Abstract
For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.
Highlights
Parkinson’s disease (PD) is already one of the most common neurodegenerative disorders, the prevalence of PD is expected to double by the year 2040, and that is due to the aging of the susceptible group [1]
Persons with PD (PwPDs) experience a loss of autonomy in daily life, which leads to a high level of dependency on informal caregivers’ support
Several observations can be made that the diagnosis of PD deeply affects informal caregivers as well, they seem to be left alone in their despair
Summary
Parkinson’s disease (PD) is already one of the most common neurodegenerative disorders, the prevalence of PD is expected to double by the year 2040, and that is due to the aging of the susceptible group [1]. In the progression of the disease, motor and non-motor symptoms as well as the need for daily support increase, which in turn influences emotional well-being and social functioning [4]. Persons with PD (PwPDs) experience a loss of autonomy in daily life (e.g., in dressing, personal hygiene, nutrition, mobility, taking medication, etc.), which leads to a high level of dependency on informal caregivers’ support. It can be observed that a high proportion of care is provided informally from the care recipient’s social network with little to no financial compensation [10]. Motor and non-motor symptoms, as well as the need for daily support increase. The patients’ loss of autonomy in daily life leads to a high level of dependency on informal caregivers’ support, which strongly correlates with the perceived stress of informal caregivers [26,27]. Schulz et al showed that emotional stress in informal caregivers is an independent risk factor for patient’s mortality [17]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
