Supporting communication for patients with ... · Supporting communication for patients with...

NeuroRehabilitation 37 (2015) 69–87DOI:10.3233/NRE-151241IOS Press

69

Review Article

Supporting communication for patientswith neurodegenerative disease

Melanie Fried-Oken∗, Aimee Mooney and Betts PetersInstitute on Development & Disability, Oregon Health & Science University, Portland, OR, USA

Abstract.BACKGROUND: Communication supports, referred to as augmentative and alternative communication (AAC), are an integralpart of medical speech-language pathology practice, yet many providers remain unfamiliar with assessment and interventionprinciples. For patients with complex communication impairments secondary to neurodegenerative disease, AAC services differdepending on whether their condition primarily affects speech and motor skills (ALS), language (primary progressive aphasia) orcognition (Alzheimer’s disease). This review discusses symptom management for these three conditions, identifying behavioralstrategies, low- and high-tech solutions for implementation during the natural course of disease. These AAC principles apply toall neurodegenerative diseases in which common symptoms appear.OBJECTIVES: To present AAC interventions for patients with neurodegenerative diseases affecting speech, motor, language andcognitive domains. Three themes emerge: (1) timing of intervention: early referral, regular re-evaluations and continual treatmentare essential; (2) communication partners must be included from the onset to establish AAC acceptance and use; and (3) strategieswill 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 patientsremain active participants in daily activities.

Keywords: Augmentative and alternative communication, communication disorders, dementia, progressive aphasia, ALS

1. Introduction

One of the most difficult challenges for individ-uals with neurodegenerative disease is the insidiousonset of communication impairments (Houston, 2000).While initial symptoms may not interfere with speechintelligibility or language functions, at some pointin disease progression, many people become unableto rely on natural speech or writing to meet theirdaily communication needs (Beukelman, Garrett, &Yorkston, 2007). Speech-language pathologists (SLPs)and assistive technology providers have developedcommunication supports that compensate for these

∗Address for correspondence: MelanieFried-Oken,Ph.D.,OregonHealth & Science University, CDRC, P. O. Box 574, Portland, OR97239, USA. Tel. : +1 503 494 7587; Fax: +1 503 494 6868; E-mail:[email protected].

deficits and ensure that patients retain the abilityto communicate throughout their lives (Beukelman,Fager, Ball, & Dietz, 2007). In this article, a rangeof communication supports, referred to as augmenta-tive and alternative communication (AAC) strategies,techniques, and devices, are described (Beukelman &Mirenda, 2013). The American Speech-Language-Hearing Association defines AAC as all forms ofcommunication that are used to express thoughts, needs,wants and ideas (American Speech-Language-HearingAssociation, n.d.). Data are presented demonstrat-ing that AAC provides communication options forindividuals with a wide range of neurodegenerativediseases that affect motor speech, language, and/or cog-nitive function. This review focuses on amyotrophiclateral sclerosis (ALS), primary progressive aphasia(PPA), and Alzheimer’s disease (AD), but these AAC

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70 M. Fried-Oken et al. / Supporting communication

evaluation and treatment principles apply to commonsymptoms associated with many other neurodegen-erative diseases, including Parkinson’s disease andParkinson’s Plus syndromes, dystonia, Huntington’sdisease, muscular dystrophy, multiple sclerosis, fron-totemporal dementia, and other types of dementia.

2. Communication support

Communication support is defined broadly as “any-thing that improves access to or participation incommunication, events, or activities. Support includesstrategies, materials, or resources that are used by peo-ple with impairments or by others who communicatewith people with impairments. It involves modificationsin the environment around the person with impair-ments or modifications to activities in which peopleengage. It also includes supportive attitudes that fostercommunication participation. Finally, support includespolicies and practices of agencies and institutionsthat foster communication success” (page 9) (King,Simmons-Mackie, & Beukelman, 2013). According toSimmons-Mackie (2013), there are key assumptionsthat justify intervention with communication supports.While these foundational concepts are described withina chronic aphasia context, they resonate for patientswith neurodegenerative disease as well: (1) The ulti-mate goal of all treatment is to enhance participationin communicative life. Regardless of the stage of theneurodegenerative process, the patient and his com-munication partners can set goals that achieve mean-ingful outcomes. (2) Communication is a collaborative

enterprise. Since meaning is negotiated between andamong participants, those with communication chal-lenges and their partners must develop strategies andresources to send and receive messages successfully.(3) Communication support is an ethical issue. It isthe responsibility of the interventionist to identify andestablish any method, strategy or resource that mighthelp a patient communicate more successfully.

The National Joint Committee for the Communica-tion Needs of Persons with Severe Disabilities presentsa Communication Bill of Rights (Table 1) that clearlystates that all people with disabilities, including thosewith severe speech and language impairment secondaryto neurodegenerative disease, have a basic right toaffect, through communication, the conditions of theirexistence (National Joint Committee for the Communi-cation Needs of Persons with Severe Disabilities,1992).

The World Health Organization’s International Clas-sification of Functioning, Disability and Health (ICF)(World Health Organization, 2001) provides a usefulframework for AAC intervention, which is deliveredat the participation level rather than the impairmentlevel of disability (Worrall & Frattali, 2000). The ICFdefines participation as “involvement in a life situation”(page 123), and places activities and participation, envi-ronmental barriers and facilitators, personal factors, aswell as body function and structure within a model ofhealth conditions. Borrowing from an aphasia frame-work again (Kagan et al., 2008), the A-FROM (Aphasia:Framework for Outcome Measurement) presents aheuristic that has been adapted from the ICF to increaserelevance to communication disorders in a clinicallyfriendly format.

Table 1NJC communication bill of rights

Each person has the right to:

• request desired objects, actions, events and people• refuse undesired objects, actions, or events• express personal preferences and feelings• be offered choices and alternatives• reject offered choices• request and receive another person’s attention and interaction• ask for and receive information about changes in routine and environment• receive intervention to improve communication skills• receive a response to any communication, whether or not the responder can fulfill the request• have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times• have AAC and other AT devices that function properly at all times• be in environments that promote one’s communication as a full partner with other people, including peers• be spoken to with respect and courtesy• be spoken to directly and not be spoken for or talked about in the third person while present• have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting thecommunication needs of persons with severe disabilities. ASHA, 34(Suppl. 7), 2–3.

M. Fried-Oken et al. / Supporting communication 71

Within the participation framework, the focus ofcommunication intervention shifts from an impairment-or restoration-based approach to one that emphasizescompensation for lost function, with reliance on AAC(Fried-Oken, Rowland, & Gibbons, 2010). For exam-ple, instead of improving speech intelligibility throughdrill and practice exercises, AAC would compensatefor a speech impairment with tools, environmental andpartner adaptations, and behavioral changes. Ratherthan working on goals to return patients to their previ-ous levels of functioning, AAC provides ways to remainengaged in daily activities with alternative compen-satory approaches or durable medical equipment. Anon-screen keyboard and joystick, for instance, might beprovided for a person with limited upper extremity skillsfor typing, permitting computer use with alternativewriting access methods. AAC encompasses a variety ofstrategies, techniques, and devices, ranging from sim-ple yes/no eye blinks to sophisticated computer-basedsystems and speech-generating devices. For patientswith neurodegenerative disease who present at differentstages of communication impairment, these supportsinitially will facilitate and maintain participation indaily activities. A mechanism must be in place to re-evaluate and adjust communication supports over timeas needs and skills change. Acceptance of multiple com-munication options by the patient and his/her family,as well as the early inclusion of communication part-ners in all aspects of treatment, are critical elementsthat are likely to ensure AAC acceptance and successfuloutcomes.

2.1. No-tech AAC

No-tech or unaided AAC refers to any natural formof communication that uses the human body, withno other equipment required (Vanderheiden & Yoder,1986). Examples include vocalizations, tongue clicks,eye movements and blinks, and gestures. One techniqueoften used by patients with intact upper extremity func-tion is writing letters in the air (Fried-Oken, Howard,& Stewart, 1991). Another approach called partner-assisted scanning involves a communication partnerreciting aloud the letters of the alphabet or a list of mes-sages, waiting for a signal (e.g. eye blink, eye movementor vocalization) to indicate the desired option (Bauby,1998). While formal sign languages such as Ameri-can Sign Language may also be considered no-techAAC, they are not often used with people with degen-erative conditions due to the time and effort requiredfor both the individual and communication partners to

learn a new language. To aid caregivers in the consis-tent interpretation of communicative movements, facialexpressions, and sounds, a gesture dictionary may beconstructed that describes an individual’s gestures andpairs them with their associated meanings (i.e. throatclearing means ‘I need ice chips’).

2.2. Low-tech AAC

Low-tech AAC involves the use of non-computerbased equipment, from pen and paper to alphabetboards (Wu & Voda, 1985), communication books andsimple alerting systems. Individuals experiencing chal-lenges with speech intelligibility can write messagesor draw pictures to communicate intent (Lasker, Hux,Garrett, Moncrief, & Eischeid, 1997). Similarly, com-munication partners can support language expressionby using a written choice strategy. During conversa-tion, if a person is unable to respond verbally, thepartner writes down possible responses. The personwith the communication impairment then can indicatehis choice by pointing to the selected word (Laskeret al., 1997). Alternatively, communication partnerscan enhance comprehension by supplementing spokenlanguage with gestures, written words or phrases, draw-ings, or diagrams. This technique, termed augmentedinput, occurs dynamically during conversation, pro-viding an effective low-tech communication support(Ball & Lasker, 2013; Wallace, Dietz, Hux, & Weissling,2012). Communication books and boards may bedeveloped that are text-based (with letters, words, orwhole sentences), symbol-based (with photos or draw-ingsrepresentingtopicsandmessages),oracombinationof the two, and should be customized to each individ-ual’s personal needs and interests (Khayum, Wieneke,Rogalski, Robinson, & O’Hara, 2012). Communica-tion boards and books are commonly used with directselection, where the patient indicates the desired itemswith an anatomical pointer or device (e.g. hand, fin-ger, head or chin stick, stylus, or laser pointer). Somecommunication boards are designed for use with eyemovements (e.g. ETRAN) (Goosens’ & Crain, 1987),or as visual supports for the partner-assisted scan-ning method described above. Appropriate size, format,selection method, text, and symbols must be consideredto personalize the low-tech options based on assessmentresults.

When natural speech is still a viable option, writingand alphabet boards can augment intelligibility. Tradi-tionally referred to as supplementation strategies, thisdefinition is currently expanding beyond alphabet, topic


and gestural supplementation to include augmentingspeech with pictures via mobile technology and conver-sation management strategies (Hanson, Beukelman, &Yorkston, 2013). Individuals with severe dysarthriabenefit from pointing to written topic cues or letterson an alphabet board to clarify speech productions(Hustad, Jones, & Dailey, 2003). A technique calledalphabet supplementation or first-letter pointing usesan alphabet board to improve speech intelligibility andhas been found to increase intelligibility by 5 to 69%,with greater improvements for those with more severedysarthria (Hanson, Yorkston, & Beukelman, 2004;Hanson, Beukelman, Heidemann, & Shutts-Johnson,2010). The speaker points to the first letter of each wordon the alphabet board as he says it, which slows downspeech, creates pauses between words, and providesadditional cues to the listener.

2.3. High-tech AAC: Speech-generating devices

A speech-generating device (SGD) is an electronicAAC system that allows the user to type or select a mes-sage that is spoken aloud. When considering an SGDfor a patient with motor speech, language or cognitiveimpairments, at least four features must be examined:(1) the technology that will house the SGD; (2) thesymbols to represent language on the machine (eitherletters for spelling, photos or pictures, or a combinationof symbols); (3) the access method or means to selectlanguage on the device; and (4) the output method ortype of speech that will be generated (Fishman, 1987).

SGDs are either ‘dedicated’ and function solely forAAC, or they are ‘integrated’, with access to AACand to other computer applications and functions. MostSGDs presently are built on general technology plat-forms, either on a laptop or on a touchscreen tabletthat is placed into a custom-built box. Communica-tion apps are very popular and exist to turn a standardtablet computer or smartphone into an SGD. A list ofapps for AAC can be found at www.janefarrall.com.The size, portability, durability, capacity, and flexibil-ity of the SGD must be considered as individuals withneurodegenerative diagnoses change their physical andcommunication needs over the natural course of thedisease.

Speech output may be either digitized (recordings ofnatural speech) or synthesized (a computer-generatedvoice that uses text-to-speech software to convert atyped message into speech) (Fishman, 1987). Digitizedmessages can be recorded by the user while intelli-gibility is still adequate, or by another speaker with

a similar-sounding voice or the same gender. Mes-sages that are produced with digitized speech must bedetermined in advance. Synthesized speech offers theadvantage of allowing the user to produce novel mes-sages, although current synthesized voices lack naturalinflection, intonation, and the ability to express emo-tion. Individuals who know in advance that they maylose their speech can record phrases in their own voicesfor eventual use on an SGD. This process is known asmessage banking (Costello & Dimery, 2014; Costello,2014; Santiago & Costello, 2013). A similar processcalled voice banking is used to create customized syn-thetic speech based on the user’s own voice. Onereliable voice banking system, named Model Talker,has been implemented in a number of current softwareprograms for text-to-speech applications (Bunnell,Lilley, Pennington, Moyers, & Polikoff, 2010; Yarring-ton, Pennington, Gray, & Bunnell, 2005; Yarringtonet al., 2008).

The term ‘access method’ refers to the way theuser produces messages on an SGD. SGDs can beadapted for access by individuals with a variety ofphysical abilities, including those who are unable totype on a keyboard or touch screen. Movements ofthe hands, feet, head, or even the eyes can be used tocontrol a computer cursor (Fager, Beukelman, Fried-Oken, Jakobs, & Baker, 2012), and switches can harnesseven the smallest muscle movements to make selec-tions as the computer scans through available options(Fishman, 1987). Brain-computer interface systemswill one day allow individuals with little or no volun-tary muscle activity, such as those with total locked-insyndrome, to control an SGD using only their brainactivity (Fager et al., 2012). Dedicated SGDs pro-duced by AAC manufacturers, along with accessoriesfor access and mounting, are covered by Medicare,Medicaid, and most private insurance providers. Anevaluation by an SLP and a physician’s prescription arerequired.

2.4. Communication partners

Conversation partner inclusion is a key componentof all AAC interventions (American Speech-Language-Hearing Association, 2005). Since communication isnot a solitary activity, the behavior and attitudes ofcommunication partners influence the success of AACuse (Scherer, Jutai, Fuhrer, Demers, & Deruyter, 2007;Smith & Connolly, 2008). Interacting with a personwho has a language, cognitive, or speech impairmentplaces a novel set of demands on the communication


partner, especially if the partners have been lifelongconversants before symptoms developed (Chapey et al.,2001). One of the standards of care in optimizingcommunication for people who are losing naturalspeech is finding a way to improve the communica-tion effectiveness of various partners (Ball & Lasker,2013; Ball, Fager, & Fried-Oken, 2012). Effectivepartners understand turn taking and engage in bal-anced conversations, ask questions but also share intopic shifts, and co-construct messages with a rangeof communication supports (Thiessen & Beukelman,2013). One way to determine the role of each com-munication partner is to place them within a socialnetwork. The Social Networks Inventory (Blackstone& Hunt-Berg, 2003) was developed for this purposewithin the AAC field, and provides a framework fordelineating personal goals for each patient-partnerdyad.

Communication partner training is a well-established, evidence-based intervention for chronicaphasia (Lyon et al., 1997; Simmons-Mackie, Raymer,Armstrong, Holland, & Cherney, 2010), and hasbeen emphasized for AAC. Training refers to for-mal instruction as well as opportunities to practicecommunication supports in a variety of environmentswith those who need AAC (Thiessen & Beukelman,2013). Partner training must focus on enhancinginteractions by determining the optimal qualities ofpartner behaviors that support verbal engagement,permitting an individual to maintain independence andparticipate in daily activities (Kagan, Black, Duchan,Simmons-Mackie, & Square, 2001; Kent-Walsh &McNaughton, 2005; Simmons-Mackie et al., 2010).Binger and colleagues (2012) delineate effectiveroles for AAC stakeholders, and create a modelfor instruction and preparation of communicationpartners. Critical issues that must be addressedinclude managing partner attitudes towards AACtechnology, the establishment of priorities for socialengagement, and the preservation of the AAC user’sroles.

Conversation partner training must continue toevolve throughout the course of the disease, shiftingto match the patient’s changing needs and abilities.As impairments worsen, partners take on increasedresponsibility to assist with communication (Kagan,1998; Kagan et al., 2001). The timing of inter-vention and the introduction of new communicationsupports are two fundamental principles that remaincritical when integrating partners into communicationmanagement.

3. Communication supports for patients withprogressive speech and motor impairments

3.1. Symptomology

Approximately 80 to 96% of people with ALS willbecome unable to meet their communication needsthrough natural speech at some point during the dis-ease progression (Beukelman, Ball, & Pattee, 2004;Sitver & Kraat, 1982). Like other aspects of ALS, com-munication difficulties vary significantly from personto person (Hanson, Yorkston, & Britton, 2011). A per-son with ALS may present with a mixed flaccid-spasticdysarthria that is characterized by impaired articula-tion, slowed speech, reduced vocal loudness, rough orbreathy voice quality, hypernasality, fatigue or short-ness of breath with speech, reduced utterance lengthdue to impaired breath support, or a combination ofany of the above (Ball, Beukelman, & Bardach, 2007;Darley, Aronson, & Brown, 1969; Kuhnlein et al.,2008). While these symptoms are always progressive,the rate of change varies. ALS is often associatedwith cognitive changes, ranging from mild impairmentto frontotemporal dementia (Goldstein & Abrahams,2013; Lomen-Hoerth et al., 2003; Neary, Snowden, &Mann, 2000), or with language impairments includingsemantic dementia or PPA (Ball et al., 2007; Tayloret al., 2013).

Individuals with advanced ALS who elect to undergotracheotomy and receive mechanical ventilation mayprogress to a locked-in state (Hayashi, Kato, & Kawada,1991; Hayashi & Oppenheimer, 2003). Individuals withclassic locked-in syndrome (LIS) have lost all volun-tary muscle function aside from blinking and limitedeye movement (Bauer, Gerstenbrand, & Rumpl, 1979;Murguialday et al., 2011). In total LIS, even eye and eye-lid movements are lost (Bauer et al., 1979; Murguialdayet al., 2011), along with any possibility for com-munication through movement-based signals. Noveltechniques are being developed to address the commu-nication needs of individuals with classic and total LIS,as medical interventions evolve for this clinical group(Beaudoin & De Serres, 2008; Casanova, Lazzari, Lotta,& Mazzucchi, 2003; Doble, Haig, Anderson, & Katz,2003; Schjolberg & Sunnerhagen, 2012).

3.2. Intervention

The case study (see Fig. 1) illustrates the wide rangeof technologies and communication strategies thatone person with ALS may require over the course of


Fig. 1. Communication supports for a woman with ALS.

disease progression (see also Doyle & Phillips, 2001).Many individuals with ALS begin with strategies toaugment their natural speech in the early stages of thedisease, but increase their use of alternative methods ofcommunication, including high-tech SGDs, as speechintelligibility continues to decline. Traditional articula-

tion and voice therapy has been found to be ineffectivein improving intelligibility in people with dysarthriasecondary to ALS; in fact, strengthening exercises forthe oropharyngeal musculature result in worseningof dysarthria (Dworkin & Hartman, 1979; Watts &Vanryckeghem, 2001). Changes in access method (e.g.


switching from a touch screen to a joystick to eye gazeaccess) are common due to ongoing motor functiondeterioration (Beukelman, Fager, & Nordness, 2011).It is important for people with ALS to have multipleoptions for communication in different situations, withdifferent partners, and under different conditions (e.g.in noisy environments or when the user is fatigued)(Roman, 2014). Since the presentation and progres-sion of speech, motor, and cognitive changes varysignificantly among different people with ALS (Ringelet al., 1993), a customized system of communicationsupports should be designed for each individual.

Timely assessment and intervention is essential forsuccessful AAC implementation. Yorkston, Beukel-man, Strand, and Bell (1999) have delineated a speechstaging system for ALS that can be used to track symp-tom progression and set treatment goals. The five stagesbegin with “no detectable speech disorder”, when inter-vention will focus on education and planning for futurechange, and progress to the point of “no useful naturalspeech”, when AAC replaces natural speech. Clinicalpathways based on the five stages provide more spe-cific guidance on appropriate assessment, intervention,and education for each stage (RERC on Communica-tion Enhancement, 2004a; RERC on CommunicationEnhancement, 2004b). Speaking rate should be moni-tored in the early stages, since it is a reliable predictorof an imminent decline in speech intelligibility. Whenspeaking rate drops below 125 words per minute orintelligibility falls below 90%, an AAC referral is rec-ommended (Ball, Willis, Beukelman, & Pattee, 2001).Throughout the process of speech deterioration, AACtreatment must be tailored to the individual’s currentneeds and abilities while simultaneously preparing forfuture challenges.

Because ALS affects motor function and often cog-nitive function as well as speech, patients shouldbe regularly screened for changes that might affectcommunication. Deterioration of physical abilities orcognitive status may render communication supportsunusable (Beukelman et al., 2011; Roman & WoolleyLevine, 2006). In these cases, the patient should bere-evaluated to determine a new access method, newAAC strategies, or modifications to existing strategies.Changes in multiple areas of functioning can be par-ticularly challenging; for example, a man with ALSmay require eye tracking to access his SGD due todeclining motor function, but may have difficulty learn-ing this new skill because of cognitive impairment(Roman & Woolley Levine, 2006). Some individualswith cognitive impairment may reject AAC intervention

(Ball, Beukelman, & Pattee, 2004). Early identificationof cognitive changes and early instruction in multipleforms of AAC, including simple, low-tech strategies,can help avoid such difficulties. Screening tools such asthe ALS Cognitive Behavioral Screen (Woolley et al.,2010) can monitor cognitive functioning, preparing thepatient and partners for changes in AAC techniquesand access. Individuals with co-occurring cognitiveimpairments or dementia offer challenges to the inter-ventionist. Often the balance of interactions shifts forthese patients, so that their communication partners pro-vide additional language supports in a compassionatemanner.

Individuals who opt for mechanical ventilation andprogress to a locked-in state also challenge current AACpractices. Brain-computer interface (BCI) technology isa new communication access method for people withsevere speech and physical impairments (Fager et al.,2012; Soderholm, Meinander, & Alaranta, 2001), andmay eventually allow AAC use by people with totalLIS. BCI systems provide a means of controlling acomputer using only brain waves, with no neuromuscu-lar activity required (Wolpaw, Birbaumer, McFarland,Pfurtscheller, & Vaughan, 2002). In a BCI, brain signalsare acquired either invasively (via implanted electrodes)or noninvasively (via electroencephalography [EEG] orother methods), and changes in brain activity are usedas control signals to make a selection or control a direc-tional cursor on a computer screen. Several BCI systemsare in development for use in communication by peo-ple with LIS (Blankertz et al., 2006; Fabiani, Gratton,Karis, & Donchin, 1987; Farwell & Donchin, 1988;Krusienski, Sellers, McFarland, Vaughan, & Wolpaw,2008; Ryan et al., 2011; Schalk, McFarland, Hinter-berger,Birbaumer,&Wolpaw,2004;Treder,Schmidt,&Blankertz, 2011). Researchers at the Wadsworth Centerhave placed their BCI 24/7 system in the homes of userswith disabilities for trials of independent use (Sellers,Vaughan, & Wolpaw, 2010; Winden et al., 2012). TheRSVP Keyboard™ BCI features a simplified interfacedesigned to be well-suited for individuals with visualand/or cognitive impairments, and is also being trialedin the homes of potential users (Oken et al., 2014; Orhanet al., 2012). Unfortunately, current BCI-based commu-nication systems are still unreliable, cumbersome, anddo not work for some potential users (Akcakaya et al.,2014).Thistechnologyneedsimprovementandisnotyetwidely available for independent home use, but showspromise as a future AAC access method for individu-als with the most severe physical disabilities, includingthose with advanced ALS.


Regardless of the methods and strategies used, AACis widely used and valued by people with ALS andtheir communication partners. In one study, individ-uals with ALS report use of high-tech AAC for anaverage of 28.4 months, including use through thelast month of life (Ball et al., 2007). Ninety-fourpercent of participants in the same study relied onlow-tech or no-tech strategies, as well, with increasedreliance on no-tech strategies toward the end of life.A number of interaction goals have been met bythese communication supports, including meeting basicneeds, providing and requesting information, and par-ticipating in social interchanges (Fried-Oken et al.,2006); remaining employed (McNaughton, Light, &Groszyk, 2001); and connecting with others throughemail, telephone communication, social media, andother electronic means (Fried-Oken et al., 2006; Shane,Blackstone, Vanderheiden, Williams, & DeRuyter,2012).

4. Communication supports for patients withprogressive language impairment

4.1. Symptomology

Primary progressive aphasia (PPA) is first identi-fied by the insidious onset of a gradual loss of wordfinding, object naming, or word-comprehension skills.Language deficits are the primary presenting symp-toms, with cognitive function relatively spared in firsttwo years. The syndrome was first described in 1982by Mesulam, who later developed a set of diagnosticcriteria (Mesulam, 1982; Mesulam & Weintraub, 1992;Mesulam, 2001). Further refinement in classificationresulted in description of three variants characterizedby distinguishable clinical presentations: progressivenonfluent aphasia (PNFA), semantic dementia (SD)and logopenic/phonological progressive aphasia (LPA)(Gorno-Tempini et al., 2011). The publication of con-sensus criteria for PPA is supported by many effortsto further delineate distinct linguistic, semantic andphonological characteristics for each variant (Carthery-Goulart, Knibb, Patterson, & Hodges, 2012; Hoffman,Meteyard, & Patterson, 2014; Leyton & Hodges, 2014;Ogar, Dronkers, Brambati, Miller, & Gorno-Tempini,2007; Thompson & Mack, 2014). Neuropathology hasbeen identified as either fronto-temporal lobar degener-ation or Alzheimer pathology with discrete patterns ofregional cortical atrophy found to be lateralized in theleft hemisphere (Mesulam et al., 2009; Mesulam, 2013).

No medical treatments are available to halt or slow thedegenerative process, and there is limited pharmaco-logical intervention for cognitive-behavioral symptommanagement. Ultimately, patients and families are leftwith an ambiguous forecast regarding communicationchanges and ways to cope as the disease progresses,wreaking havoc on ability to converse, connect inter-personally, and fully participate in daily life.

4.2. Intervention

Treatment for adults with PPA has been reportedfor the past 15 years (Beeson et al., 2011; Cress &King, 1999; Henry, Beeson, & Rapcsak, 2008; Rising,2014; Rogers, King, & Alarcon, 2000; Rogers &Alarcon, 1998). Croot et al. (2009) provide a thor-ough review of therapies aimed at a variety of languageimpairments in PPA. Historically there have been twoforms of intervention reported for patients with progres-sive language loss: impairment-directed interventionand activity/participation-based treatment. Carthery-Goulart et al. (2013) recently conducted a review ofnonpharmacological interventions for PPA, and rec-ommended impairment-directed therapies aimed atnaming and lexical retrieval in semantic PPA as treat-ment options. Fueling further optimism, Jokel, Graham,Rochon, and Leonard (2014) discuss an encourag-ing trend for evidence in the behavioral treatmentsof anomia for people with PPA, with improvementsnoted in immediate treatment effects and in mainte-nance effect.

Participation-level interventions focus on develop-ment and utilization of compensatory strategies for theestablished goal of maximizing communication ratherthan trying to recover lost language (Khayum et al.,2012; Pattee, Von Berg, & Ghezzi, 2006). Similar tothe proposed communication supports in this review,the focus of intervention shifts to compensatory strate-gies, such as communication boards and books orlow-tech AAC devices in anticipation of further decline(Kortte & Rogalski, 2013).

Regardless of intervention type, treatment is basedon two foundational principles: (1) treatment must beprovided over the course of disease progression (Crootet al., 2009; Fried-Oken, Beukelman, & Hux, 2012;Jokel et al., 2014; Rogers et al., 2000) and (2) commu-nication partners are key components of interventionat every stage (Beukelman et al., 2007; Pattee et al.,2006; Rogers & Alarcon, 1998). Staging communica-tion supports for individuals with PPA is critical in orderto maintain communication participation through the


Fig. 2. Communication supports for a man with primary progressive aphasia.

progressive disease (King, Alarcon, & Rogers, 2007).Fried-Oken (2008) proposes a framework to guide inter-vention and training for both people with PPA andtheir communication partners, based on the stages of

disease progression (presented in Fig. 2, above). Inthe early stage, intervention is based on the need toconvey specific information in specific situations. Inthis stage, strategies for pacing and word retrieval,


and identification of topic and key words are recom-mended. As generative language declines, it becomesnecessary to put patients’ internal lexica in front ofthem. Mid-stage treatment recommendations includereliance on printed materials, idiosyncratic gestures,communication boards or cards, SGDs (often tabletcomputers with apps), and partner/family training toprovide multi-modal input to support comprehensionfor the person with PPA. Late stage treatment includesprompting, errorless training for pointing to referentsand teaching the partners to provide basic choices forexpression. Treatment focuses both on meeting an indi-vidual’s current communication needs and on preparingfor future changes, with an emphasis on compensatingfor language deficits rather than trying to reverse them(Fried-Oken et al., 2012). The roles that communicationpartners play in the lives of people with PPA are essen-tial. As an individual loses skills, the partner assumesmore responsibility for communicative interaction andmessage co-construction (Fried-Oken, 2008).

5. Communication supports for patients withprogressive cognitive impairment

5.1. Symptomology

Progressive loss of cognitive skills is a frequentsymptom of many neurodegenerative diseases, andthe common characteristic of dementia syndromes(Rowland, 2005). Communication supports are a criti-cal intervention strategy for patients and their partnersat different stages of cognitive loss, and often are usedto facilitate conversation, maintain independence aslong as possible, and assist with caregiving and behav-ior management (Bourgeois & Hickey, 2007). In thecases of dementia in Parkinson’s disease, Parkinson’sPlus syndromes (such as progressive supranuclear palsyand corticobasal degeneration), Huntington’s disease,AIDS encephalopathy, multiple sclerosis, or ALS, sig-nificant motor impairments and sensory loss must beconsidered during treatment planning. For patients whopresent with cortical dementias, including Alzheimer’sdisease (AD), Pick’s disease, frontotemporal dementia(FTD), and dementia with Lewy bodies, impair-ments in attention and communication are common(Bourgeois & Hickey, 2009). This review will focusprimarily on Alzheimer’s disease and probable AD(McKhann et al., 1984).

The communication and cognitive deficits associatedwith AD can be divided according to early, mid, and late

stages (Bayles, Kaszniak, & Tomoeda, 1987; Bayles,Tomoeda, Cruz, & Mahendra, 2000; Bourgeois &Hickey, 2009; Kempler, 1995; Kertesz, 1994). In theearly stage, many communication skills remain intact,including speech sound production, grammar, and con-versational abilities. Oral reading, writing, and readingcomprehension are preserved. There is good sustainedattention and concentration, and the patient is awareof language and memory lapses. Deficits are notedin word finding, comprehending complex conversationand abstract language, and explicit memory retrieval.By the middle stage, increasing deficits are noted inword finding, understanding of complex instructionsand tasks, reading comprehension, and many domainsof memory. Relative strengths include speech soundproduction, grammar, oral reading, and implicit or pro-cedural memory. The late stage of AD is characterizedby severely limited expressive language, inappropriateword choices, limited vocal productions (sometimesto the point of mutism), severely limited auditorycomprehension, and severe memory deficits across alldomains. Affective responses to sensory stimuli andmusic remain strong, and the patient often cooperateswith appropriate tactile, visual, and affective cues. Iftreatment is expected to increase appropriate commu-nication behaviors during the natural course of thisdisease, then it must occur early, include communica-tion partners as early as possible, and rely on multiplemodalities to capitalize on the patient’s strengths.

5.2. Intervention

Communication treatment for people with AD hasthree main purposes: (1) to maintain independent func-tioning as long as possible; (2) to maintain quality oflife through supported participation and engagementin selected activities; and (3) to maintain activitiesthat are personally relevant and within functional con-texts (Bourgeois & Hickey, 2009). The focus of mostinterventions must be compensatory, that is, the useof stimuli or strategies that compensate for cognitiveimpairments so that the individual can function in anadaptive manner during meaningful, satisfying activi-ties (Fried-Oken, Rau, & Oken, 2000) (see Fig. 3).

Within the past two decades, communication treat-ment has evolved to address participation-based goals,rather than trying to improve cognitive-communicationimpairments that progressively worsen. As such, inter-vention should either rely on (1) over-learned processes(procedural memory) or preserved abilities for effort-less acquisition of new information, or (2) errorless


Fig. 3. Communication supports for a man with Alzheimer’s disease.


learning technique (Baddeley, 1992; Wilson, Baddeley,Evans, & Shiel, 1994) where structured, success-ful, frequent repetitive practice of new informationenters memory. The former technique uses memoryaids as communication supports (Bourgeois, Fried-Oken, & Rowland, 2010), and the latter techniqueuses spaced retrieval methods (Brush & Camp, 1998;McKitrick, Camp, & Black, 1992). An evidence-basedsystematic review of interventions for individuals withdementia (Hopper et al., 2013) found that the mostcommonly used cognitive-communication interven-tions techniques relied on errorless learning, spacedretrieval, or verbal instruction/cueing. A comparison oftraining strategies that used both spaced retrieval andexternal memory aids found evidence for both tech-niques (Bourgeois et al., 2003).

Bourgeois discusses internal and external mem-ory strategies (Bourgeois, 1991). An internal strategyinvolves a process whereby a person must performsome mental manipulation of information to be remem-bered using mnemonic techniques, rehearsal or visualassociation strategies. Spaced retrieval falls into thiscategory. External memory strategies include devices,equipment or visual cues for recognition of informationand automatic processing. AAC supports are consid-ered external strategies.

External memory aids include memory books, wal-lets, and cards, memo boards or planners with photos,biographical statements, and stories, as well as simpletechnology. Bourgeois (1990, 1992) clearly demon-strated that memory wallets improve the quality ofconversation, increase production of factual, unam-biguous statements, and encourage greater participationin conversation for people with AD. In the earlystages of dementia, common technology such as cellphones, voice message devices, talking photo frames,or watches can be used as memory supports. A smartphone, for instance, can function as an external mem-ory support: the phone’s directory can dial familiarnumbers when a name or photo appears on the screen,the calendar can keep track of appointments, and thephone can be programmed to signal when medica-tions need to be taken (Bourgeois et al., 2010). Evenin the advanced stages of dementia, when communi-cation deficits are severe and verbal output is limited,individuals with dementia rely on procedural memoryto look at memory books, or listen while a communi-cation partner reads and discusses the book. Memoryaids, even remote schedule prompters, can also helpto reduce problem behaviors such as repetitive verbal-izations (Kuwahara, Yasuda, Tetsutani, & Morimoto,

2010; Yasuda, Kuwabara, Kuwahara, Abe, & Tetsutani,2009). In response to repeated questions or requests, acaregiver can instruct the person with dementia to findthe answer written on an index card or a page froma communication book, thereby reducing further rep-etitions (Bourgeois, Burgio, Schulz, Beach, & Palmer,1997). Talking Mats, a low-tech AAC system involv-ing picture symbols and a visual rating scale, assistspeople with dementia in expressing their opinions andparticipating in decision-making (Murphy, Gray, vanAchterberg, Wyke, & Cox, 2010; Murphy & Oliver,2013). Fried-Oken and colleagues (2012) demonstratedthat people with moderate AD could improve verbalconversation about personal, contextually relevant top-ics with communication boards as long as individualswere trained sufficiently how to use the communica-tion supports. Simply placing a communication board infront of a person with AD without instruction producedno benefit. Voice output was found to distract peoplewith AD and reduce their performance in conversation.

As with patients with PPA, conversation partnersassume an ever increasing share of the responsibilityfor communication as the disease progresses. Small,Gutman, Makela, and Hillhouse (2003) examined thecommunication strategies used by caregivers with indi-viduals with AD, and found that the following strategiessignificantly reduced communication breakdowns: ask-ing one question or giving one instruction at a time;using short, simple sentences; and eliminating envi-ronmental distractions. Dijkstra, Bourgeois, Allen, andBurgio (2004) demonstrated that a communicationpartner may lower the demands of working mem-ory during conversation by repeating questions posedto the patient, paraphrasing information, opening acommunication book with personal information, or pre-senting verbal cues when the patient fails to engagein conversation. While these facilitators violate con-versational rules when healthy partners are talking,they clearly support continuation of verbal interactionbetween patients with AD and conversational partners.Communication skills training programs for familymembers and caregivers are effective in improvingcommunication with and attitudes towards people withdementia, reducing aggressive behaviors and agitation,and increasing quality of life (Eggenberger, Heimerl, &Bennett, 2013). Partner training significantly improvespatient communication when strategies are embeddedinto daily care activities for care staff within residentialand nursing homes (Vasse, Vernooij-Dassen, Spijker,Rikkert, & Koopmans, 2010). Like patients with PPA,individuals with dementia may benefit from multimodal


input (e.g. writing key words, displaying remnants orobjects) during early and middle stages of the disease tosupport receptive communication (Ho, Weiss, Garrett,& Lloyd, 2005; Lasker et al., 1997).

6. Conclusion

The insidious deterioration of motor speech, lan-guage, and cognition secondary to neurodegenerativedisease significantly impacts patients, their communi-cation partners, and medical management. Treatmentmust be aimed at helping persons with progressivecommunication impairments maintain independence aslong as possible and retain basic societal roles for fam-ily, community, employment, and recreational pursuitsfor meaningful quality of life (Fox & Sohlberg, 2000).

Common treatment themes emerge, regardless ofwhether motor speech, language, or cognitive skillsare affected. First, AAC timing based on the natu-ral course of the disease is critical. Treatment muststart early to ensure adequate time for AAC educa-tion, device acquisition, and training. Early referral toa speech-language pathologist is recommended. Con-sistent communication re-evaluations are necessary andmust become standardized in management plans to doc-ument changes and adjust treatment, equipment, andgoals with the patient and his/her significant others.Second, intervention must include communication part-ners from the start. Patients and their family memberswill only accept AAC supports as viable communica-tion options if they learn to integrate them togetherinto daily conversation. Partners, whether paid care-givers or family members, are the greatest advocatesand are an essential component of successful com-munication supports. Finally, communication strategiesmust rely on multiple modalities to capitalize on thepatient’s strengths. Communication supports, includ-ing high-tech, low-tech, and no-tech approaches, shouldbe tailored to the specific needs and abilities of eachperson, and should be modified throughout diseaseprogression. A number of issues surface often whencommunication supports are proposed, and are dis-cussed as important topics for future consideration.

6.1. Service provision

In order to provide the most appropriate commu-nication services to patients with neurodegenerativedisease, a well-trained healthcare team and knowledge-able ‘finders’ are imperative (Beukelman et al., 2011;

Zangari & Wasson, 1997). Finders include primarycare physicians, neurologists, and therapists, who areoften the first medical providers to evaluate a personwith a degenerative disease. Once diagnosed, patientsshould be referred for speech-language pathology ser-vices. The nature of the speech-language pathologyservice varies, depending on setting, expertise, andcomposition of the clinical team. Funding for evalu-ation, treatment, and speech-generating devices mustbe in place. Currently, in the United States, SGDsare considered durable medical equipment and areavailable through private medical insurance as wellas government-sponsored programs (Assistive Tech-nology Law Center, 2012). Advocacy organizations,such as the ALS Association and the Muscular Dys-trophy Association, are available to guide patients andfamilies through the policy and practice barriers thatexist in health care systems. Chat rooms have sprungup on the Internet, such as http://www.alsforums.comand www.alzheimersonline.org, where individuals withprogressive diseases and their caregivers discusstheir experiences and raise questions about medi-cal management and family issues. Patient registriesand research nets exist where the latest medi-cal and technological treatments are discussed (e.g.www.ppaconnection.org). Tools for outcomes measure-ment that take into account patient centered outcomesand measure goals, such as maintaining indepen-dence in the home with adequate communication, mustbe available (Kagan et al., 2008; Patient ProviderCommunication, 2014).

6.2. Patient provider communication

One critical aspect of service provision is the estab-lishment of effective relationships, values, and means ofinteraction between patients and their providers. Thisis especially important for the patients who are los-ing natural speech and language abilities secondary totheir diagnoses, or those with low health care literacyskills who cannot understand everything that is happen-ing to them (Weiss, 2007; Williams, Davis, Parker, &Weiss, 2002). In 2010, the Joint Commission publisheda roadmap for hospitals, entitled Advancing EffectiveCommunication, Cultural Competence, and Patient-and Family-Centered Care, that iterates suggestionsfor providers to interact with patients who are com-munication vulnerable (The Joint Commission, 2010).Adherence to intervention and patient satisfaction,both measures that affect patient outcomes, has beenlinked to effective patient-provider communication

http://www.alsforums.com

www.ppaconnection.org


(Haskard Zolnierek & DiMatteo, 2009). In other words,the way that information is presented to the patientand the relationships and values established with thepatient will affect their overall communication manage-ment. Yorkston, Baylor, Burns, Morris, and McNalley(2015) discuss how a provider’s basic verbal interac-tion skills need to be supplemented with informationabout strategies for patients with communication disor-ders, including individuals who use AAC approaches.In order to participate in decision-making, for instance,messages in low-tech and high-tech devices mustinclude words that allow for communication about thepatient’s diagnosis, treatment options, values, and end-of-life preferences so that the he or she has the abilityto control health care decisions, to ask questions, andto respond to inquiries from providers.

The provider is a communication partner who isresponsible for elements of shared decision makingduring the natural course of the disease. Health careproviders are included in one of the partner cir-cles of the Social Network Inventory (Blackstone &Hunt-Berg, 2003) discussed earlier. Yorkston and col-leagues (2015) delineate 11 roles that providers mustconsider: establish the patient’s preference for theamount and format of presented information; estab-lish the patient’s preference for each person’s role indecision-making; gather information about the patient’sconcerns and expectations; share medical informationand evidence; recognize that a decision can and must bemade in the situation; evaluate the presented informa-tion with the patient; negotiate decisions and resolveconflict; frequently check understanding of facts andperspectives; agree on a decision and an action plan;authorize final choices; and implement the agreed uponchoice. Materials are available that guide providerstoward effective communication (CommunicationMatters, 2008). Clearly, in addition to understanding thesymptom trajectories of each disease and knowing theoptions for communication supports and intervention,it is critical that providers support effective, value-based patient-provider communication that will affectoutcomes and quality of life for patients with neurode-generative diseases that cause speech, language, andcognitive impairments.

Acknowledgments

The preparation of this manuscript was supported inpart by the Rehabilitation Engineering Research Cen-ter on Augmentative and Alternative Communication,

funded by the National Institute on Disability, Inde-pendent Living, and Rehabilitation Research in theU.S. Department of Health and Human Services(H133E140026), and grants from the National Insti-tutes of Health in the U.S. Department of Health andHuman Services (R01 DC009834 and R21 DC014099).

Conflict of interest

The authors do not have any conflict of interest todisclose.

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