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INTRODUCTIONInterventions 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.METHODSFollowing 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.RESULTSThe 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.DISCUSSIONFurther 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.

This article draws upon six social research studies completed by members of the Dementia and Ageing Research Team at The University of Manchester and their associated networks over an eight-year period (2011–2019) with the aim of constructing a definition of ‘being in the moment’ and situating it within a continuum of moments that could be used to contextualise and frame the lived experience of dementia. Using the approach formulated by Pound et al. (2005) in synthesising qualitative studies, we identified this continuum of moments as comprising four sequential and interlinked steps: (a) ‘creating the moment’, defined as the processes and procedures necessary to enable being in the moment to take place – the time necessary for this to occur can range from fleeting to prolonged; (b) ‘being in the moment’, which refers to the multi-sensory processes involved in a personal or relational interaction and embodied engagement – being in the moment can be sustained through creativity and flow; (c) ‘ending the moment’, defined as when a specific moment is disengaged – this can be triggered by the person(s) involved consciously or subconsciously, or caused by a distraction in the environment or suchlike; and (d) ‘reliving the moment’, which refers to the opportunity for the experience(s) involved in ‘being in the moment’ to be later remembered and shared, however fragmentary, supported or full the recall.

This article draws upon six social research studies completed by members of the Dementia and Ageing Research Team at The University of Manchester and their associated networks over an eight-year period (2011–2019) with the aim of constructing a definition of ‘being in the moment’ and situating it within a continuum of moments that could be used to contextualise and frame the lived experience of dementia. Using the approach formulated by Pound et al. (2005) in synthesising qualitative studies, we identified this continuum of moments as comprising four sequential and interlinked steps: (a) ‘creating the moment’, defined as the processes and procedures necessary to enable being in the moment to take place – the time necessary for this to occur can range from fleeting to prolonged; (b) ‘being in the moment’, which refers to the multi-sensory processes involved in a personal or relational interaction and embodied engagement – being in the moment can be sustained through creativity and flow; (c) ‘ending the moment’, defined as when a specific moment is disengaged – this can be triggered by the person(s) involved consciously or subconsciously, or caused by a distraction in the environment or suchlike; and (d) ‘reliving the moment’, which refers to the opportunity for the experience(s) involved in ‘being in the moment’ to be later remembered and shared, however fragmentary, supported or full the recall.