Primary Progressive Aphasia Scientific Research Network

In an ever-ageing global society, dementia is increasingly becoming a challenge with its effects being tangible
at the level of pressure on elderly care, healthcare, social relations, as well the economy to name some.
People suffering neurodegenerative disorders, as well as their families, go through a range of (increasing)
difficulties affecting everyday living and are unfortunately faced with an often severe decrease in quality of
life. Quality of life is an umbrella term that encompasses different domains, but communication and the
upkeep thereof over the lifespan is crucial for one to maintain some form of independency, uphold family
ties, and avoid overall isolation; factors which themselves are associated with, for instance, successful
psychological and speech-and-language therapy.
Primary Progressive Aphasia (PPA) is a form of dementia that is considered the language-variant of
frontotemporal lobe dementia, it can also occur in association with Alzheimer’s Disease, Corticobasal
syndrome, and Progressive supranuclear palsy. People who are diagnosed with PPA are often relatively young
at age of diagnosis and language is the primary function to decline. Due to lack of awareness and limited
standardized assessments, there is typically a long diagnostic delay. Although research in this field is clearly
moving forward, some major new challenges that necessitate further investigation as well as more intense
cooperation and knowledge exchange, can be identified. These are challenges that the scientific research
network wants to tackle over the upcoming five years:
A first challenge is the increasing number of bi- or multilingual PPA patients who receive therapy, diagnosis
and examinations in one language, unfortunately discarding the other(s). Bi- or multilingualism is often a
necessity to keep up quality-of-life (social circle, employment situation, living situation). Moreover,
typologically different languages can be spoken by the person in question, demanding expert approaches for
adaptations of test materials and diagnosis. Belgium being a melting pot of (official) languages, a demand is
present to share our knowledge and approaches in this population with regions where multilingualism is
present, or on the rise. Within the Primary Progressive Aphasia Scientific (PriPrAS) Research Network,
partners will provide theoretical recommendations on assessment of bi- or multilingual patients’ speech and
language characteristics taking into account language typology and more specifically how it influences (a)
clinical diagnostics, and (b) research designs in experimental studies, especially in typologically varied
languages. Through the creation of a webpage, the network wants to pool and share all findings and ongoing
projects as well as activities, for practitioners and researchers around the globe and make generated data
freely accessible to foster further and future research.
Secondly, in line with EU Research Council Horizon programme and UN Sustainable Development Goals
focus' on heritage languages (i.e. regional or minoritized languages, often learned at home and not in official
schooling, not the dominant official language of the country of living, though the language can be intensely
spoken in a smaller community), this network wants to pull resources to further focus on (i) bilingual PPA
patients mastering a heritage language, as well as focus on (ii) understudied languages in the PPA domain, including Slovenian, Greek, and Turkish in collaboration with external partners (see below) or and
(iii) markers of speech and language that are able to generalize across different languages. The aim is to
conjointly write up papers on the description of different PPA subtypes assessed in large cohorts in these
languages, as well as bilingual speakers of heritage languages, with the aim to pave the way for a European
Commission Horizon project submission in 2027
Thirdly, and importantly, we want to create a physical and virtual, international, platform for
methodological knowledge exchange through the organization of trainings as to mutually increase and
reinforce the investigative capacities of the different involved research centers, who each have their forte
with respect to specific tools that are used to investigate language in dementia and more specifically, PPA.
Research mobility and knowledge transfer will increase the potential of research (master) students, as well
was equip PhD students with know-how that allows for cross-modal investigation of PPA patients, and per
consequence increase success rates for applications for joint-PhD and postdoctoral grants. Moreover, we
aim to lay foundations for a MSCA Doctoral School Network application in 2029