Augmentative and Alternative Communication
About 80% of individuals with ALS are unable to speak by the time of their deaths, thus, they require AAC support to communicate in daily life (Beukelman & Mirenda, 2012). Research indicates that the acceptance of AAC devices among ALS patients has increased during the past few years (Ball et al., 2007). Some studies have found that 96% of individuals with ALS who complete an AAC assessment and for whom AAC devices are recommended, accept, acquire and use the AAC technology to support their communication until within a few days or weeks prior to death (Ball et al., 2007 cited in McKelvey, Evans, Kawai & Beukelman, 2012). According to 33% of interviewed caregivers, persons with ALS used AAC technology daily to stay connected with others, while 12% reported weekly use and 35.3% reported occasional use (Oken et al., 2006). AAC usage also depends on the degree of social support that individuals with ALS receive. The greater the social support with AAC devices, the more likely will the person with ALS increase duration of AAC technology use (Ball et al., 2005 cited in Ball et al., 2007).
As soon as an individual gets diagnosed with ALS, the SLP has the responsibility to monitor the patient’s speech performance to ensure that the patient has time to choose, acquire and learn to operate an AAC system before the speech deteriorates any further (Beukelman & Mirenda, 2012). In general, exploration of AAC options should begin when speech has slowed to about 125 words per minute (compared with 190 words per minute by typical adult speakers) and/ or intelligibility is inconsistent in adverse listening situations. The Speech Intelligibility Test-Sentence Version can be conducted by the SLP and then, an AAC assessment can be completed. Based on studies conducted by Richter, Ball, Beukelman, Lasker and Ullman (2003), there is a high level of agreement among those with ALS and their caregivers, with clear preference for using AAC strategies instead of attempting to decipher unintelligible natural speech.
In general, people affected by ALS are aware of its degenerative nature and with timely assessment by the SLP, they are able to select their AAC systems and learn to operate them while they can still use their natural speech. Thus, it is important to anticipate the future loss of motor, communication and other skills and prepare the person accordingly.
The most common early symptom associated with ALS is weakness (Wijesekera & Leigh, 2009), with approximately one third reporting leg weakness and one quarter presenting with bulbar (brainstem) weakness, manifested by dysarthria and dysphagia (Beukelman & Mirenda, 2012). As the disease progresses, motor weakness may become pervasive. Thus, it is important to be aware that adults affected by ALS may require frequent system changes, such as motor control options and system position, as their abilities deteriorate and living situations change. Individuals usually have an AAC system that includes a range of AAC modalities, encompassing both low-and high-technology options (McKelvey et al., 2012). Extraocular muscles controlling eye movements are usually unaffected, allowing for computer-based devices using eye tracking to produce messages (Beukelman & Mirenda, 2012). However, the individual may also need a low-tech strategy when eye-tracking technology is not convenient or available.
Beukelman and Lasker (1988) found that people with ALS use unaided or low technology AAC more frequently with familiar communication partners and high technology AAC more frequently with unfamiliar partners (Oken et al., 2006). Based on Doyle and Phillips’ case studies (2001), persons with ALS use technology more when they are in the middle stages of the disease, and rely less on AAC technology as severity of the motor impairment increases.
According to the statements of caregivers who cared for individuals with ALS, the majority of individuals with ALS use computer-based systems with specialized software such as EZ Keys, followed by dedicated text-to-speech devices such as the LightWriter SL87 and a symbol or word based dynamic display dedicated devices such as DynaVox 3100 (Oken et al., 2006).
AAC interventionists frequently recommend communication systems including speech-generating devices, thus, despite the loss of speech, persons with ALS may continue to fulfill the roles that they consider to be important in their lives (Doyle & Phillips, 2001; cited in Oken et al., 2006). Many types of technology can store and retrieve messages to fulfill communication needs in areas, including basic needs, sharing information, maintaining social closeness and follow the rules of social etiquette (Light, 1988; Oken et al., 2006).
The SLP should be aware that some individuals with ALS may demonstrate cognitive problems, which may interfere with the communication and the learning of new communication techniques (Yorkston, Beukelman, Strand & Hakel, 2010). Thus, cognitive skills have to be considered before recommending complex communication systems.
The Communication Device Use Checklist can be used in the clinical evaluation, which aids in the identification of important areas of communication need and guiding message selection (Oken et al., 2006). In addition, it allows to assess the importance of communication purposes, which may assist in device selection for the individual wanting to use AAC technology. This checklist could also be used as a guide for follow-up treatment, if the AAC device is used longitudinally. The administration of the checklist pre- and post-intervention would also help determine the effect of training on AAC use. It is noteworthy that this checklist can be used with any person with severe dysarthria or anarthria over time to document changes related to the frequency and importance of different communication purposes that occur.
Communication Device Use Checklist: Purposes
Communication purpose Frequency Importance Mode
____________________________________________________________________________________________________________________________________
Expressing needs and wants
Calling for help
Getting needs met
Clarifying needs with caregivers
Giving instructions or directions to others
Exchanging information
Discussing important issues or concerns
Conversing about health care
Conversing about work
Talking about religious/ philosophical issues
Developing social closeness
Expressing feelings
Staying connected with family and friends
Telling stories
Chatting
Having casual conversation
Comforting others
Being funny
Flirting or being romantic
Fulfilling social etiquette
Being polite
Other (please specify)
References:
Ball, L. J., Beukelman, D. R., Anderson, E., Bilyeu, D. V., Robertson, J., & Pattee, G. L. (2007). Duration of AAC technology use by persons with ALS. Journal of Medical Speech-Language-Pathology , 371-381.
Ball, L. J., Beukelman, D. R., Fager, S., Nordness, A. S., & Pattee, G. L. (2010). Late AAC assessment for individuals with ALS. Journal of Medical Speech-Language Pathology.
Fried-Oken, M., Fox, L., Rau, M. T., Tullman, J., Baker, G., Hindal, M., et al. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication , 209-221.
McKelvey, M., Evans, D. L., Kawai, N., & Beukelman, D. (2012). Communication style of persons with ALS as recounted by surviving partners. Augmentative and Alternative Communication, 232-242.
As soon as an individual gets diagnosed with ALS, the SLP has the responsibility to monitor the patient’s speech performance to ensure that the patient has time to choose, acquire and learn to operate an AAC system before the speech deteriorates any further (Beukelman & Mirenda, 2012). In general, exploration of AAC options should begin when speech has slowed to about 125 words per minute (compared with 190 words per minute by typical adult speakers) and/ or intelligibility is inconsistent in adverse listening situations. The Speech Intelligibility Test-Sentence Version can be conducted by the SLP and then, an AAC assessment can be completed. Based on studies conducted by Richter, Ball, Beukelman, Lasker and Ullman (2003), there is a high level of agreement among those with ALS and their caregivers, with clear preference for using AAC strategies instead of attempting to decipher unintelligible natural speech.
In general, people affected by ALS are aware of its degenerative nature and with timely assessment by the SLP, they are able to select their AAC systems and learn to operate them while they can still use their natural speech. Thus, it is important to anticipate the future loss of motor, communication and other skills and prepare the person accordingly.
The most common early symptom associated with ALS is weakness (Wijesekera & Leigh, 2009), with approximately one third reporting leg weakness and one quarter presenting with bulbar (brainstem) weakness, manifested by dysarthria and dysphagia (Beukelman & Mirenda, 2012). As the disease progresses, motor weakness may become pervasive. Thus, it is important to be aware that adults affected by ALS may require frequent system changes, such as motor control options and system position, as their abilities deteriorate and living situations change. Individuals usually have an AAC system that includes a range of AAC modalities, encompassing both low-and high-technology options (McKelvey et al., 2012). Extraocular muscles controlling eye movements are usually unaffected, allowing for computer-based devices using eye tracking to produce messages (Beukelman & Mirenda, 2012). However, the individual may also need a low-tech strategy when eye-tracking technology is not convenient or available.
Beukelman and Lasker (1988) found that people with ALS use unaided or low technology AAC more frequently with familiar communication partners and high technology AAC more frequently with unfamiliar partners (Oken et al., 2006). Based on Doyle and Phillips’ case studies (2001), persons with ALS use technology more when they are in the middle stages of the disease, and rely less on AAC technology as severity of the motor impairment increases.
According to the statements of caregivers who cared for individuals with ALS, the majority of individuals with ALS use computer-based systems with specialized software such as EZ Keys, followed by dedicated text-to-speech devices such as the LightWriter SL87 and a symbol or word based dynamic display dedicated devices such as DynaVox 3100 (Oken et al., 2006).
AAC interventionists frequently recommend communication systems including speech-generating devices, thus, despite the loss of speech, persons with ALS may continue to fulfill the roles that they consider to be important in their lives (Doyle & Phillips, 2001; cited in Oken et al., 2006). Many types of technology can store and retrieve messages to fulfill communication needs in areas, including basic needs, sharing information, maintaining social closeness and follow the rules of social etiquette (Light, 1988; Oken et al., 2006).
The SLP should be aware that some individuals with ALS may demonstrate cognitive problems, which may interfere with the communication and the learning of new communication techniques (Yorkston, Beukelman, Strand & Hakel, 2010). Thus, cognitive skills have to be considered before recommending complex communication systems.
The Communication Device Use Checklist can be used in the clinical evaluation, which aids in the identification of important areas of communication need and guiding message selection (Oken et al., 2006). In addition, it allows to assess the importance of communication purposes, which may assist in device selection for the individual wanting to use AAC technology. This checklist could also be used as a guide for follow-up treatment, if the AAC device is used longitudinally. The administration of the checklist pre- and post-intervention would also help determine the effect of training on AAC use. It is noteworthy that this checklist can be used with any person with severe dysarthria or anarthria over time to document changes related to the frequency and importance of different communication purposes that occur.
Communication Device Use Checklist: Purposes
Communication purpose Frequency Importance Mode
____________________________________________________________________________________________________________________________________
Expressing needs and wants
Calling for help
Getting needs met
Clarifying needs with caregivers
Giving instructions or directions to others
Exchanging information
Discussing important issues or concerns
Conversing about health care
Conversing about work
Talking about religious/ philosophical issues
Developing social closeness
Expressing feelings
Staying connected with family and friends
Telling stories
Chatting
Having casual conversation
Comforting others
Being funny
Flirting or being romantic
Fulfilling social etiquette
Being polite
Other (please specify)
References:
Ball, L. J., Beukelman, D. R., Anderson, E., Bilyeu, D. V., Robertson, J., & Pattee, G. L. (2007). Duration of AAC technology use by persons with ALS. Journal of Medical Speech-Language-Pathology , 371-381.
Ball, L. J., Beukelman, D. R., Fager, S., Nordness, A. S., & Pattee, G. L. (2010). Late AAC assessment for individuals with ALS. Journal of Medical Speech-Language Pathology.
Fried-Oken, M., Fox, L., Rau, M. T., Tullman, J., Baker, G., Hindal, M., et al. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication , 209-221.
McKelvey, M., Evans, D. L., Kawai, N., & Beukelman, D. (2012). Communication style of persons with ALS as recounted by surviving partners. Augmentative and Alternative Communication, 232-242.