ 39 , 43 ].…”

The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson’s: A Qualitative Study

“…Whilst at home, there is an increased reliance on family members, frequently a spouse, adult ofspring, or sibling [3], who become caregivers providing physical, social, domestic, and emotional care in the home, for up to 16 hours per day [4]. Te caring demands related to reduced mobility and multiple fuctuating, incapacitating, and upsetting nonmotor symptoms (NMSs) of Parkinson's have been shown to negatively afect the physical, social, fnancial, psychological, and quality of life (QoL) of family members [5][6][7][8][9], with a higher burden compared to caregivers of older adults in general [10].…”

“…It has been found that, across conditions, such informal (unpaid) care had an estimated value of £132 billion annually in 2015, almost double its value in 2001 [13]. Despite caregiver strain being well documented, especially in relation to the burden of specifc Parkinson's symptoms including signifcant impairment and falls; behavioural and cognitive changes; and neuropsychiatric symptoms of depression, apathy, and impulse disorders [5][6][7][8][9], and the roles and key activities assumed [4,10], there is limited knowledge about the lived experience of family-caregivers in relation to their perception of service needs and provision for those with late-stage Parkinson's who have high degrees of disability. It is important to understand in depth the caregivers' experience and perception of service provision to comprehend the gaps they perceive and therefore often fll.…”