'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. METHODS: We used a quasi-experimental approach. In Phase 1, we sought consumer input about an existing intervention. In Phase 2, we modified the intervention based on the qualitative findings from Phase 1 and tested the revised intervention (STELLA-FTD) for feasibility, acceptability and early-stage efficacy. Outcome for Phase 2 included feasibility data and care partner reactivity to upsetting behaviors. Secondary outcomes included data from unobtrusive sleep monitoring. An inductive analysis of transcripts from the Phase 2 STELLA-FTD focus group provides guidance for future revisions. RESULTS: Fifteen family care partners participated in the Phase 1 focus groups; sixteen care partners enrolled in Phase 2. Testing in Phase 2 revealed that the care partners found our consumer-informed revised intervention both feasible and acceptable. The post-intervention findings suggest STELLA-FTD has the potential to reduce care partner reactivity to upsetting behaviors and to decrease care partner burden. Sleep did not change over the 8-week intervention. CONCLUSIONS: The revised STELLA-FTD intervention was found to be feasible and acceptable, and has potential to improve care partner burden for families living with FTD. Providing the intervention via telehealth maximized access and engaged rehabilitation specialists in providing disease management content. Future revisions will include examination of efficacy and mechanism of action (OHSU IRB # 00022721, ClinicalTrials.gov NCT05338710).

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. METHOD: Forty-one participants with mild-to-moderate PPA completed a structured interview detailing the type, frequency, and perceived effectiveness of 12 potential communication modes, categorized by technology required (no-tech, low-tech, and high-tech). The ratio of modes used was compared across technology categories with a repeated-measures generalized linear model assuming a binomial distribution with an overall Wald chi-square statistic, followed by pairwise post hoc t-test comparisons. RESULTS: Of the 12 communication modes assessed, participants reported using a median of eight (range: 5-10). All participants affirmed using speech, facial expressions, and talking on the phone. Frequency and perceived effectiveness ratings for these three modes were endorsed at the "some/most of the time" level for more than 80% of the participants. No-tech mode use was significantly higher than reported high-tech and low-tech modes (p = .004 and p < .0001, respectively). Even so, while some high-tech modes (apps) and some low-tech modes (nonelectronic augmentative and alternative communication) had fewer users, effectiveness ratings were moderate to high for all but one user. CONCLUSIONS: Persons with mild-to-moderate language impairment due to PPA report using a range of communication modes with moderate-to-high frequency and perceived effectiveness. These outcomes provide practical information when considering mode refinement or expansion during intervention to maximize communication participation. Barriers to modality use may include low awareness or access, which could be queried by future studies and supported by speech and language interventions. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21614262.

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. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized trials. METHOD: Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, active-control, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speech-language intervention arms: (1) Communication Bridge™ a dyadic intervention based in communication participation therapy models that incorporates salient training stimuli or (2) the control intervention a non-dyadic intervention based in impairment therapy models addressing word retrieval and language production that incorporates fixed stimuli. The superiority of Communication Bridge™ over the Control arm will be evaluated using primary outcomes of communication confidence and participation. Other outcomes include accuracy for trained words and scripts. Participants complete two therapy blocks over a 12-month period. Outcomes will be measured at baseline, at each therapy block, and at 12 months post enrollment. DISCUSSION: The CB2 trial will supply Level 2 evidence regarding the efficacy of the Communication Bridge™ intervention delivered in a telehealth service delivery model for individuals with mild to moderate PPA. An important by-product of the CB2 trial is that these data can be used to evaluate the efficacy of speech-language interventions delivered in both trial arms for persons with PPA. The impact of these data should not be overlooked as they will yield important insights examining why interventions work and for whom, which will advance effectiveness trials for speech-language interventions in PPA. TRIAL REGISTRATION: ClinicalTrials.gov NCT03371706 . Registered prospectively on December 13, 2017.

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). Half of the participants were randomized into a "check-in" group and received 3-monthly half-hour sessions postintervention. Mixed linear models with post hoc testing and percent change in area under the curve were used to examine communication confidence over time, as well as the influence of check-in sessions and the role of communication partner engagement on communication confidence. RESULTS: Communication confidence improved at the 2-month evaluation and showed no significant decline at the 6-month evaluation. Item-level analysis revealed gains in communication confidence across multiple communication contexts. Gains and maintenance of communication confidence were only present for the engaged communication partner group and were not bolstered by randomization to the check-in group. DISCUSSION: Internet-based, person-centered interventions demonstrate promise as a model for delivering speech-language therapy to individuals living with PPA. Maintenance is possible for at least 6 months postenrollment and is better for those with engaged communication partners, which supports the use of dyadic interventions.

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. We developed a PPA group treatment model incorporating compensatory strategies from augmentative and alternative communication (AAC), communication partner training from aphasia rehabilitation, and systematic instruction from dementia management. Six modules were designed and delivered to people with PPA and their communication partners in a university clinic setting over a 6-week period. Treatment was provided by graduate clinicians with supervision from a certified speech-language pathologist and faculty member. Primary treatment goals were to provide education about PPA symptoms and progression; to increase practice and use of multimodal communication by people with PPA; and to establish an environment where people with PPA and their partners could connect for training and support. We present pre/post comparisons and satisfaction data provided by five individuals with PPA and their partners in the group. Results suggest that group training is an effective service delivery model. Participants reported gains in both knowledge about PPA and in using many different modalities to communicate. The new compensatory strategies learned provide tools for maintenance and improvement of language use. Participants saw increased confidence and participation in daily activities, and highlighted the value of the PPA group for individuals with this relatively rare condition and their family members.

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. Questionnaire administration required less than five minutes and minimal effort from participants. Results indicated that individual users may have very different reactions to the same system, and that ratings of workload and comfort provide important information not available through objective performance measures. People with SSPI are critical stakeholders in the future development of BCI, and appropriate adaptation of feedback questionnaires and administration techniques allows them to participate in shaping this assistive technology.

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. These AAC principles apply to all neurodegenerative diseases in which common symptoms appear. OBJECTIVES: To present AAC interventions for patients with neurodegenerative diseases affecting speech, motor, language and cognitive domains. Three themes emerge: (1) timing of intervention: early referral, regular re-evaluations and continual treatment are essential; (2) communication partners must be included from the onset to establish AAC acceptance and use; and (3) strategies will change over time and use multiple modalities to capitalize on patients' strengths. CONCLUSIONS: AAC should be standard practice for adults with neurodegenerative disease. Patients can maintain effective, functional communication with AAC supports. Individualized communication systems can be implemented ensuring patients remain active participants in daily activities.

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. One autobiographical topic that each participant would enjoy discussing multiple times was represented on each communication board with 16 pictures and word labels. For this review, topics were collapsed into general themes through a consensus process and examined by gender and age. RESULTS: Sixty unique conversational topics were identified from 109 participants and collapsed into 9 general themes: Hobbies, Family, Travel, Work, Home/Places I've Lived, Sports/Fitness, Religion, Animals, and World War II. Age and gender produced variations in themes chosen, though no significance in rank orders was found across groups. CONCLUSIONS: Topics selected by adults with degenerative cognitive-linguistic disorders for communication boards resemble common conversational adult themes and do not center around basic needs or medical issues. Differences in gender and age for topic selection tend to be based on traditional roles. These general themes should be used when creating personalized communication boards for those who benefit from conversational aids.

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. The weekly intervention was delivered by an instructor in the participant's home, and participants were encouraged to practise daily using audio recordings. The objective adherence to home practice was 10.2 minutes per day. Exploratory outcome measures were an n-back working memory task, the Attention Process Training-II Attention Questionnaire, the Pittsburgh Sleep Quality Index, the Perceived Stress Scale, the Positive and Negative Affect Schedule, and a qualitative feedback survey. There were no statistically significant pre-post results in this small sample, yet administration of the measures proved feasible, and qualitative reports were overall positive. Obstacles to teaching mindfulness meditation to persons with SSPI are reported, and solutions are proposed.

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. Questions were included about sensory skills, positioning, pain interference and medications. The result is a compilation of questions, adapted subtests and original tasks designed for this new BCI system. It was administered to 12 PLIS and 6 healthy controls. RESULTS: Administration required 1 h or less. Yes/no choices and eye gaze were adequate response modes for PLIS. Healthy controls and 9 PLIS were 100% accurate on all tasks; 3 PLIS missed single items. CONCLUSIONS: The RSVP BCI screening protocol is a brief, repeatable technique for patients with different levels of LIS to identify the presence/absence of skills for BCI use. Widespread adoption of screening methods should be a clinical goal and will help standardize BCI implementation for research and intervention. Implications for Rehabilitation People with locked-in syndrome must have certain sensory, motor, cognitive and communication skills to successfully use a brain-computer interface (BCI) for communication. A screening profile would be useful in identifying potentially suitable candidates for BCI.

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. This paper reviews reports in the BCI field that aim at AAC as the application domain with a consideration on both technical and clinical aspects.

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. Individual letters are presented at 2.5 per second. Computer classification of letters as targets or nontargets based on EEG is performed using machine learning that incorporates a language model for letter prediction via Bayesian fusion enabling targets to be presented only 1 to 4 times. Nine participants with LIS and 9 healthy controls were enrolled. After screening, subjects first calibrated the system, and then completed a series of balanced word generation mastery tasks that were designed with 5 incremental levels of difficulty, which increased by selecting phrases for which the utility of the language model decreased naturally. RESULTS: Six participants with LIS and 9 controls completed the experiment. All LIS participants successfully mastered spelling at level 1 and one subject achieved level 5. Six of 9 control participants achieved level 5. CONCLUSIONS: Individuals who have incomplete LIS may benefit from an EEG-based BCI system, which relies on EEG classification and a statistical language model. Steps to further improve the system are discussed.