Abstract

Parkinson’s disease (PD) is a neurodegenerative disorder, which leads to reduced health-related quality of life (HR-QoL) and autonomy in advanced stages of the disease. Hence, people with PD (PwPD) are in need of help, which is often provided by informal caregivers, especially spouses. This might influence the relationship satisfaction in patients and their spousal caregivers. Additionally, previous studies have shown that a reduced relationship satisfaction may result in mental disorders and reduced physical health. The aim of this study is to identify factors influencing PwPD and their caregivers’ relationship satisfaction in a cross-sectional observational study. Analyses revealed an overall satisfying relationship, measured by the Quality of Marriage Index, in PwPD (n = 84) and their caregivers (n = 79). Relationship satisfaction in PwPD mildly decreased with reduced HR-QoL and more severe depressive symptoms. Reduced relationship satisfaction in caregivers was significantly associated with decreased HR-QoL, higher caregiver burden, more severe depressive symptoms and increased neuropsychiatric symptoms in PwPD. Further studies are needed to investigate the influence of the identified factors over time and if relationship satisfaction has a reciprocal impact on caregiver burden, HR-QoL as well as mental and physical health.

Highlights

  • Parkinson’s disease (PD) is the second most common neurodegenerative disorder with an estimated prevalence of 0.5% of the population in Germany [1]

  • Due to the progressive nature of motor and non-motor symptoms in people with PD (PwPD), patients’ health-related quality of life (HR-QoL) and autonomy is reduced in advanced stages of the disease and patients are in need of help, which is often provided by informal caregivers, especially spouses [3,4,5,6,7]

  • PDQ-8 displayed an average of 35.1 points (±18.1; min 3.1; max 84.4), indicating moderate HR-QoL restrictions of the patients in general

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Summary

Introduction

Parkinson’s disease (PD) is the second most common neurodegenerative disorder with an estimated prevalence of 0.5% of the population in Germany [1]. Due to the progressive nature of motor and non-motor symptoms in people with PD (PwPD), patients’ health-related quality of life (HR-QoL) and autonomy is reduced in advanced stages of the disease and patients are in need of help, which is often provided by informal caregivers, especially spouses [3,4,5,6,7]. With advanced stages of the disease, increased cognitive impairment contributes to the need of help. Taking care of a patient with PD has been considered as leading to physical and psychological distress in caregivers, resulting in reduced quality of life and increased caregiver burden [3,12,13,14,15]. Previous studies showed that alexithymia, the disability of recognition and feelings of emotions, is markedly increased in PwPD, which might lead to the fact that PwPD neglect their caregivers’ negative feelings and burden [16,17]

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