A basic technology-aided programme for leisure and communication of persons with advanced amyotrophic lateral sclerosis: performance and social rating.

PURPOSE: This study assessed (a) the impact of a technology-aided programme on the leisure and communication engagement of persons with advanced amyotrophic lateral sclerosis (ALS) and (b) the opinion of rehabilitation and care personnel regarding the programme. METHOD: The programme's impact was assessed with four participants who were allowed to activate leisure and communication options through basic responses (e.g. knee, finger or lip movements) and microswitches. Forty-two care and health professionals rated the programme after watching video clips of persons with ALS (three of the four involved in this study and three involved in previous studies) during and outside of the programme. RESULTS: The programme was effective with all participants. Their mean percentages of session time with independently initiated leisure and communication engagements were zero during baseline and increased to between nearly 70 and 80 during the intervention. The care and health professionals rated the technology-aided programme as beneficial for the participants' positive engagement and social image, fairly practical for daily contexts and interesting from a personal standpoint. CONCLUSIONS: The programme might be viewed as a viable resource for persons with advanced ALS. Implications for Rehabilitation A programme characterised by versatility, simplicity and relatively low cost could be considered practically relevant for persons with ALS and their contexts. A programme that is effective in fostering participants' independent leisure and communication engagement and is positively rated by care and rehabilitation personnel is more likely to be accepted and used with consistency. Any programme directed at persons affected by ALS needs to be adapted to the persons' progressive deterioration, starting from the response and microswitch used for accessing the programme's options.

Assisting persons with advanced amyotrophic lateral sclerosis in their leisure engagement and communication needs with a basic technology-aided program.

BACKGROUND: Eye-tracking communication devices and brain-computer interfaces are the two resources available to help people with advanced amyotrophic lateral sclerosis (ALS) avoid isolation and passivity. OBJECTIVE: This study was aimed at assessing a technology-aided program (i.e., a third possible resource) for five patients with advanced ALS who needed support for communication and leisure activities. METHODS: The participants were exposed to baseline and intervention conditions. The technology-aided program, which was used during the intervention, (a) included the communication and leisure options that each participant considered important for him or her (e.g., music, videos, statements/requests, and text messaging) and (b) allowed the participant to access those options with minimal responses (e.g., finger movement or eyelid closure) monitored via microswitches. RESULTS: The participants started leisure and communication engagement independently only during the intervention (i.e., when the program was used). The mean percentages of session time spent in those forms of engagement were between about 60 and 80. Preference checks and brief interviews indicated that participants and families liked the program. CONCLUSIONS: The program might be viewed as an additional approach/resource for patients with advanced ALS.

Effects of response-related music stimulation versus general music stimulation on positive participation of patients with Alzheimer's disease.

OBJECTIVE: Assessing the effects of response-related music stimulation versus general (response-unrelated) music stimulation on positive participation of 11 new patients with Alzheimer's disease. METHOD: The patients were functioning in the severe and low-moderate ranges of the disease. Positive participation included behaviors such as, singing or rhythmic movements and smiles. Both music conditions relied on the display of music/song videos on a computer screen. In the response-related (active) condition, the patients used a simple hand response and a microswitch to determine music stimulation inputs. In the general (unrelated/passive) condition, music stimulation was automatically presented throughout the sessions. RESULTS: Data showed that six of the 11 patients had higher levels of positive participation in the response-related stimulation condition. The remaining five patients did not have differences between the two conditions. CONCLUSION: Based on this evidence and previous findings, one might consider the use of the active condition beneficial for daily programs.

A computer-aided program for helping patients with moderate Alzheimer's disease engage in verbal reminiscence.

This study assessed a simple computer-aided program for helping patients with moderate Alzheimer's disease engage in verbal reminiscence. In practice, the program was aimed at fostering the patient's verbal engagement on a number of life experiences/topics previously selected for him or her and introduced in the sessions through a friendly female, who appeared on the computer screen. The female asked the patient about the aforementioned experiences/topics, and provided him or her with positive attention, and possibly verbal guidance (i.e., prompts/encouragements). Eight patients were involved in the study, which was carried out according to non-concurrent multiple baseline designs across participants. Seven of them showed clear improvement during the intervention phase (i.e., with the program). Their mean percentages of intervals with verbal engagement/reminiscence ranged from close to zero to about 15 during the baseline and from above 50 to above 75 during the intervention. The results were discussed in relation to previous literature on reminiscence therapy, with specific emphasis on the need for (a) replication studies and (b) the development of new versions of the technology-aided program to improve its impact and reach a wider number of patients.

Two men with advanced amyotrophic lateral sclerosis operate a computer-aided television system through mouth or throat microswitches.

This study assessed a simple technology to enable two men affected by amyotrophic lateral sclerosis, in an advanced stage (i.e., with pervasive motor disabilities and lack of speech), to operate a computer-aided television system. The technology included microswitches, a portable computer, an interface connecting the microswitches to the computer, a commercial software package to allow the possibility of watching television via computer, and specific software to allow microswitch activations to be recorded as forward commands for channel change. The participants (a) gained control over the television programs to watch or not to watch (i.e., through channel changes) and (b) showed increased attention to the programs (i.e., an increase in their watching time). The practical relevance of the findings, the integration of the technology used in this study within the participants' wider recreation and communication program, and ways of extending the research were discussed.

Technology to help persons with extensive neuro-motor impairment and lack of speech with their leisure occupation and communication.

These two studies were aimed at extending the assessment of technology-aided programs to enhance leisure occupation or communication with persons with extensive neuro-motor impairment and lack of speech. Specifically, Study I implemented the program for leisure occupation with two post-stroke patients. Study II implemented the program for communication with two persons affected by amyotrophic lateral sclerosis (ALS). In Study I, a computer system presented the participants with a variety of stimuli. The participants could select/access those stimuli by microswitch activation or could bypass them by abstaining from microswitch responses. In Study II, the participants used a computer-aided telephone system that allowed them to choose via microswitch activation the persons to call. On the computer screen, they also had words and phrases that they could activate during the calls to influence the conversation with the persons called. Data from both studies were largely positive. The post-stroke patients showed high levels of stimulus selection (access) and extended engagement. The patients with ALS were able to make phone calls and to select the words/phrases to influence the conversations. The relevance of technology-aided programs for leisure occupation and communication of persons with extensive multiple disabilities was discussed.

A voice-sensitive microswitch for a man with amyotrophic lateral sclerosis and pervasive motor impairment.

OBJECTIVE: To assess a voice-sensitive microswitch for a 67-year-old man with amyotrophic lateral sclerosis (ALS) who had difficulties continuing to use an optic microswitch through small chin movements. METHOD: The man used the microswitches in combination with a computer-aided program to (a) access preferred songs and videos or make requests, and (b) operate a messaging system to communicate with his wife and sons. To assess the man's performance with the two microswitches, we alternated sessions with one microswitch with sessions with the other. RESULTS: The man's performance with the new microswitch was apparently more efficient (i.e. he could generally activate the new microswitch with a single attempt while he needed a mean of about two attempts for each activation of the optic microswitch). The man also developed a clear preference for the new microswitch. CONCLUSION: Technology updates are critical within programs for persons with motor degeneration. IMPLICATIONS FOR REHABILITATION: A microswitch that can be used efficiently and without effort is critically important for a person with ALS. The microswitch can be used with programs that allow the person to manage leisure stimulus events, request opportunities and/or text messaging communication. The microswitch needs to be updated (changed) in relation to the person's physical deterioration.

A man with amyotrophic lateral sclerosis uses a mouth pressure microswitch to operate a text messaging system with a word prediction function.

OBJECTIVE: To assess whether a man with amyotrophic lateral sclerosis could benefit from using (a) a mouth pressure microswitch instead of an optic microswitch activated via head movement and (b) a special word prediction function within a text messaging system. METHOD: Initially, both microswitches were used for operating the text messaging system, and their effectiveness and the man's preference were assessed. Subsequently, only the mouth microswitch was used and the messaging system was provided with a word prediction function. RESULTS: The man was more efficient/rapid in using the text messaging (i.e., in writing) with the mouth microswitch and preferred such a microswitch. Similarly, he was more rapid in writing when the word prediction function was added (as opposed to the initial phase of the study when such function was not available) and preferred to use it. CONCLUSION: Technology updates are critical in helping persons with motor degeneration.

Self-regulated music stimulation for persons with Alzheimer's disease: impact assessment and social validation.

OBJECTIVE: To assess the impact and the social rating of an active music condition (in which 10 patients with Alzheimer's disease regulated their music input) vs. a passive music condition. METHOD: In the active condition, the patients used a simple hand response and a microswitch to activate music stimulation periods. In the passive condition, music stimulation was prearranged and continued through the sessions. The active and passive stimulation sessions were preceded and followed by control (non-stimulation) sessions. RESULTS: The active condition sessions showed an increase in the patients' indices of positive participation (e.g., singing or music-related movements, and smiles) similar to that observed in the passive condition sessions. Social raters (140 psychology students) favored the active condition on a six-item questionnaire dealing, among others, with conditions' suitability, respect of patients' dignity and independence, and practicality. CONCLUSION: An active music stimulation condition can be viable, effective, and socially preferable.

Technology-aided programs for assisting communication and leisure engagement of persons with amyotrophic lateral sclerosis: two single-case studies.

Technology-aided programs for assisting communication and leisure engagement were assessed in single-case studies involving two men with amyotrophic lateral sclerosis (ALS). Study I involved a 51-year-old man with a virtually total loss of his motor repertoire and assessed a technology-aided program aimed at enabling him to (a) write and send out text messages and have incoming messages read to him and (b) establish videophone connections with his children (i.e., establish video contact and communicate with them). Study II involved a 66-year-old man with virtually no motor behavior and apparent depression and assessed a technology-aided program aimed at enabling him to (a) engage in leisure activities and make requests for basic needs and (b) use a low-demand messaging system. The results of both studies were highly encouraging. The participant of Study I could use the technology-aided program for effective communication and social interaction with multiple partners as well as for family interaction. The participant of Study II could use the technology-aided program for leisure engagement, requests, and basic family contacts/communication. The implications of technology for helping persons with severe ALS levels maintain an active and constructive role are discussed.