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.

Technology-aided leisure and communication: Opportunities for persons with advanced Parkinson's disease.

OBJECTIVE: This study investigated whether simple technology-aided programs could be used to promote leisure and communication engagement in three persons with advanced Parkinson's disease. METHOD: The programs included music and video options, which were combined with (a) text messaging and telephone calls for the first participant, (b) verbal statements/requests, text messaging, and reading for the second participant, and (c) verbal statements/requests and prayers for the third participant. The participants could activate those options via hand movement or vocal emission and specific microswitches. RESULTS: All three participants were successful in activating the options available. The mean cumulative frequencies of option activations were about five per 15-min session for the first two participants and about four per 10-min session for the third participant. CONCLUSION: The results were considered encouraging and relevant given the limited amount of evidence available on helping persons with advanced Parkinson's disease with leisure and communication.

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.

Patients with moderate Alzheimer's disease engage in verbal reminiscence with the support of a computer-aided program: a pilot study.

This study focused on the assessment of a program recently developed for helping patients with moderate Alzheimer's disease engage in computer-mediated verbal reminiscence (Lancioni et al., 2014a). Sixteen participants were involved in the study. Six of them used the original program version with the computer showing a virtual partner posing questions and providing attention and guidance. The other 10 used a slightly modified program version with the computer presenting photos and videos and providing encouragements to talk as well as attention and guidance. Participants were exposed to brief program sessions individually. The results showed that 15 participants (five of those using the first version and all of those using the second version) had a clear and lasting increase in verbal engagement/reminiscence during the intervention sessions with the program. Those 15 participants had mean percentages of intervals with verbal engagement/reminiscence below 10 during baseline and between about 45 and 75 during the intervention. The results' implications and the need for new research were discussed.

Supporting self-managed leisure engagement and communication in post-coma persons with multiple disabilities.

Post-coma persons affected by extensive motor impairment and lack of speech, with or without disorders of consciousness, need special support to manage leisure engagement and communication. These two studies extended research efforts aimed at assessing basic technology-aided programs to provide such support. Specifically, Study I assessed a program for promoting independent stimulation choice in four post-coma persons who combined motor and speech disabilities with disorders of consciousness (i.e., were rated between the minimally conscious state and the emergence from such state). Study II assessed a program for promoting independent television operation and basic communication in three post-coma participants who, contrary to those involved in Study I, did not have disorders of consciousness (i.e., had emerged from a minimally conscious state). The results of the studies were largely positive with substantial levels of independent stimulation choice and access for the participants of Study I and independent television operation and communication for the participants of Study II. The results were analyzed in relation to previous data in the area and in terms of their implications for daily contexts dealing with these persons.

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.

Technology-aided programs for post-coma patients emerged from or in a minimally conscious state.

Post-coma persons in a minimally conscious state (MCS) or emerged/emerging from such state (E-MCS), who are affected by extensive motor impairment and lack of speech, may develop an active role and interact with their environment with the help of technology-aided intervention programs. Although a number of studies have been conducted in this area during the last few years, new evidence about the efficacy of those programs is warranted. These three studies were an effort in that direction. Study I assessed a technology-aided program to enable six MCS participants to access preferred environmental stimulation independently. Studies II and III assessed technology-aided programs to enable six E-MCS participants to make choices. In Study II, three of those participants were led to choose among leisure and social stimuli, and caregiver interventions automatically presented to them. In Study III, the remaining three participants were led to choose (a) among general stimulus/intervention options (e.g., songs, video-recordings of family members, and caregiver interventions); and then (b) among variants of those options. The results of all three studies were largely positive with substantial increases of independent stimulation access for the participants of Study I and independent choice behavior for the participants of Studies II and III. The results were analyzed in relation to previous data and in terms of their implications for daily contexts working with MCS and E-MCS persons affected by multiple disabilities.

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.