Supporting communication and social interaction of locked-in persons

Persons in advanced stages of neurological diseases, such as amyotrophic lateral sclerosis, multiple sclerosis, spinal muscular atrophy type I, muscular dystrophies and brainstem stroke may experience complex communication difficulties that lead to social isolation and prevent them from exercising self-determination. A multi-disciplinary approach that addresses the technological gap actually hindering even basic yes/no communication at home, the necessity to develop easy and standardized clinical tools to asses basic high-level cognitive functioning, and the need to improve social interaction in these persons, is of utmost importance to support self-determination.

With a biomedical engineering background, long-term working experience in neuroscience, experience in developing brain-computer interfaces, personal contact with locked-in people, and as promoter of social activities for persons with severe movement restrictions, I strive to develop project ideas to enhance social interaction and quality of life for these persons.

There are three main aims targeting the actual gaps, namely, (i) design and implementation of a personalized and adaptive system able to ensure basic communication through yes/no tasks at home of the users, (ii) design, development and testing of easy-to-use clinical tools to asses high-level cognitive functions for locked-in persons with compromised vision and verbal language, and (iii) pursuit of social activities for locked-in persons such as gaming, co-management of raising awareness initiatives and virtual travelling.

To address these objectives I would need to work in a multi-disciplinary team, composed at least by a neurologist, a speech therapist and a neuropsychologist, in addition to my technical expertise. Ideas to address the above mentioned issues are already outlined. For the time being, resources to pursue these ideas and the search for specialists who are motivated to safeguard the self-determination of locked-in persons are needed.