Jensen Ida, Lescher Emily, Stiel Stephanie, Wegner Florian, Höglinger Günter, Klietz Martin
Department of Neurology, Hannover Medical School, 30625 Hannover, Germany.
Hannover Medical School, Institute for General Practice and Palliative Care, 30625 Hannover, Germany.
Brain Sci. 2021 Nov 6;11(11):1470. doi: 10.3390/brainsci11111470.
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.
帕金森病（PD）是一种神经退行性疾病，会使患者面临高度的护理依赖风险。在疾病进展过程中，与日常生活活动相关的护理量可能会增加，这可能导致帕金森病患者（PwP）转至护理机构。然而，对于导致PwP入住护理机构的因素以及这对他们及其非正式护理人员的影响，我们了解不足。这项横断面回顾性研究的目的是调查导致转至机构护理设施的原因、决策过程及其对PwP症状和护理人员负担的影响。参与研究的PwP在转至护理机构后，在纳入研究时最多已入住一年。参与者完成了一系列半定量问卷以及护理任务问卷。共纳入了14对患者-护理人员。PwP患有晚期PD症状，高度依赖他人帮助，在转至护理机构之前经历过多次住院治疗。分析显示PwP入住护理机构后，护理人员的负担和抑郁症状显著减轻。影响转至护理机构的因素包括，例如，对PwP健康问题的担忧以及对护理人员健康的担忧。本研究为入住护理机构的过程及其对护理人员负担的影响提供了新的见解，包括医生与PwP及其护理人员讨论转至机构护理决策时可供参考的方面。
