Search

Introduction: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention., Methods: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 - systematic review to identify measures; Stage 2 - consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 - e-Delphi consensus with 57 researchers., Results: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments., Discussion: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders., Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid., (© 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

The term primary progressive aphasia (PPA) describes a group of neurodegenerative disorders with predominant speech and language dysfunction as their main feature. There are three main variants - the semantic variant, the nonfluent or agrammatic variant and the logopenic variant - each with specific linguistic deficits and different neuroanatomical involvement. There are currently no curative treatments or symptomatic pharmacological therapies. However, speech and language therapists have developed several impairment-based interventions and compensatory strategies for use in the clinic. Unfortunately, multiple barriers still need to be overcome to improve access to care for people with PPA, including increasing awareness among referring clinicians, improving training of speech and language therapists and developing evidence-based guidelines for therapeutic interventions. This review highlights this inequity and the reasons why neurologists should refer people with PPA to speech and language therapists., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Semantic dementia is a rarer dementia, classified as a type of frontotemporal dementia and a variant of primary progressive aphasia. Studies examining conversation in this condition and interventions to enhance participation in family life present as gaps in the research literature., Methods: Working with one family on a longitudinal basis, this study used conversation analysis and narrative analysis to provide a detailed assessment of communication. This information was used to design an individually tailored life story intervention to facilitate family interaction: a co-produced life story music DVD., Results: This intervention offered the family a resource that allowed the person with semantic dementia to display areas of retained competence and enhanced participation in interaction in a way that was not typically present in everyday conversation., Conclusions: It is argued that fostering greater opportunities for such in-the-moment connections is an important goal for intervention, particularly when language may be significantly compromised., Competing Interests: Disclosure statement No potential conflict of interest was reported by the authors.