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.
ContributorsAnna Volkmer, Yin Boll, Margaret Dibben, Vanessa Ward, Rosemary Townsend, Jason D Warren, Chris J D Hardy, BCPPA Patient and Public Involvement group
Disease Category: Neurology, Rehabilitation
Disease Name: Primary Progressive Aphasia (PPA)
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Any
- Consumers (patients)
- Families
- Patient perspectives
- Advisory Groups
- Consensus conference
- Semi structured discussion
- Survey
A World Café methodology was selected, because it provided a structured conversation process that encouraged people to share ideas and perspectives in a relaxed setting. This also allows for use of supported communication techniques, as described in previous qualitative co-production studies with people with dementia (Bates et al. 2022). The method is designed to promote open and intimate discussion, which in turn promotes equal relationships, thus aiming to reduce both barriers to participation and power imbalances. Five elements of the World Café method (Bates et al. 2022) were considered, including: (1) setting, (2) welcome and introduction, (3) small group rounds, (4) questions, and (5) harvest. AV and RT gave a presentation to introduce participants to the PPA event, and provided an informational talk about speech and language therapy before inviting them to participate in peer networking and/or the World Café discussion.