Department of Medicine, University of Wisconsin-Madison School of Medicine and Public Health.
Department of Surgery, University of Wisconsin-Madison School of Medicine and Public Health.
Am J Speech Lang Pathol. 2020 Jul 10;29(2S):1094-1109. doi: 10.1044/2020_AJSLP-19-00136.
Purpose Persons with neurodegenerative disease frequently develop comorbid dysphagia as part of their disease process. Current "reactive" approaches to dysphagia management address dysphagia once it manifests clinically and consist of compensatory approaches. The purpose of this article is to propose a paradigm shift in dysphagia management of patients with neurodegenerative disease from a "reactive to proactive" approach by highlighting amyotrophic lateral sclerosis (ALS) and dementia as case examples. Method The authors present several areas of special consideration for speech-language pathologists (SLPs) treating dysphagia in patients with neurodegenerative disease. The drawbacks of historical "reactive" approaches to dysphagia management are described. Concepts of functional reserve for swallowing and homeostenosis are discussed. A "proactive" patient-centered paradigm of care for these patients is proposed with evidence to support its importance. A rationale for use of this approach in patients with ALS and dementia is provided with strategies for implementation. Results When treating dysphagia in patients with neurodegenerative disease, SLPs must balance a variety of factors in their decision making, including disease severity and expected progression, cultural considerations, goals of care, patient empowerment, and caregiver support. Reactive approaches to dysphagia management in these populations are problematic in that they disempower patients by focusing on use of compensatory techniques (e.g., diet modification, postural changes, feeding tube placement). Proactive approaches that employ rehabilitative interventions to increase functional reserve, such as resistance training, may result in improvement or maintenance of swallowing function longer into disease progression. An interdisciplinary team with early SLP involvement is necessary. Conclusions SLPs play a critical role in the management of dysphagia in patients with neurodegenerative disease and should be integrated early in the care of these patients. By focusing on a proactive patient-centered approach, patients with neurodegenerative conditions, such as ALS and dementia, will experience improved quality of life and health outcomes for a longer time.
目的
神经退行性疾病患者在疾病过程中经常会并发吞咽困难。目前针对吞咽困难的“反应性”管理方法是在吞咽困难出现临床症状后才开始治疗，主要采用代偿性方法。本文旨在通过以肌萎缩侧索硬化症（ALS）和痴呆为例，提出一种神经退行性疾病患者吞咽困难管理的范式转变，从“反应性”到“主动性”。
方法
作者提出了几个特别需要注意的领域，供言语语言病理学家（SLP）在治疗神经退行性疾病患者吞咽困难时参考。描述了历史上针对吞咽困难的“反应性”管理方法的缺点。讨论了吞咽功能储备和内稳态的概念。提出了一种针对这些患者的“主动”以患者为中心的护理模式，并提供了支持其重要性的证据。为 ALS 和痴呆患者提供了使用这种方法的理由，并提供了实施策略。
结果
在治疗神经退行性疾病患者的吞咽困难时，SLP 在决策时必须平衡多种因素，包括疾病严重程度和预期进展、文化因素、护理目标、患者赋权和照顾者支持。在这些人群中，针对吞咽困难的“反应性”管理方法存在问题，因为它们通过专注于使用代偿技术（例如饮食调整、体位改变、放置饲管）来削弱患者的能力。采用增加功能储备的康复干预措施的“主动”方法，例如阻力训练，可能会导致吞咽功能在疾病进展过程中更长时间的改善或维持。需要一个由多学科团队组成的团队，尽早让 SLP 参与。
结论
SLP 在神经退行性疾病患者吞咽困难的管理中发挥着关键作用，应该在这些患者的护理早期就整合进来。通过关注以患者为中心的主动方法，ALS 和痴呆等神经退行性疾病患者将体验到更长时间的生活质量和健康结果的改善。
