Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus

A. Volkmer; J. Cartwright; L. Ruggero; A. Beales; J. Gallée; S. Grasso; M. Henry; R. Jokel; J. Kindell; R. Khayum; M. Pozzebon; E. Rochon; C. Taylor-Rubin; R. Townsend; F. Walker; S. Beeke; D. Hersh

doi:10.1080/09638288.2022.2051080

Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus

A. Volkmer^*, J. Cartwright, L. Ruggero, A. Beales, J. Gallée, S. Grasso, M. Henry, R. Jokel, J. Kindell, R. Khayum, M. Pozzebon, E. Rochon, C. Taylor-Rubin, R. Townsend, F. Walker, S. Beeke, D. Hersh

^*Corresponding author for this work

School of Psychological Sciences

Research output: Contribution to journal › Article › peer-review

53 Citations (Scopus)

78 Downloads (Pure)

Abstract

Purpose: Primary progressive aphasia (PPA) is a language-led dementia associated with Alzheimer’s pathology and fronto-temporal lobar degeneration. Multiple tailored speech and language interventions have been developed for people with PPA. Speech and language therapists/speech-language pathologists (SLT/Ps) report lacking confidence in identifying the most pertinent interventions options relevant to their clients living with PPA during their illness trajectory. Materials and methods: The aim of this study was to establish a consensus amongst 15 clinical-academic SLT/Ps on best practice in selection and delivery of speech and language therapy interventions for people with PPA. An online nominal group technique (NGT) and consequent focus group session were held. NGT rankings were aggregated and focus groups video recorded, transcribed, and reflexive thematic analysis undertaken. Results: The results of the NGT identified 17 items. Two main themes and seven further subthemes were identified in the focus groups. The main themes comprised (1) philosophy of person-centredness and (2) complexity. The seven subthemes were knowing people deeply, preventing disasters, practical issues, professional development, connectedness, barriers and limitations, and peer support and mentoring towards a shared understanding. Conclusions: This study describes the philosophy of expert practice and outlines a set of best practice principles when working with people with PPA.Implications for rehabilitation Primary progressive aphasia (PPA) describes a group of language led dementias which deteriorate inexorably over time. Providing speech and language therapy for people with PPA is complex and must be person centred and bespoke. This study describes the philosophy of expert practice and outlines a set of best practice principles for speech and language therapists/pathologists working with people with people with PPA.

Original language	English
Pages (from-to)	1063-1078
Number of pages	16
Journal	Disability and Rehabilitation
Volume	45
Issue number	6
DOIs	https://doi.org/10.1080/09638288.2022.2051080
Publication status	Published - Mar 2023

Bibliographical note

Copyright the Author(s) 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

best practice principles
consensus
primary progressive aphasia
speech and language therapy
speech-language pathology

Access to Document

10.1080/09638288.2022.2051080Licence: CC BY

Publisher version (open access)Final published version, 3.97 MBLicence: CC BY

Cite this

Volkmer, A., Cartwright, J., Ruggero, L., Beales, A., Gallée, J., Grasso, S., Henry, M., Jokel, R., Kindell, J., Khayum, R., Pozzebon, M., Rochon, E., Taylor-Rubin, C., Townsend, R., Walker, F., Beeke, S., & Hersh, D. (2023). Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus. Disability and Rehabilitation, 45(6), 1063-1078. https://doi.org/10.1080/09638288.2022.2051080

@article{79d74dcdee4944fe97a5a72350603048,

title = "Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus",

abstract = "Purpose: Primary progressive aphasia (PPA) is a language-led dementia associated with Alzheimer{\textquoteright}s pathology and fronto-temporal lobar degeneration. Multiple tailored speech and language interventions have been developed for people with PPA. Speech and language therapists/speech-language pathologists (SLT/Ps) report lacking confidence in identifying the most pertinent interventions options relevant to their clients living with PPA during their illness trajectory. Materials and methods: The aim of this study was to establish a consensus amongst 15 clinical-academic SLT/Ps on best practice in selection and delivery of speech and language therapy interventions for people with PPA. An online nominal group technique (NGT) and consequent focus group session were held. NGT rankings were aggregated and focus groups video recorded, transcribed, and reflexive thematic analysis undertaken. Results: The results of the NGT identified 17 items. Two main themes and seven further subthemes were identified in the focus groups. The main themes comprised (1) philosophy of person-centredness and (2) complexity. The seven subthemes were knowing people deeply, preventing disasters, practical issues, professional development, connectedness, barriers and limitations, and peer support and mentoring towards a shared understanding. Conclusions: This study describes the philosophy of expert practice and outlines a set of best practice principles when working with people with PPA.Implications for rehabilitation Primary progressive aphasia (PPA) describes a group of language led dementias which deteriorate inexorably over time. Providing speech and language therapy for people with PPA is complex and must be person centred and bespoke. This study describes the philosophy of expert practice and outlines a set of best practice principles for speech and language therapists/pathologists working with people with people with PPA.",

keywords = "best practice principles, consensus, primary progressive aphasia, speech and language therapy, speech-language pathology",

author = "A. Volkmer and J. Cartwright and L. Ruggero and A. Beales and J. Gall{\'e}e and S. Grasso and M. Henry and R. Jokel and J. Kindell and R. Khayum and M. Pozzebon and E. Rochon and C. Taylor-Rubin and R. Townsend and F. Walker and S. Beeke and D. Hersh",

note = "Copyright the Author(s) 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher. ",

year = "2023",

month = mar,

doi = "10.1080/09638288.2022.2051080",

language = "English",

volume = "45",

pages = "1063--1078",

journal = "Disability and Rehabilitation",

issn = "0963-8288",

publisher = "Informa Healthcare",

number = "6",

}

Volkmer, A, Cartwright, J, Ruggero, L, Beales, A, Gallée, J, Grasso, S, Henry, M, Jokel, R, Kindell, J, Khayum, R, Pozzebon, M, Rochon, E, Taylor-Rubin, C, Townsend, R, Walker, F, Beeke, S & Hersh, D 2023, 'Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus', Disability and Rehabilitation, vol. 45, no. 6, pp. 1063-1078. https://doi.org/10.1080/09638288.2022.2051080

TY - JOUR

T1 - Principles and philosophies for speech and language therapists working with people with primary progressive aphasia

T2 - an international expert consensus

AU - Volkmer, A.

AU - Cartwright, J.

AU - Ruggero, L.

AU - Beales, A.

AU - Gallée, J.

AU - Grasso, S.

AU - Henry, M.

AU - Jokel, R.

AU - Kindell, J.

AU - Khayum, R.

AU - Pozzebon, M.

AU - Rochon, E.

AU - Taylor-Rubin, C.

AU - Townsend, R.

AU - Walker, F.

AU - Beeke, S.

AU - Hersh, D.

N1 - Copyright the Author(s) 2022. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

PY - 2023/3

Y1 - 2023/3

N2 - Purpose: Primary progressive aphasia (PPA) is a language-led dementia associated with Alzheimer’s pathology and fronto-temporal lobar degeneration. Multiple tailored speech and language interventions have been developed for people with PPA. Speech and language therapists/speech-language pathologists (SLT/Ps) report lacking confidence in identifying the most pertinent interventions options relevant to their clients living with PPA during their illness trajectory. Materials and methods: The aim of this study was to establish a consensus amongst 15 clinical-academic SLT/Ps on best practice in selection and delivery of speech and language therapy interventions for people with PPA. An online nominal group technique (NGT) and consequent focus group session were held. NGT rankings were aggregated and focus groups video recorded, transcribed, and reflexive thematic analysis undertaken. Results: The results of the NGT identified 17 items. Two main themes and seven further subthemes were identified in the focus groups. The main themes comprised (1) philosophy of person-centredness and (2) complexity. The seven subthemes were knowing people deeply, preventing disasters, practical issues, professional development, connectedness, barriers and limitations, and peer support and mentoring towards a shared understanding. Conclusions: This study describes the philosophy of expert practice and outlines a set of best practice principles when working with people with PPA.Implications for rehabilitation Primary progressive aphasia (PPA) describes a group of language led dementias which deteriorate inexorably over time. Providing speech and language therapy for people with PPA is complex and must be person centred and bespoke. This study describes the philosophy of expert practice and outlines a set of best practice principles for speech and language therapists/pathologists working with people with people with PPA.

AB - Purpose: Primary progressive aphasia (PPA) is a language-led dementia associated with Alzheimer’s pathology and fronto-temporal lobar degeneration. Multiple tailored speech and language interventions have been developed for people with PPA. Speech and language therapists/speech-language pathologists (SLT/Ps) report lacking confidence in identifying the most pertinent interventions options relevant to their clients living with PPA during their illness trajectory. Materials and methods: The aim of this study was to establish a consensus amongst 15 clinical-academic SLT/Ps on best practice in selection and delivery of speech and language therapy interventions for people with PPA. An online nominal group technique (NGT) and consequent focus group session were held. NGT rankings were aggregated and focus groups video recorded, transcribed, and reflexive thematic analysis undertaken. Results: The results of the NGT identified 17 items. Two main themes and seven further subthemes were identified in the focus groups. The main themes comprised (1) philosophy of person-centredness and (2) complexity. The seven subthemes were knowing people deeply, preventing disasters, practical issues, professional development, connectedness, barriers and limitations, and peer support and mentoring towards a shared understanding. Conclusions: This study describes the philosophy of expert practice and outlines a set of best practice principles when working with people with PPA.Implications for rehabilitation Primary progressive aphasia (PPA) describes a group of language led dementias which deteriorate inexorably over time. Providing speech and language therapy for people with PPA is complex and must be person centred and bespoke. This study describes the philosophy of expert practice and outlines a set of best practice principles for speech and language therapists/pathologists working with people with people with PPA.

KW - best practice principles

KW - consensus

KW - primary progressive aphasia

KW - speech and language therapy

KW - speech-language pathology

UR - https://www.scopus.com/pages/publications/85128076053

U2 - 10.1080/09638288.2022.2051080

DO - 10.1080/09638288.2022.2051080

M3 - Article

C2 - 35352609

AN - SCOPUS:85128076053

SN - 0963-8288

VL - 45

SP - 1063

EP - 1078

JO - Disability and Rehabilitation

JF - Disability and Rehabilitation

IS - 6

ER -

Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus

Abstract

Bibliographical note

Keywords

Access to Document

Other files and links

Fingerprint

Cite this