'It Is of Course About Being Human Together': Co-Development of a Primary Progressive Aphasia Awareness Campaign to Enhance Understanding of Speech and Language Therapy.

Authors

Anna Volkmer, Rosemary Townsend, Bethany Anthony, Sharon M Antonucci, Petronilla Battista, Sandrine Basaglia-Pappas, Jeanne Gallée, Stephanie Grasso, Maya L Henry, Peter Just, Nomiki Karpathiou, Becky Khayum, Monica Lavoie, Helen Moffat, Michael Petley, Philip Robinson, Kiiya Shibata, Cathleen Taylor-Rubin, Vanessa Ward, Jason D Warren, Nikki Zimmerman, BCPPA Patient and Public Involvement Group

Published in

International journal of language & communication disorders. Volume 61. Issue 5. Pages e70324.

Abstract

Globally, there is a lack of awareness of rare dementias such as those led by language decline (the primary progressive aphasias, PPA). The main treatment for PPA is speech and language therapy, yet many people are unaware of the benefits and are often not referred on by other health care professionals. Delays in diagnosis can exacerbate a delay in accessing resources such as speech and language therapy which can assist in maintenance of communication and independence. Some people affected by PPA are able to seek out information independently and navigate their own way to these services, but others experience substantial challenges in accessing support. This study was born out of discussions with people affected by PPA who identified an urgent need to raise awareness of PPA and the benefits of speech and language therapy. The aim of the project was to co-develop a PPA awareness campaign and, through feedback, understand the impact of a co-produced and delivered awareness campaign on awareness and knowledge of PPA and the role of the speech and language therapy.
This study was informed by the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research. Key components of the PPA awareness campaign were co-developed at a World Café event with 30 people affected by PPA. Consequently, engagement data were collected from social media posts during the 10-week campaign, and registration and attendance at the co-planned webinars. A feedback survey was collected from attendees after the event, and a micro-costing analysis conducted to understand the costs.
The 10-week PPA awareness campaign focused on raising awareness of the role of speech and language therapy for PPA and a bespoke logo was developed that was shared across seven participating countries internationally. Attendees reported increased knowledge of the role of speech and language therapists and valued hearing the voices of people affected by PPA throughout the campaign. Webinar events were well attended across the participating countries with an average of 300 attendees, ranging from 233 in Greece to 369 in the UK. The cost of developing the awareness campaign was calculated at £26.20 per webinar attendee in the UK.
The PPA awareness campaign was conceived by people affected by PPA and aimed to increase awareness that speech and language therapy can support people affected by the condition. The awareness campaign developed iteratively and concluded with an awareness day event spanning seven-countries internationally which are all now permanently accessible as resources on the International Speech and Language Therapist / Pathologist PPA network (International SLT/P PPA network) website. Future campaigns will take a more focused approach by targeting more specific audiences such as trainee doctors. The co-development blueprint for the PPA awareness campaigns provides actionable, field-tested recommendations for planning future health awareness initiatives.
What is already known on the subject Primary Progressive Aphasia (PPA) is a rare language led dementia for which speech and language therapy is the main treatment. At present, people affected by PPA report a lack of information available about speech and language therapy. This can perpetuate feelings of loneliness and social isolation. What this paper adds to the existing knowledge This paper provides the key components of a co-developed PPA awareness campaign and describes a collaboration across organisations and countries to deliver the first year of the PPA awareness campaign. Future PPA awareness campaigns will build on this, by targeting specific audiences and aiming to increase knowledge and awareness of the role of the speech and language therapist. What are the clinical implications of this study? Increasing awareness of PPA and the role of the speech and language therapist has been identified by people with lived experience in the UK, as the core care pathway for people with PPA and their families. The PPA awareness campaign has made this information available to people affected by PPA and health care professionals. This includes a set of recommendations for the development of future similar awareness campaigns beyond PPA.

PMID:
42706934
Bibliographic data and abstract were imported from PubMed on 08 Sep 2026.

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