Neurodegenerative disorders are debilitating diseases that cause the progressive degeneration and/or death of nerve cells, leading to comorbidity dysphagia as part of their pathological process. Among these, amyotrophic lateral sclerosis is characterized by a progressive loss of motor function, which causes excessive muscle weakness, often associated with cognitive deterioration; Parkinson’s disease has a slow but progressive evolution involving movement control and balance; Alzheimer’s disease determines a gradual and irreversible decline in cognitive functions. The swallowing problems, frequently manifested in the intermediate and advanced phases of these diseases, require specific intervention by a multidisciplinary team. The clinic proposes different nutrition strategies that include, among others, behavioral therapy, enteral and parenteral nutrition. The aim of this work is to investigate the various ways of feeding and their consequences on ethical decisions and quality of life. The main databases such as PubMed Medline, CINHAL Complete and Speechbite were interviewed to answer the research questions. It was carried out, in the first instance, a background research to explore the state of art related to the clinical approaches present. Subsequently, the foreground research allowed to analyze the benefits of different procedures and patient/caregiver feedback on quality of life. The survey showed different solutions for the diseases, identifying in enteral nutrition benefits in terms of survival and improvement of quality of life in ALS and Parkinson’s disease. For Alzheimer’s disease, behavioral intervention-based performed by a speech therapist is the only approach with functional benefits. Evidence (which is scarce for Alzheimer’s disease) shows that the patients with ALS, Parkinson’s disease and Alzheimer’s disease experience a better quality of life and an increased survival if the taking charge by an experienced team is done at early stage of the illness development. In addition, the compilation of advance directives can make the process easier. However, further studies could better define the most effective solution.

Gestione della Disfagia e Risvolti Etici: Stato dell'Arte sulle Patologie Neurodegenerative

GRONDA, ALESSIA
2020/2021

Abstract

Neurodegenerative disorders are debilitating diseases that cause the progressive degeneration and/or death of nerve cells, leading to comorbidity dysphagia as part of their pathological process. Among these, amyotrophic lateral sclerosis is characterized by a progressive loss of motor function, which causes excessive muscle weakness, often associated with cognitive deterioration; Parkinson’s disease has a slow but progressive evolution involving movement control and balance; Alzheimer’s disease determines a gradual and irreversible decline in cognitive functions. The swallowing problems, frequently manifested in the intermediate and advanced phases of these diseases, require specific intervention by a multidisciplinary team. The clinic proposes different nutrition strategies that include, among others, behavioral therapy, enteral and parenteral nutrition. The aim of this work is to investigate the various ways of feeding and their consequences on ethical decisions and quality of life. The main databases such as PubMed Medline, CINHAL Complete and Speechbite were interviewed to answer the research questions. It was carried out, in the first instance, a background research to explore the state of art related to the clinical approaches present. Subsequently, the foreground research allowed to analyze the benefits of different procedures and patient/caregiver feedback on quality of life. The survey showed different solutions for the diseases, identifying in enteral nutrition benefits in terms of survival and improvement of quality of life in ALS and Parkinson’s disease. For Alzheimer’s disease, behavioral intervention-based performed by a speech therapist is the only approach with functional benefits. Evidence (which is scarce for Alzheimer’s disease) shows that the patients with ALS, Parkinson’s disease and Alzheimer’s disease experience a better quality of life and an increased survival if the taking charge by an experienced team is done at early stage of the illness development. In addition, the compilation of advance directives can make the process easier. However, further studies could better define the most effective solution.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/20.500.14240/137737