Global Perspectives on the Management of Primary Progressive Aphasia

Abstract

Speech-language therapists/pathologists (SLT/Ps) are key professionals in the management and treatment of primary progressive aphasia (PPA), however, there are gaps in education and training within the discipline, with implications for skills, confidence, and clinical decision-making. This survey aimed to explore the areas of need amongst SLT/Ps working with people living with PPA (PwPPA) internationally to upskill the current and future workforce working with progressive communication disorders. One hundred eighty-five SLT/Ps from 27 countries who work with PwPPA participated in an anonymous online survey about their educational and clinical experiences, clinical decision-making, and self-reported areas of need when working with this population. Best practice principles for SLT/Ps working with PwPPA were used to frame the latter two sections of this survey. Only 40.7% of respondents indicated that their university education prepared them for their current work with PwPPA. Competency areas of "Knowing people deeply," "Practical issues," "Connectedness," and "Preventing disasters" were identified as the basic areas of priority and need. Respondents identified instructional online courses (92.5%), sample tools and activities for interventions (64.8%), and concrete training on providing care for advanced stages and end of life (58.3%) as central areas of need in their current work. This is the first international survey to comprehensively explore the perspectives of SLT/Ps working with PwPPA. Based on survey outcomes, there is a pressing need to enhance current educational and ongoing training opportunities to better promote the well-being of PwPPA and their families, and to ensure appropriate preparation of the current and future SLT/P workforce.

Figure 1. Global distribution of participant sample.

Results consisted of 185 respondents from 27 countries from six continents. Map was created through mapchart.net.

Figure 2. Rankings of confidence, priority, competency, and need for the seven best practice principles (1 = highest and 7 = lowest).

Percentages indicate the agreement of participants for each numerical rank. Illustrated in the far-left column (red), respondents ranked themselves to be most confident in “Knowing People Deeply” and least confident in “Preventing Disasters”. In the second column (yellow), the most agreement was found for “Knowing People Deeply,” “Practical Issues,” and “Connectedness” as top priorities for a SLT/P working with a new client with PPA, with minimal agreement on priorities for the remaining principles. Basic competency rankings of the best practice principles, indicated in the third column (green), revealed strongest support for “Knowing People Deeply,” “Practical Issues,” and “Connectedness” as top competencies for SLT/Ps working with PwPPA. Finally, thematic analyses of areas of need in the far-right column (blue), revealed that “Professional Development,” “Knowing People Deeply,” and “Preventing Disasters” were ranked as in most critical need of additional support and resources for SLT/Ps.

Figure 3. Reported SLT/P Confidence by Experience.

For each best practice principle, SLT/P confidence is represented by the relative years of experience of working with PwPPA. Average reported levels of confidence ranged between slightly confident and confident, with average upwards shifts towards somewhat confident seen by the time 4 to 6 years of experience were gathered.