Quality‐of‐life perception by Parkinson's disease patients and caregivers

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Parkinson's disease (PD) is a chronic, progressively debilitating condition characterized by complex motor and non‐motor symptoms, which have a significant impact not only on patients but also on their spouses and partners.1 As the disease progresses, both the individuals with PD and their spouses/partners often undergo the difficult challenge of adapting to the disruptions in family roles, loss of employment, stigmatization, coping with increasing physical and sometimes mental disability, and economic consequences, all of which affect satisfaction with life of both groups.2 PD is associated with motor problems, mood disturbances, communication difficulties, as well as impaired sexual and autonomic functioning. Spouses/partners frequently serve as caregivers (CG), and although typically in better physical health, they may suffer from emotional stress, which sometimes corresponds poorly to the level of disability of the patient, in some cases exceeding the degree of suffering of the patient.3 They may require the assistance of a psychologist or social worker to help them cope.4 Advanced age of the couples complicates their adaptation to new conditions and often strains their interpersonal relationships.
Suzukamo et al.5 concluded that the effect of the psychological burden on the quality of life (QoL) in patients with PD was even greater than the severity of the disease itself. This finding suggests that, in addition to any pharmacological efforts to overcome parkinsonian symptoms, psychological intervention may also be important in improving the patients’ and CG's QoL. Supportive interpersonal family or partnership ties yield numerous emotional, physical and instrumental benefits, helping to buffer stress, enhance psychological well‐being and attenuate declines in health. Negative interactions or stressors, such as critical or insensitive behaviour, unwarranted advice, resentment, mockery or rejection, can lead to social withdrawal and distress for both the patient and the spouse.6
Under these circumstances, patients may under‐ or overestimate the stress and effects on QoL of the CG and vice versa. Previous studies revealed that the mere presence of the CG (spouses or adult offspring) during the interview resulted in significant overestimation by patients with PD of their own disability, and they rated themselves as less functional than did the CG.7
The purpose of the present preliminary study was to examine patient‐CG agreements regarding their points of view on the QoL of patients with PD, the QoL of the CG and the strain on the CG.
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