The emotional journey through the stages of primary progressive aphasia: seven co-produced care pathway recommendations for clinical practice

Primary progressive aphasia (PPA) describes a group of language-led dementias associated with frontotemporal dementia and Alzheimer's disease. Speech and language therapy is the main intervention for PPA. Yet, there remains little guidance on the care requirements at the six stages of PPA (identified by Hardy et al. 2024a, 2024b). With the goal of generating care pathway recommendations, this co-produced study aimed to understand the opinions and perspectives of people affected by PPA (both people with PPA and their care partners). Informed by the People with Aphasia and Other Layperson Involvement framework for guiding patient and public involvement in aphasia research, this study used World Café methods to gather opinions and perspectives of people affected by PPA about a care pathway for PPA. Consequently, a survey was used to capture the emotional responses of care partners, also co-authors of the study. The World Café event highlighted the lack of awareness of PPA, and the need for timely access to relevant professionals from pre-diagnosis, during diagnosis, immediately after and then later post-diagnosis. The survey process enabled collaborators to reflect on their emotional responses to the six stages of PPA. From these, seven care pathway recommendations were synthesised. To better understand how we can meet the needs of people with PPA and their families it is essential that research is done with, rather than about them.