Published
7 April 2026
Authors
Dr Anna Volkmer, Associate Professor, and Rosemary Townsend, Aphasia Specialist SLT, bring together years of experience with the aim of raising the profile of a relatively little-known type of dementia, primary progressive aphasia.
Primary progressive aphasia (PPA), is a rare language-led dementia, affecting an estimated 3,000-6,000 people in the UK. We each came to PPA from different paths but with the same sense of unmet need. Anna first encountered PPA in 2007 while working in a Melbourne memory clinic, noticing how similar the communication challenges were to those she had supported in stroke, brain injury and Parkinson’s and realising speech and language therapy had a clear role, even though the field was still young. Rosemary had spent decades working with people with post‑stroke aphasia, and when individuals with PPA joined the support groups she was running for stroke survivors, she recognised the distinct and different needs that they and their families had. Even as awareness grew in the early 2000s within the neurology and research fields, there was limited evidence or guidance for speech and language therapy intervention.
Reading Anna’s Bulletin article in 2011 on the role of speech and language therapy for people with PPA brought us together; that moment of connection, after working in relative isolation, sparked a shared determination to build evidence, develop support, and bring greater clinical attention to this overlooked group.
A growing focus on PPA
For many clinicians working in neurorehabilitation, the path into PPA has not always been straightforward. Early clinical experiences often involved working with people with stroke, Parkinson’s or brain injury conditions where communication difficulties are more widely recognised and better supported.
Yet we and others began to realise that people with progressive language difficulties were being referred into services without a clear pathway, and often without access to the support they needed.
The gap sparked curiosity, collaboration and ultimately action. We and colleagues began connecting, sharing ideas, building evidence and developing new approaches to therapy and support. Over time, what once felt like an isolated area of practice has evolved into a growing, international field of interest.
The role of SLTs
SLTs play a central role in the PPA pathway. From supporting differential diagnosis to delivering tailored interventions, their work focuses on helping maintain communication, relationships and impendence for as long as possible. Therapy may include supporting word finding, maintaining conversational skills, and adapting adopting communication strategies to support and maintain conversation skills. Just as importantly, we provide information and counselling, helping individuals and families understand a diagnosis that is often unfamiliar and difficult to process.
What people with PPA consistently tell us is clear: they want to maintain conversation with the people they love. Across an international study involving over 200 participants from 17 countries, the priority was strikingly consistent: staying connected with family and friends, regardless of cultural or geographical context. This reinforced a crucial message for services. Communication is central to quality of life.
Building momentum through awareness and collaboration
Raising awareness of PPA has become a key focus for us as SLTs working in this field. In recent years, we have made a concerted effort to connect clinicians, share knowledge and build confidence in supporting this population. A UK-wide SLT network has grown rapidly, now bringing together around 250 therapists, many working within NHS services where speech and language therapy for PPA may not yet be formally commissioned.
Through regular meetings, shared resources and peer support, this network has become a powerful vehicle for change, enabling us and others to advocate for PPA within our services. Alongside this, we established a dedicated annual awareness day, aiming to reach professionals involved in early diagnosis, particularly medics and nurses, and encourage timely referral to SLT services. Over time, this has broadened to include students, charities and policymakers, recognising that meaningful change requires engagement across the system.
PPA in Parliament and amplifying lived experience
One of the most significant milestones in our awareness journey has been the recent parliamentary event held at Westminster in March in partnership with RCSLT. The event brought together clinicians, researchers, policymakers and crucially people with PPA and their families. 32 individuals with lived experience attended alongside 13 MPs, creating a powerful space for shared stories and direct advocacy.
For many attendees, this was more than an awareness event: it was an opportunity to be heard. One family member reflected that the event had made “a real difference to our lives”, highlighting the importance of recognition and support at a national level, to feel part of a movement for change. Another told us:
“Thank you for the impact that speech and language therapy is having in building communication pathways and confidence for those with PPA and those closest to them. It keeps us alongside our loved ones and teaches us all that there are many ways to convey meaning.”
The event helped to raise the profile of PPA among those with the power to influence funding and service provision while reinforcing a key message: speech and language therapy support can make a meaningful difference to quality of life and is not a high-cost intervention.
A global movement
In 2025, our awareness activities spanned seven countries, with recorded webinars shared across six and participation from 12 countries overall. Our next PPA awareness day webinar takes place on 10 April 2026. This shared momentum reflects a common goal: improving care and strengthening the evidence base, not only for potential treatments, but for living well with PPA.
What began as a small group of clinicians feeling isolated in our work has now grown into a global movement. From shaping awareness campaigns to informing research priorities, individuals with lived experience are actively involved at every stage. This includes ongoing consultation, co-design of projects, and ensuring a diverse range of perspectives are represented. This approach is essential. It ensures that research and services remain grounded in what truly matters, not just extending life, but enabling people to live well, maintain relationships and stay connected to the world around them.
This year also marks a significant milestone: Anna, and colleague Dr Maya Henry from the University of Texas are together convening the first ever international conference dedicated solely to PPA taking place in London. Bringing together SLTs, researchers, medics and people with lived experience, the conference represents an important step in consolidating knowledge and shaping future practice.
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