An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.

Introduction: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention.

Methods: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 - systematic review to identify measures; Stage 2 - consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 - e-Delphi consensus with 57 researchers.

'There's no straight line…' a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study.

Objectives: Behavioral symptoms and communication challenges are particularly apparent in frontotemporal degenerative (FTD) dementias. There is a paucity of psychoeducation programming specifically tailored to the needs of families with FTD. We revised an existing intervention to meet the needs of these families.

Use and Perceived Effectiveness of Communication Modes Reported by Persons With Primary Progressive Aphasia.

Purpose: Primary progressive aphasia (PPA) is a clinical neurodegenerative dementia syndrome characterized by early, selective, and progressive language impairment. PPA onset is gradual, providing time to potentially identify additional or alternative expressive communication modes; however, reports of communication mode use and effectiveness by persons with PPA have not been described. This study characterized the use, frequency, and perceived effectiveness of communication modes reported by individuals with PPA.

Communication Bridge™-2 (CB2): an NIH Stage 2 randomized control trial of a speech-language intervention for communication impairments in individuals with mild to moderate primary progressive aphasia.

Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA.

Communication Partner Engagement: A Relevant Factor for Functional Outcomes in Speech-Language Therapy for Aphasic Dementia.

Objectives: Previous reports established the feasibility of a telehealth model for delivering speech-language therapy via Internet videoconferencing, which connects individuals with primary progressive aphasia (PPA) to an expert speech and language pathologist for treatment. This study reports feasibility of the same telehealth intervention in a larger set of progressive aphasia participants and explores factors potentially influencing functional intervention outcomes.

Methods: Participants with PPA or progressive aphasia in the context of a neurodegenerative dementia syndrome and their communication partners were enrolled into an 8-session intervention, with 3 evaluations (baseline, 2 months, and 6 months postenrollment).

Group Communication Treatment for Individuals with PPA and Their Partners.

Primary progressive aphasia (PPA) is a neurodegenerative syndrome characterized by insidious language deterioration. This young-onset disorder leaves adults with reduced communication skills for participation in social activities. There is limited evidence regarding group treatment for individuals with PPA, though the principles of chronic aphasia groups can be applied to this clinical population.

SOLICITING BCI USER EXPERIENCE FEEDBACK FROM PEOPLE WITH SEVERE SPEECH AND PHYSICAL IMPAIRMENTS.

Brain-computer interface (BCI) researchers have shown increasing interest in soliciting user experience (UX) feedback, but the severe speech and physical impairments (SSPI) of potential users create barriers to effective implementation with existing feedback instruments. This article describes augmentative and alternative communication (AAC)-based techniques for obtaining feedback from this population, and presents results from administration of a modified questionnaire to 12 individuals with SSPI after trials with a BCI spelling system. The proposed techniques facilitated successful questionnaire completion and provision of narrative feedback for all participants.

Supporting communication for patients with neurodegenerative disease.

Background: Communication supports, referred to as augmentative and alternative communication (AAC), are an integral part of medical speech-language pathology practice, yet many providers remain unfamiliar with assessment and intervention principles. For patients with complex communication impairments secondary to neurodegenerative disease, AAC services differ depending on whether their condition primarily affects speech and motor skills (ALS), language (primary progressive aphasia) or cognition (Alzheimer's disease). This review discusses symptom management for these three conditions, identifying behavioral strategies, low- and high-tech solutions for implementation during the natural course of disease.

What's on Your Mind? Conversation Topics Chosen by People With Degenerative Cognitive-Linguistic Disorders for Communication Boards.

Purpose: Conversational topics chosen by a group of adults with degenerative cognitive-linguistic disorders for personalized communication board development were examined. The patient-generated themes commonly selected are presented to guide treatment planning and communication board development.

Method: Communication boards were created for 109 adults as part of a larger research project.

Teaching mindfulness meditation to adults with severe speech and physical impairments: An exploratory study.

People with severe speech and physical impairments may benefit from mindfulness meditation training because it has the potential to enhance their ability to cope with anxiety, depression and pain and improve their attentional capacity to use brain-computer interface systems. Seven adults with severe speech and physical impairments (SSPI) - defined as speech that is understood less than 25% of the time and/or severely reduced hand function for writing/typing - participated in this exploratory, uncontrolled intervention study. The objectives were to describe the development and implementation of a six-week mindfulness meditation intervention and to identify feasible outcome measures in this population.

Noninvasive brain-computer interfaces for augmentative and alternative communication.

Brain-computer interfaces (BCIs) promise to provide a novel access channel for assistive technologies, including augmentative and alternative communication (AAC) systems, to people with severe speech and physical impairments (SSPI). Research on the subject has been accelerating significantly in the last decade and the research community took great strides toward making BCI-AAC a practical reality to individuals with SSPI. Nevertheless, the end goal has still not been reached and there is much work to be done to produce real-world-worthy systems that can be comfortably, conveniently, and reliably used by individuals with SSPI with help from their families and care givers who will need to maintain, setup, and debug the systems at home.

Brain-computer interface with language model-electroencephalography fusion for locked-in syndrome.

Background: Some noninvasive brain-computer interface (BCI) systems are currently available for locked-in syndrome (LIS) but none have incorporated a statistical language model during text generation.

Objective: To begin to address the communication needs of individuals with LIS using a noninvasive BCI that involves rapid serial visual presentation (RSVP) of symbols and a unique classifier with electroencephalography (EEG) and language model fusion.

Methods: The RSVP Keyboard was developed with several unique features.

A clinical screening protocol for the RSVP Keyboard brain-computer interface.

Purpose: To propose a screening protocol that identifies requisite sensory, motor, cognitive and communication skills for people with locked-in syndrome (PLIS) to use the RSVP Keyboard™ brain-computer interface (BCI).

Method: A multidisciplinary clinical team of seven individuals representing five disciplines identified requisite skills for the BCI RSVP Keyboard™. They chose questions and subtests from existing standardized instruments for auditory comprehension, reading and spelling, modified them to accommodate nonverbal response modalities, and developed novel tasks to screen visual perception, sustained visual attention and working memory.