Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK

Background Primary progressive aphasia (PPA) describes a heterogeneous group of language-led dementias. People with this type of dementia are increasingly being referred to speech and language therapy (SLT) services. Yet, there is a paucity of research evidence focusing on PPA interventions and little is known about SLT practice in terms of assessment and provision of intervention. Aims To survey the practices of SLTs in the areas of assessment and intervention for people with PPA. Methods & Procedures A 37-item, pilot-tested survey was distributed electronically through the Royal College of Speech and Language Therapists (RCSLT), Clinical Excellence Networks (CENs) and social media networks. Survey items included questions on care pathways, assessment and intervention approaches, and future planning. Analysis was conducted using descriptive statistics and thematic analysis. Outcomes & Results A total of 105 SLTs completed the survey. Respondents reported more frequently using formal assessment tools designed for stroke-related aphasia than for dementia. Informal interviews were reportedly always used during assessment by almost 80% of respondents. Respondents were significantly more likely to use communication partner training than impairment-focused interventions. Goal attainment was the most commonly used outcome measure. Respondents provided 88 goal examples, which fell into six themes: communication aid; conversation; functional communication; impairment focused; specific strategy; and communication partner. Additionally, respondents reported addressing areas such as future deterioration in communication and cognition, decision-making and mental capacity, and driving. Ten (9.4%) respondents reported the existence of a care pathway for people with PPA within their service. Conclusions & Implications This survey highlights the range of current PPA assessment and intervention practices in use by the respondents. Communication partner training is commonly used by the surveyed SLTs, despite the lack of research evidence examining its effectiveness for PPA. There is a need to develop evidence-based care pathways for people with PPA in order to advocate for further commissioning of clinical services.