[en] Speech-language therapists/pathologists (SLT/Ps) are key professionals in the management and treatment of primary progressive aphasia (PPA), however, there are gaps in education and training within the discipline, with implications for skills, confidence, and clinical decision-making. This survey aimed to explore the areas of need amongst SLT/Ps working with people living with PPA (PwPPA) internationally to upskill the current and future workforce working with progressive communication disorders. One hundred eighty-five SLT/Ps from 27 countries who work with PwPPA participated in an anonymous online survey about their educational and clinical experiences, clinical decision-making, and self-reported areas of need when working with this population. Best practice principles for SLT/Ps working with PwPPA were used to frame the latter two sections of this survey. Only 40.7% of respondents indicated that their university education prepared them for their current work with PwPPA. Competency areas of "Knowing people deeply," "Practical issues," "Connectedness," and "Preventing disasters" were identified as the basic areas of priority and need. Respondents identified instructional online courses (92.5%), sample tools and activities for interventions (64.8%), and concrete training on providing care for advanced stages and end of life (58.3%) as central areas of need in their current work. This is the first international survey to comprehensively explore the perspectives of SLT/Ps working with PwPPA. Based on survey outcomes, there is a pressing need to enhance current educational and ongoing training opportunities to better promote the well-being of PwPPA and their families, and to ensure appropriate preparation of the current and future SLT/P workforce.
Disciplines :
Treatment & clinical psychology Social & behavioral sciences, psychology: Multidisciplinary, general & others
Author, co-author :
Gallée, Jeanne; Center for Psychometric Analyses of Aging and Neurodegeneration, Department of Medicine, University of Washington
Cartwright, Jade; School of Health Sciences, University of Tasmania
Grasso, Stephanie; Department of Speech, Language, and Hearing Sciences, The University of Texas at Austin
Jokel, Regina; Temerty Faculty of Medicine, University of Toronto
Lavoie, Monica; Chaire de recherche sur les aphasies primaires progressives - Fondation de la famille Lemaire, Université Laval
McGowan, Ellen; Pennine Care NHS Foundation Trust
Pozzebon, Margaret; Age Right Speech Pathology
Beber, Bárbara Costa; Department of Speech, Language, and Hearing Sciences, Universidade Federal de Ciências da Saúde de Porto Alegre (UFCSPA
Duboisdindien, Guillaume ; Université de Liège - ULiège > Département de Psychologie > Neuropsychologie de l'adulte ; Chaire de recherche sur les aphasies primaires progressives - Fondation de la famille Lemaire, Université Laval ; ULille - Université de Lille [FR] > CNRS, UMR 8163, Savoirs Textes
Montagut, Núria; Alzheimer's Disease and other Cognitive Disorders Unit, Neurology Service, Hospital Clinic Barcelona
Norvik, Monica; Department of Linguistics and Scandinavian studies, University of Oslo
Sugimoto, Taiki; Center for Psychometric Analyses of Aging and Neurodegeneration, Department of Medicine, University of Washington
Townsend, Rosemary; Dyscover Ltd
Unger, Nina; Department of Neurology, University Medicine Greifswald
Winsnes, Ingvild E; Department of Linguistics and Scandinavian studies, University of Oslo
Volkmer, Anna; Department of Psychology and Language Science, University College London
ADI - Dementia statistics. https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/.
Prince, M., Bryce, R. Ferri, C. World Alzheimer Report 2011: The benefits of early diagnosis and.. Alzheimer’s Disease International (ADI) (2011). Available at: https://www.alzint.org/u/WorldAlzheimerReport2011.pdf. (Accessed: 7th February 2024)
Prince, M. et al. World Alzheimer Report 2015 - Alzint.org. World Alzheimer Report 2015 (2015). Available at: https://www.alzint.org/u/worldalzheimerreport2015summary.pdf. (Accessed: 7th February 2024)
Zimmerman, R. Dementia as a global public health ‘Tidal wave’. WBUR News (2015). Available at: https://www.wbur.org/news/2015/03/19/dementia-global-public-health-tidal-wave. (Accessed: 7th February 2024)
R. Koopmans T. Rosness Young onset dementia – What does the name imply? Int. Psychogeriatr. 2014 26 1931 1933 10.1017/S1041610214001574 25382199
S. Hendriks et al. Global prevalence of young-onset dementia JAMA Neurol. 2021 78 1080 1090 10.1001/jamaneurol.2021.2161 34279544
S. Hendriks et al. Global incidence of young-onset dementia: A systematic review and meta-analysis Alzheimer’s Dement. 2023 19 831 843 10.1002/alz.12695
E. Vuorinen M. Laine J. Rinne Common pattern of language impairment in vascular dementia and in alzheimer disease Alzheimer Dis. Assoc. Disord. 2000 14 81 86 1:STN:280:DC%2BD3cvpt1Sjsw%3D%3D 10.1097/00002093-200004000-00005 10850746
K.A. Bayles C.K. Tomoeda Cognitive-Communication Disorders of Dementia: Definition, Diagnosis, and Treatment 2015 San Diego Plural Publishing Inc
S.J. Crutch et al. Shining a light on posterior cortical atrophy Alzheimers Dement 2013 9 463 465 10.1016/j.jalz.2012.11.004 23274153
B. Klimova K. Kuca Speech and language impairments in dementia J. Appl. Biomed. 2016 14 97 103 10.1016/j.jab.2016.02.002
P.K. Crane et al. Incidence of cognitively defined late-onset Alzheimer’s dementia subgroups from a prospective cohort study Alzheimers Dement 2017 13 1307 1316 10.1016/j.jalz.2017.04.011 28623677
S. Mukherjee et al. Genetic data and cognitively defined late-onset Alzheimer’s disease subgroups Mol. Psychiatry 2020 25 2942 2951 10.1038/s41380-018-0298-8 30514930
D. Putcha et al. Word retrieval across the biomarker-confirmed Alzheimer’s disease syndromic spectrum Neuropsychologia 2020 140 10.1016/j.neuropsychologia.2020.107391 32057937 7085933
K.M. Smith D.N. Caplan Communication impairment in Parkinson’s disease: Impact of motor and cognitive symptoms on speech and language Brain Lang. 2018 185 38 46 10.1016/j.bandl.2018.08.002 30092448
K.A. Peterson K. Patterson J.B. Rowe Language impairment in progressive supranuclear palsy and corticobasal syndrome J. Neurol. 2021 268 796 809 10.1007/s00415-019-09463-1 31321513
A. Geraudie et al. Speech and language impairments in behavioral variant frontotemporal dementia: A systematic review Neurosci. Biobehav. Rev. 2021 131 1076 1095 10.1016/j.neubiorev.2021.10.015 34673112
J.R. Duffy R.L. Utianski K.A. Josephs Primary progressive apraxia of speech: From recognition to diagnosis and care Aphasiology 2021 35 560 591 10.1080/02687038.2020.1787732 34219857
M.L. Kimbarow S.E. Wallace Cognitive Communication Disorders 2023 4 San Diego Plural Publishing
M.L. Gorno-Tempini et al. Classification of primary progressive aphasia and its variants Neurology 2011 76 1006 1014 10.1212/WNL.0b013e31821103e6 21325651 3059138
C.R. Marshall et al. Primary progressive aphasia: A clinical approach J Neurol 2018 265 1474 1490 10.1007/s00415-018-8762-6 29392464 5990560
C.R.S. Belder et al. Primary progressive aphasia: Six questions in search of an answer J. Neurol. 2024 271 1028 1046 10.1007/s00415-023-12030-4 37906327
A. Volkmer A. Spector J.D. Warren S. Beeke Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK Dementia (London) 2020 19 1349 1363 10.1177/1471301218797240 30180763
C. Taylor-Rubin K. Croot L. Nickels Speech and language therapy in primary progressive aphasia: A critical review of current practice Expert. Rev. Neurother. 2021 21 419 430 1:CAS:528:DC%2BB3MXotlGru70%3D 10.1080/14737175.2021.1897253 33641570
L.D. Wauters et al. Behavioral treatment for speech and language in primary progressive aphasia and primary progressive apraxia of speech: A systematic review Neuropsychol. Rev. 2023 10.1007/s11065-023-09607-1 37792075
I. Cadório M. Lousada P. Martins D. Figueiredo Generalization and maintenance of treatment gains in primary progressive aphasia (PPA): A systematic review Int. J. Lang. Commun. Disord. 2017 52 543 560 10.1111/1460-6984.12310 28120406
J. Gallée A. Volkmer Role of the speech-language therapist/pathologist in primary progressive Aphasia Neurol. Clin. Pract. 2023 13 10.1212/CPJ.0000000000200178 37529299 10389170
J. Gallée A Roadmap to enhance care for people living with primary progressive Aphasia: What Can Be Done Now? Perspect ASHA SIGs 2023 8 847 862 2023pari.book...G 10.1044/2023_PERSP-23-00025
A. Volkmer C. Bruns V. Zimmerer R. Varley S. Beeke Giving voice to people with dementia and their carers: The impact of communication difficulties on everyday conversations Int. J. Qual. Methods 2023 22 16094069231171096 10.1177/16094069231171096
K.-C. Lo G. Bricker-Katz K. Ballard O. Piguet The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study Dementia (London) 2022 21 2476 2498 10.1177/14713012221124315 36054090
T. Ho A. Whitworth D. Hersh J. Cartwright “They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia Int. J. Speech-Lang. Pathol. 2023 25 449 461 10.1080/17549507.2023.2208311 37212610
Swaffer, K. #Hello, my name is Kate | Dementia Alliance International. Dementia Alliance International https://dementiaallianceinternational.org/about/resources/our-voice-matters/hello-my-name-is-kate (2022).
A. Volkmer et al. Speech and language therapy approaches to managing primary progressive aphasia Pract. Neurol. 2020 20 154 161 10.1136/practneurol-2018-001921 31358572
A. Volkmer A. Spector J.D. Warren S. Beeke Speech and language therapy for primary progressive aphasia across the UK: A survey of current practice Int. J. Lang. Commun. Disord. 2019 54 914 926 10.1111/1460-6984.12495 31364253
M. Loizidou et al. ‘Like going into a chocolate shop, blindfolded’: What do people with primary progressive aphasia want from speech and language therapy? Int. J. Lang. Commun. Disord. 2023 58 737 755 10.1111/1460-6984.12818 36448629
J. Ruksenaite et al. Primary progressive aphasia: Toward a pathophysiological synthesis Curr. Neurol. Neurosci. Rep. 2021 21 7 10.1007/s11910-021-01097-z 33543347 7861583
L. Furlong K. Ttofari Eecen Beyond borders: Innovative ways of thinking and working in speech-language pathology Int. J. Speech Lang. Pathol. 2023 25 343 345 10.1080/17549507.2023.2224195 37480227
A. Volkmer et al. Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus Disabil. Rehabil. 2023 45 1063 1078 1:STN:280:DC%2BB2Mvgtl2lug%3D%3D 10.1080/09638288.2022.2051080 35352609
S.A. Savage A. Suárez-González A. Cassani R. Gopalan J. Stott Non-primary progressive language impairment in neurodegenerative conditions: protocol for a scoping review Syst. Rev. 2021 10 32 10.1186/s13643-021-01589-6 33472694 7816313
A. Suárez-González A. Cassani R. Gopalan J. Stott S. Savage When it is not primary progressive aphasia: A scoping review of spoken language impairment in other neurodegenerative dementias Alzheimers Dement 2021 7 12205
A. Volkmer et al. ‘Communication is difficult’: Speech, language, and communication needs of people with young onset or rarer forms of non-language led dementia Int. J. Lang. Commun. Disord 2024 59 4 1553 1577 10.1111/1460-6984.13018 38329409
M. Fried-Oken A. Mooney B. Peters Supporting communication for patients with neurodegenerative disease NeuroRehabilitation 2015 37 69 87 10.3233/NRE-151241 26409694 6380499
H.P. Rowe S. Shellikeri Y. Yunusova K.V. Chenausky J.R. Green Quantifying articulatory impairments in neurodegenerative motor diseases: A scoping review and meta-analysis of interpretable acoustic features Int. J. Speech Lang Pathol. 2023 25 486 499 10.1080/17549507.2022.2089234 36001500
G. Eysenbach Improving the quality of Web surveys: the checklist for reporting results of internet E-surveys (CHERRIES) J. Med. Internet Res. 2004 6 10.2196/jmir.6.3.e34 15471760 1550605
The International Speech and Language Therapy / Pathology Primary Progressive Aphasia Network. https://speechtherapyppa.builtbyknights.com/.
World Population Prospects - Population Division - United Nations. https://population.un.org/wpp/DefinitionOfRegions/.
C.J.D. Hardy et al. Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia Alzheimers Dement 2024 20 195 210 10.1002/alz.13415 37548125
Lo, K.-C., Bricker-Katz, G., Ballard, K. & Piguet, O. The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study.
World Bank Open Data. World Bank Open Data https://data.worldbank.org. (Accessed: 7th February, 2024)
