AAC References
Augmentative and alternative communication (AAC) is an important clinical intervention for many people with motor neurone disease (MND).
This information is for health and social care professionals working with people with MND. The following references contain applied content addressing AAC use by people with MND.
While we have searched the main databases, this is not an exhaustive literature search and is purposefully selective. It is likely that other literature is available. If you know of a resource that would be useful for this list, please send your suggestions to Steven Bloch.
Please note, this list is not designed to cover the wider range of MND speech and swallowing management literature.
General overviews of AAC-MND/ALS
- Ball L. Adults with Acquired Physical Disabilities, in Augmentative and Alternative Communication, Beukelman D and Mirenda P, Editors. 2005, Paul H Brookes Publishing Co.: Baltimore, Maryland. 435-46.
- Ball L, Beukelman D and Bardach L ‘Amyotrophic Lateral Sclerosis’ chapter 9 in Beukelman D, Garrett KL and Yorkston KM(eds) ‘Augmentative Communication Strategies for adults with Acute or Chronic Medical Conditions’. 2007. Maryland: Paul H. Brookes Publishing.
- Beukelman D, Fager S and Nordness A. Communication Support for People with ALS. Neurology Research International. 2011; 1-6.
- Beukelman DR et al. AAC for adults with acquired neurological conditions: a review. Augmentative Alternative Communication. 2007; 23(3):230.
- Brownlee A. The role of augmentative communication devices in the medical management of ALS. Neurorehabilitation. 2007; 22(6):445-50.
- Hanson EK, Yorkston KM and Britton D. Dysarthria in Amyotrophic Lateral Sclerosis: A Systematic Review of Characteristics, Speech Treatment, and Augmentative and Alternative Communication Options. Journal of Medical Speech-Language Pathology. 2011; 19(3):12-30.
- Robarge KM. Communication management in amyotrophic lateral sclerosis: the role of the speech-language pathologist during disease progression. Internet Journal of Allied Health Sciences & Practice, 2009; 7(2) Article 4.
Access to/interface with AAC devices in MND/ALS
- Doyle M and Phillips B. Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augmentative Alternative Communication. 2001; 17(3):167-78.
- Gibbons C. Functional performance using eye control and single switch scanning by people with ALS. Perspectives on Augmentative & Alternative Communication. 2010; 19(3): 64-9.
- Harris D. The ERICA eye gaze system versus manual letter board to aid communication in ALS/MND. British Journal of Neuroscience Nursing. 2009; 5(5):227-30.
- McCane LM et al. Brain-computer interface (BCI) evaluation in people with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15(3-4):207-215.
- Nijboer F. A P300-based brain-computer interface for people with amyotrophic lateral sclerosis. Clinical Neurophysiology. 2008; 119(8):1909-1916.
- Silvoni S et al. P300-Based Brain-Computer Interface Communication: Evaluation and Follow-up in Amyotrophic Lateral Sclerosis. Frontiers in neuroscience. 2009; 3:60.
- Spataro R et al. The eye-tracking computer device for communication in amyotrophic lateral sclerosis. Acta Neurol Scand. 2014; 130(1):40-45.
User-carer views of AAC in MND/ALS
- Ball LJ, Beukelman DR and Pattee GL. Communication effectiveness of individuals with ALS. Journal of Communication Disorders. 2004; 37(3):197-215.
- Caron J and Light J. ‘My World Has Expanded Even Though I'm Stuck at Home’: Experiences of Individuals With Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication and Social Media. Am J Speech Lang Pathol. 2015; 24(4):680-695.
- Fried-Oken M. Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication. 2006; 22(3):209-21.
- Gibbons C. Functional performance using eye control and single switch scanning by people with ALS. Perspectives on Augmentative & Alternative Communication. 2010; 19(3):64-9.
- Harris D. The ERICA eye gaze system versus manual letter board to aid communication in ALS/MND. British Journal of Neuroscience Nursing. 2009; 5(5):227-30.
- Huggins JE, Wren PA, and Gruis KL, What would brain-computer interface users want? Opinions and priorities of potential users with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2011; 12(5):318-24.
- McNaughton D. 'Don't give up': Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication. 2001; 17(3):179-95.
- Murphy J. Communication strategies of people with ALS and their partners. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2004; 5(2):121-6.
- Murphy J. 'I Prefer Contact This Close": Perceptions of AAC by People with Motor Neurone Disease and their Communication Partners. Augmentative and Alternative Communication. 2004; 20(4):259-271.
- Richter M et al. Attitudes toward communication modes and message formulation techniques used for storytelling by people with amyotrophic lateral sclerosis. Augmentative and Alternative Communication. 2003; 19(3):170-186.
- Robillard A. Communication problems in the intensive care unit. Qualitative Sociology, 1994; 17(4):383-395.
- Robillard A. Meaning of a disability - the lived experience of paralysis. 1999. Philadelphia: Temple University Press.
- Toy N. Listeners' attitudes: speech supplementation strategies for improving effectiveness of speakers with mixed dysarthria as a result of motor neuron disease. South African Journal of Communication Disorders - die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, 2008: 63-76.
Clinical management of MND in MND/ALS
- Mathy P, Yorkston K and Gutmann M. ‘AAC for Individuals with Amyotrophic Lateral Sclerosis’, in Augmentative and Alternative Communication for Adults with Acquired Neurologic Disorders, Beukelman D, Yorkston K and Reiche J, Editors. 2000, Paul H. Brookes Publishing Co.: Baltimore, Maryland. 183-231.
- Yorkston K. Early intervention in amyotrophic lateral sclerosis: A case presentation. Augmentative and Alternative Communication. 1989; 5(1):67-70.
- Yorkston K, Miller R, Strand E and Britton D. Management of speech and swallowing in degenerative diseases. Third edition. 2012, Austin: TX: Pro-Ed. 267.
- Yorkston K et al. Speech Deterioration in Amyotrophic Lateral Sclerosis: Implications for the Timing of Intervention. Journal of Medical Speech -Language Pathology. 1993; 1(1):35-46.
Use/function of AAC by people with ALS/MND
- Ball LJ. Acceptance of Augmentative and Alternative Communication Technology by Persons with Amyotrophic Lateral Sclerosis. [References]. AAC: Augmentative and Alternative Communication. 2004; 20(2):113-122.
- Bloch S and Clarke MT, Handwriting-in-interaction between people with ALS/MND and their conversation partners. Augmentative and Alternative Communication. 2013; 29(1):54-67.
- Bloch S. Anticipatory other-completion of augmentative and alternative communication talk: a conversation analysis study. Disability and Rehabilitation. 2011; 33(3):261-69.
- Bloch S. ‘Co-constructing meaning in dysarthria: word and letter repetition in the construction of turns’, in Applying Conversation Analysis, K. Richards and P. Seedhouse, Editors. 2005, Palgrave Macmillan: Basingstoke. 38-55.
- Doyle M. Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augmentative Alternative Communication. 2001; 17(3):167-78.
- Luo F. Personal narrative telling by individuals with ALS who use AAC devices. Dissertation Abstracts International. 2009; 70(01):246.
- Todman J and Lewins E. Conversational Rate of a Non-Vocal Person with Motor Neurone Disease Using the 'TALK' System. International Journal of Rehabilitation Research. 1996; 19(3): 285-87.
- Zeitlin D, Abrams G and Shah BK. Use of Augmentative/Alternative Communication in Patients with Amyotrophic Lateral Sclerosis. Journal of Neurological Rehabilitation. 1995; 9:217-220.
The above references have been compiled by:
- Dr Steven Bloch, University College London, UK
- Helen Paterson, Royal Hospital for Neuro-disability, London, UK
- Professor Kathy Yorkston, University of Washington, Seattle, US
Guideline production
These guidelines have been produced and reviewed by a core group:
- Dr Steven Bloch (Chair) – Speech and Language Therapist/Senior Lecturer, University College London
- Gary Derwent – Occupational Therapist and Director, Compass Electronic Assistive Technology Service, Royal Hospital for Neuro-disability, Putney, London
- Jane Evans – MND Association Regional Care Development Adviser, Sheffield
- Julia Johnson – Clinical Specialist, Speech and Language Therapy, King’s College Hospital, London
- Helen Paterson – Advanced Specialist Speech and Language Therapist, Compass Electronic Assistive Technology Service, Royal Hospital for Neuro-disability, Putney, London
The group is extremely grateful to the wider group of clinicians and suppliers who commented on earlier drafts of these guidelines, and also to the MND Association for supporting the guideline development and dissemination.
Thank you to the following for undertaking peer review:
- Catherine Harris, Independent Speech and Language Therapist and Chair of Communication Matters
Guideline review
These guidelines were originally based on current best practice in 2012 and have been updated in April 2016. They will be reviewed every three years but if you have any information that you feel is worth adding then please contact Steven Bloch.
Please note, the guidelines are not designed to offer advice on individual products or services. For this reason we do not refer to, or list, products except as general examples. Where examples are given, these should not be treated as endorsements.
For UK product information, please refer to Communication Matters.
Find out more
If you would like more information about AAC, please contact our Communication Aids Coordinator or our MND Connect helpline.