Abstract
Parkinson’s disease (PD) is a neurodegenerative disease which gives a person a high risk of becoming care-dependent. During disease progression, the amount of care concerning activities of daily living can increase, possibly resulting in transition of the people with Parkinson’s disease (PwP) to a care facility. However, there is a lack of knowledge concerning the factors leading to institutionalization of PwP and the consequences for them and their informal caregivers. The aim of this cross-sectional retrospective study was to investigate reasons leading to the transition into an institutional care facility, the process of decision-making and its effects on PwP symptoms and caregiver burden. Participating PwP had to be institutionalized for at most one year after transition at study inclusion. Participants completed a range of semiquantitative questionnaires as well as the caregiving tasks questionnaire. Fourteen patient–caregiver pairs were included. PwP suffered from late-stage PD symptoms with high dependence on help, experiencing several hospitalizations before transition. Analyses revealed a significant decrease in caregiver burden and depressive symptoms of the caregivers after PwP institutionalization. Factors influencing the transition were, e.g., fear of PwP health issues and concerns about caregivers’ health. This study presents new insights into the process of institutionalization and its influence on caregiver burden, including aspects for discussions of physicians with PwP and their caregivers for counselling the decision to move to institutional care.
Highlights
Parkinson’s disease (PD) is a progressive movement disorder constraining the lives of people with PD (PwP) and their relatives [1]
The patients included in this study met the Movement Disorder Society (MDS) clinical diagnostic criteria for PD [14]
The burden perceived by the caregiver is higher when PwP still live at home, and an increasing burden is an important predictor for institutionalization [21,22]
Summary
Parkinson’s disease (PD) is a progressive movement disorder constraining the lives of people with PD (PwP) and their relatives [1]. Non-motor symptoms such as depression, cognitive decline, anxiety, constipation and urinary-urge inconsistency can occur, placing an additional burden on PwP and their relatives [3,4,5,6]. Those relatives, mostly spouses, often become informal caregivers over the course of the disease. Caring for PwP can cause mental and physical distress, resulting in a reduced quality of life and caregiver burden [7,8,9,10] It contains straining negative mental, physical and socioeconomic consequences resulting from caring for a person living with a chronic progressive disability [11]. The process of decision-making concerning PwP is still unclear and needs further evaluation
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