Abstract
INTRODUCTION: Assessments of communication for people living with primary progressive aphasia (PwPPA) remain limited. This work describes the development of a strengths-based, ecologically valid instrument - the Progressive Aphasia Communication Toolkit (PACT). METHODS: This work consisted of five experiments: two to develop (Experiments 1 and 2) and three to pilot (Experiments 3 to 5) a novel instrument for PPA. Ninety-five individuals worldwide contributed to this work: 80 researchers and clinicians, nine PwPPA, and six care partners. RESULTS: Experiments 1 and 2 yielded a four-scale instrument comprising quantitative and qualitative feedback. Experiments 3 to 5 resulted in structural refinement and digitization of the tool, revealed strong PwPPA and care partner acceptance of the PACT, and demonstrated high inter-rater agreement for general observability (91%) and perceived communication strength (85%). DISCUSSION: Current findings indicate that the PACT provides a holistic profile of communication strengths for PwPPA and can guide clinicians in developing functional therapeutic targets. HIGHLIGHTS: Instruments to evaluate communicative competence in PwPPA are centered on diagnosis and impairment.Documentation of communication strengths has direct implications for person-centered care and behavioral intervention.The PACT was developed in partnership with expert clinicians, researchers, PwPPA, and care partners.The PACT captures functional, real-world communication ability through a structured conversation and provides a shared framework to describe communicative competence across disciplines.Preliminary findings support that the PACT is ecologically valid, minimally burdensome, preferred by PwPPA and care partners, and clinically feasible for clinicians and researchers.Future work will serve to develop cultural-linguistic adaptations of the PACT and investigate the instrument's validity, reliability, and feasibility as an assessment procedure for PwPPA in a larger sample.