New Research Highlights Communication Challenges Across the FTD Spectrum

A new study published in the American Journal of Speech-Language Pathology is shedding light on an important aspect of life with frontotemporal lobar degeneration (FTLD): how changes in communication affect daily life and how people across the FTD spectrum view communication as a treatment priority.

Importantly, the study demonstrates the value of listening directly to people living with FTLD. Researchers used data from the FTD Insights Survey, a community survey co-administered by the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry.

The study, “Communication Difficulties and Management: The Lived Experience of Individuals With Frontotemporal Lobar Degeneration Spectrum Disorders,” was led by Gabriela Meade and Rene L. Utianski of the Mayo Clinic and includes FTD Disorders Registry team members Bob Reinecker and Carrie Milliard as co-authors.

Turning community insights into research

The FTD Insights Survey was conducted between October 2020 and March 2021 to better understand the lived experience of people across the FTLD spectrum. The survey was developed collaboratively by experts from AFTD, the FTD Disorders Registry, and the broader FTD community. It included questions about symptoms, daily life, quality of life, and experiences with and hopes for treatment.

For this study, researchers analyzed responses from 176 people diagnosed with an FTLD spectrum disorder who lived in North America. Respondents included people with primary progressive aphasia, behavioral variant FTD, progressive supranuclear palsy, and corticobasal syndrome.

The study highlights what makes patient-reported data so valuable. Rather than looking only at performance on formal clinical assessments, the researchers were able to examine how people themselves described communication changes and the ways those changes affected their everyday lives. The authors note that the Insights Survey represents the largest available patient-reported dataset focused on lived experience in FTLD and provides an opportunity to generate research questions and identify priorities for future intervention-focused research.

Communication changes extend across the FTD spectrum

The findings reinforce that communication challenges are not limited to people whose diagnosis primarily affects language.

At least 65% of respondents in each of the language-, motor-, and behavior-predominant groups reported changes in communication. Word-finding difficulties were particularly common, while speaking, writing, and other aspects of communication were also frequently reported.

These challenges can have a meaningful impact on social connection. More than 45% of respondents in each group reported difficulty conversing with family or friends. People in the behavior-predominant group also frequently reported difficulty attending social gatherings, highlighting how communication changes can affect participation and relationships.

Communication is a priority for treatment

One of the study's most important findings is that people across the FTLD spectrum expressed a strong interest in improving communication.

More than half of respondents in each group identified the ability to communicate as something they would most want a treatment to improve. This included 90% of respondents in the language-predominant group, 60% in the behavior-predominant group, and 55% in the motor-predominant group.

At the same time, the study identified a significant gap in access to speech-language therapy. While 76% of respondents in both the language- and motor-predominant groups had attended speech-language therapy, only 16% of respondents in the behavior-predominant group had done so, despite recognizing communication changes and expressing interest in improving communication.

The authors note that this disparity may reflect factors such as referral practices, awareness of the role of speech-language pathologists, and misconceptions about whether communication-focused intervention can help people with diagnoses in which language is not the primary symptom. They call for further research and greater awareness to ensure people across the FTLD spectrum have equitable access to communication support.

The power of community-reported data

This publication offers an important example of how information shared by the FTD community can contribute to research.

The FTD Insights Survey was created to capture experiences that may not always be reflected in traditional clinical measures. By asking people about their symptoms, daily lives, priorities, and hopes for treatment, researchers can identify questions that matter to the community and use those insights to guide future research.

The study authors acknowledge the more than 170 people whose survey responses contributed to this work, as well as the many individuals who helped develop and disseminate the Insights Survey. The survey was developed to accompany AFTD's Voice of the Patient report and represents a collaborative effort among AFTD, the FTD Disorders Registry, researchers, and members of the broader FTD community.

For the FTD Disorders Registry, this publication is another example of why collecting and sharing the lived experiences of people with FTD and their families is so important. Community insights can help researchers better understand the realities of FTD, identify areas where additional support is needed, and inform the development of future research and interventions.

Every response can help build a clearer picture of FTD. And that picture can help shape the research questions of tomorrow.