Communication Difficulties and Management: The Lived Experience of Individuals With Frontotemporal Lobar Degeneration Spectrum Disorders

Purpose: Frontotemporal lobar degeneration (FTLD) is the neuropathology that underlies a collection of progressive clinical syndromes typically classified by the initial/primary symptom. For example, individuals with loss of word meaning as a first manifestation are often diagnosed with the semantic variant of primary progressive aphasia. Growing evidence suggests that language and communication can be impacted in all clinical syndromes across the FTLD spectrum, but the functional relevance of these symptoms has yet to be explored. Method: The Frontotemporal Degeneration (FTD) Insights Survey is the largest community survey of individuals affected by FTLD. It was administered online and included questions related to demographics, symptoms, life participation, quality of life, and experiences with and hopes for treatment. Self-reported diagnoses of respondents included the nonfluent/agrammatic, semantic, and unspecified variants of primary progressive aphasia, semantic dementia, corticobasal syndrome, progressive supranuclear palsy, and behavioral variant FTD. Here, we grouped respondents according to whether they had a language-predominant ( n = 43), motor-predominant ( n = 43), or behavior-predominant ( n = 90) variant of FTLD and used descriptive statistics to explore how they perceive their own communication difficulties and gauge their motivation for management. Results: Over 65% of respondents in each group identified changes to communication as a symptom; subsequent analyses focused on the responses of this cohort. Across groups, word finding and speaking were two of the most frequently endorsed difficulties. Over 50% of each group identified improved communication as a treatment priority, reflecting the impact that these symptoms have on their day-to-day life. Speech-language therapy is an important approach to manage these changes and minimize their impact. Whereas 76% of the language and motor groups had attended speech-language therapy, this was true for only 16% of the behavior group. Conclusions: Individuals across the FTLD spectrum experience changes to communication that impact their social engagement and quality of life. Management needs to be tailored to the needs of each individual, but recommendations are provided based on the insights and group-level preferences reported here. Future research is needed to identify current referral practices and how to increase engagement in skilled communication interventions, especially for individuals with the behavioral variant of FTD. Supplemental Material: https://doi.org/10.23641/asha.33940597