Journal Article (Review Article) DZNE-2020-06434

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Communication Matters-Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis.

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2018
Frontiers Research Foundation Lausanne

Frontiers in neurology 9, 603 () [10.3389/fneur.2018.00603]

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Abstract: Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be 'the essence of human life' and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

Classification:

Contributing Institute(s):
  1. Translational Neurodegeneration (AG Hermann)
  2. Clinical Dementia Research (Rostock /Greifswald) (AG Teipel)
Research Program(s):
  1. 344 - Clinical and Health Care Research (POF3-344) (POF3-344)

Appears in the scientific report 2018
Database coverage:
Medline ; Creative Commons Attribution CC BY (No Version) ; DOAJ ; OpenAccess ; Clarivate Analytics Master Journal List ; DOAJ Seal ; IF < 5 ; JCR ; SCOPUS ; Web of Science Core Collection
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Institute Collections > ROS DZNE > ROS DZNE-AG Hermann
Institute Collections > ROS DZNE > ROS DZNE-AG Teipel
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 Record created 2020-02-18, last modified 2024-08-09