Reply to “Converse well‐being of locked‐in patients and caregivers”

Aust, Elisa; Linse, Katharina; Rüger, Wolfgang; Joos, M.; Schmitz-Peiffer, Henning; Storch, Alexander; Hermann, Andreas

doi:10.1002/ana.25025

Cited by 1 publication

(1 citation statement)

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“…While HT-AAC technologies can help to prevent the patients' social networks, assuming the role of the caregiver often results in a loss of freedom and of time and energy for self-care as well as in a change of life plans. The size, quality and changes of their personal social network have to be investigated in future to minimize the negative consequences of the disease on family caregivers ( 95 , 96 ) and in consequence to counteract unfavorable influences on patient's decision, e.g. for or against use of HT-AAC devices.…”

Section: Limitations and Pitfalls Of Ht-aac-use And-supplymentioning

confidence: 99%

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

Linse

Aust

Joos³

et al. 2018

Front. Neurol.

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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.

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Section: Limitations and Pitfalls Of Ht-aac-use And-supplymentioning

confidence: 99%