In Parkinson’s disease (PD) patients, the progressive nature of the disease and the variability of disabling motor and non-motor symptoms contribute to the growing caregiver burden (CB) of PD partners and conflicts in their relationships. In advanced stages of the disease, Deep Brain Stimulation (DBS) improves PD symptoms and patients quality of life but the effect of DBS on CB of PD partners seems to be heterogeneous. This review aims to illuminate CB in the context of DBS framing both pre-, peri- and postoperative aspects and to stimulate ims to be illuminated, and further recognition of caregiver burden in partners of PD patients with DBS will be stimulated.
Caregiver burden (CB) has been defined as “the extent to which caregivers perceive that caregiving has an adverse effect on their emotional, social, financial, physical and spiritual functioning” [1] and occurs in the context of providing informal care for relatives with chronic diseases. Parkinson’s disease (PD) is a complex disorder with increasing disabling motor and non-motor symptoms over time, which results in an increased risk of CB in partners of PD. In advanced stages of the disease, higher symptom severity of PD patients is associated with higher CB of their partners [2]. Non-motor symptoms seem to impact CB even more than motor impairment [3]. CB can have detrimental effects on the quality of caregiving, as well as the mental health of the caregiver. Therefore, it is pivotal to engage further family members to uncover and reduce CB and prevent premature institutionalization [4] [5].
In advanced disease stages, device-aided therapies as Deep Brain stimulation (DBS) provide substantial improvement of PD symptoms and quality of life (QOL) [6] [7]. It is of interest, whether caregiver also profit from DBS in terms of CB reduction, since DBS might be associated with side effects or postoperative changes of the marital relationship due to the sudden motor symptom improvement in the sense of burden of normality. This review aims to provide a concise overview of factors contributing to CB in PD in the context of DBS.
There might be several factors contributing to this incongruent development of QOL of patients and caregivers postoperatively:
1. The preexisting neuropsychiatric and medical condition of the caregivers themselves might play a role in the development of postoperative CB [19]. Higher age of the caregiver is one important mediator of postoperative CB [46][20]. The caregiver grows older along with the PD patient and might as well suffer from illnesses. Besides, the preoperative Beck DI epression Inventory (BDI) score is an important predictor of postoperative CB one year after DBS surgery [20]. Thus, the well-being of the caregiver should also be addressed in the context of their PD partners DBS surgery.
2. The postoperative extent of neuropsychiatric symptoms within PD patients significantly influences the CB of their relatives. Postoperatively, CB was shown to be associated with the patients degree of apathy and depression [19]. In PD patients and caregivers, postoperative caregiver burden was significantly related to PD patients BDI score (Beck depression inventory), caregiver-rated attentional impulsiveness of PD patients or patients hypersexuality [2].
3.Postoperative marital conflicts due to changes of the relationship affect CB. DBS surgery profoundly changes caregiver responsibilities and disease-related symptoms due to the sudden relief of disability. With STN-DBS, social maladjustment as a result of the dramatic improvement of the clinical status and identity challenge can occur as part of the “burden of normality” syndrom [21]. 4. DBS is a symptomatic, but not disease-modifying therapy, thus in the long- term, disease progression with re-emergence of motor symptoms, onset of cognitive impairment and loss of autonomy of PD patients might result in re-occurrence of increased CB [22]. This might contribute to the observation that CB increases in caregivers of some PD patients within the first 2 years after STN-DBS [23]. Still, long-term observations of CB are scarce and need to be obtained in larger cohorts of long-term caregivers (Figure 1).