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Molly Doyle MS CCC
Barbara Phillips, MA, OTR
Las Floristas Center for Applied Rehabilitation Technology (CART)
Rancho Los Amigos National Rehabilitation Center
Adapted from Doyle M. and Phillips B. (2001): Trends in AAC Use by Individuals with ALS. Augmentative and Alternative Communication (Volume 17 No. 3 pp. 167-178)
The majority of individuals with Amyotrophic Lateral Sclerosis (ALS) benefit from augmentative and alternative communication (AAC). Different AAC approaches are used depending upon an individual's functional status, the purpose(s) of communication, the familiarity of the communication partner and the environment (Doyle and Phillips, 2001). Stages of AAC intervention have been identified (Kazandjian (1998). Early, middle and late stages reflect the changes in functional status and subsequent changes in communication needs. Trends in the types of AAC methods used, specifically no tech, low tech and high tech, appear to correspond to these stages (Doyle and Phillips, 2001). Case studies will be shared to demonstrate that in the early stage, individuals tend to rely on no or low tech methods; in the middle stage, they rely on high tech systems and at the late stage, often return to no or low tech methods.
ALS is a progressive, fatal disease in which the motor neurons gradually cease to function. Individuals with ALS generally experience both upper and lower motor symptoms (Doyle and Phillips, 2001). As muscles deteriorate, the impact on functional status is severe and extensive. Individuals experience difficulty swallowing, speaking, breathing, ambulating, and managing fine motor tasks for self-care. Following diagnosis, approximately 50% of individuals with ALS will live 3-4 years. Approximately 20% live more than 5 years and approximately 10% live more than 10 years. Occasionally, patients will live as long as 20 years (Mitsumoto & Norris, 1994).
There are various subtypes as well as classification systems for ALS (Caroscio, Mulvihill, Sterling, & Abrams, 1987). Grouping individuals according to location of initial symptoms, bulbar or spinal, provides information useful for AAC system selection (Mathy, 1996; Mathy, Yorkston & Gutmann, 2000). Individuals diagnosed with bulbar ALS, experience speech and swallowing difficulties first. In spinal ALS, initial symptoms generally occur in the upper or lower extremities.
Whether symptoms begin in the bulbar or spinal regions, it is expected that most individuals with ALS will need some type of AAC system during the disease process. As speech production becomes more impaired, individuals become increasingly more dependent on AAC (Yorkston, Miller & Strand, 1995). The types of methods used are determined by the severity of speech impairment, functional status, and communication needs. AAC methods and purpose often change as the disease progresses (Doyle and Phillips, 2001).
This presentation will describe speech production changes in ALS and the need for AAC, review the psychosocial and cognitive issues that influence AAC acceptance and use, and discuss trends in system type and use according to stages of AAC intervention. Four case studies will describe the primary types of AAC approaches used at each stage of intervention.
Individuals with ALS usually present with a mixed dysarthria. Although speech production declines at varying rates and patterns (Yorkston, Miller & Strand, 1995), the majority of individuals benefit from some type of AAC system. The introduction of AAC is determined by how functional or understandable the individual is in daily communication situations. Clinicians may utilize speaking rate and intelligibility measures as part of their assessment. Other factors, specifically mobility and upper extremity function determine what features are needed in an AAC system (Yorkston, Strand, Miller, Hillel, & Smith 1993; Mathy, Yorkston, & Gutmann, 2000).. For instance, mobility status will influence size and portability of an AAC display. An assessment of upper extremity function by an occupational therapist determines the optimal way to access AAC (e.g. size of the display, cell size).
Because of the progressive nature of ALS, there are unique issues to be considered when assessing and making AAC recommendations. The symptoms may occur gradually over a longer period of time, or rapidly in just a few months. The progressive nature of the disease is one of several factors that influence acceptance and use of AAC (Lasker & Bedrosian, 2000; 2001). Expectations and attitudes of the communication partners; skills, needs and personality of the individual user and features of the technology itself (e.g. ease of use) also affect AAC acceptance and use. How an individual copes with the introduction of AAC and assistive technology in general is closely related to their acceptance of technology prior to the onset of the disease. Those who are technology savvy recognize the benefits and tend to be more accepting of the technology, but also have higher expectations. Those with little prior technology interest or experience may be less open and prefer low tech interventions. The comfort level of the family or support network also plays a large role in exploration, acceptance and use of technology (Lasker & Bedrosian, 2000; 2001). Early education helps individuals become familiar with AAC strategies and equipment before it must play a significant role in meeting their daily communication needs (Carroll-Thomas, 1995; Blackstone, 1998).
AAC recommendations must be flexible; taking into account current needs as well as accommodating future needs as physical function declines (Beukelman, Yorkston & Dowden, 1985). Someone who is able to directly select small keys on a keyboard may not always be able to use this access method. The AAC team seeks to make access to the device as easy and efficient as possible. As physical status declines, alterations must be made in the access method. Individuals using the device may see these adaptations as confirmation that the disease process is getting worse and may be resistant to changes, without recognition that it will improve their functional communication (Lasker & Bedrosian, 2000; 2001).
A small percentage of individuals with ALS present with cognitive changes. During assessment, these changes are identified, and recommended systems are designed to account for the cognitive changes as well as maximize independent communication.
A few researchers have investigated the use of AAC by individuals with ALS. Gutmann found distinct gender preferences for different AAC methods (Gutmann, 1999; Mathy, Yorkston & Gutmann, 2000). Women preferred voice output devices twice as often as men (49 percent of women; 26 percent of men) and opted for low tech methods more than men (20 percent of women, 6 percent men). Men preferred high tech writing systems three times as often as women and preferred integrated communication systems twice as often. Women and men were comparable in terms of rejection of AAC intervention.
In addition to differences in gender preferences, trends in AAC type, specifically, dedicated or integrated, based on initial presentation of bulbar or spinal symptoms has been reported (Mathy, 1996; Doyle and Phillips, 2001). Individuals with spinal presentation tend to use integrated systems and those with bulbar often rely on dedicated devices. The majority of bulbar patients use no or low tech approaches in combination with a dedicated device.
The literature also indicates trends in the types of AAC according to communication activity. Individuals with ALS tend to use no or low tech approaches to converse face to face and rely on high tech devices for the telephone and other activities requiring greater verbal output (e.g. detailed needs prepared in advance) (Mathy, 1996; Beukelman & Lasker, 1998; Mathy, Yorkston & Gutmann, 2000).
In addition to communication activities, trends in type of method used depending upon the partner and the environment has been noted. Individuals tend to rely on unaided or low tech approaches with familiar partners and use their high tech devices with unfamiliar partners (Beukelman & Lasker, 1998; Mathy, Yorkston & Gutmann, 2000). No or low tech solutions are utilized across environments or positions (e.g. wheelchair, bed) where as high tech devices are used primarily in one environment (e.g. home) (Mathy, Yorkston & Gutmann 2000).
Clinicians have found it helpful to look at early, middle and late stages of AAC intervention. According to Kazandjian (1998), during the early stage, the focus is on maintaining natural communication. In the middle stage, individuals begin to lose motor function and start to use AAC in specific situations. In the late stage, Kazandjian states that motor control is severely limited and higher technologies such as switch scanning and eye gaze types of access are utilized. In the late stage, the severity of speech and physical access may warrant the need for high tech devices. However the authors' clinical experience suggests a greater reliance on no or low tech approaches in this late stage. The use of no or low tech approaches is due in part to changes in functional status (e.g. mobility, motor function), which often results in reductions in communication environments and partners, and subsequently, a decrease in communication needs. Access technologies require precision and can be difficult to set up. During the late stage, physical access becomes more effortful and slower. In this stage, patients depend on others for self-care and given the amount of care required, the majority of time is spent on this activity. As a result the content of communication often centers on wants and needs.
Four case studies will be presented - two individuals with Spinal ALS and two with Bulbar ALS. The case studies illustrate how AAC approaches change as individuals progress through early, middle and late stages of the disease.
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