FTD Registry Presents Poster at Latinos & Alzheimer’s Symposium: April 2022

FTD Disorders Registry (FTDDR) Director Dianna Wheaton, MS, PhD, CHES, presented a poster titled Perceptions of Frontotemporal Degeneration Among Latinos at the 3rd Latinos & Alzheimer’s Symposium on April 25-26, 2022. The hybrid event was streamed online and held in person in Bonita Springs, Florida.

The poster is a subset of the FTD Insights Survey which was completed by almost 1,800 people from October 2020 through March 2021. The Association for Frontotemporal Degeneration (AFTD) and the Registry collaborated to develop the 191-question survey.

The questions were developed in preparation for an Externally Led Patient-Focused Drug Development meeting, which was held in March 2021, and its subsequent Voice of the Patient report. The online survey was administered by the Registry and distributed through email and social channels by AFTD, FTDDR, and the Genetic Frontotemporal Dementia Initiative (GENFI) United Kingdom cohort. Most participants were from the United States and Canada.

Persons diagnosed with FTD, their family members, and caregivers were invited to complete the survey in order to share their experiences from their perspectives. Respondents were asked about diagnosis, symptoms, and willingness to participate in research and seek treatments.

The Latino perspectives reported in the FTD Insights Survey represented a small sample size. Although original survey recruitment sought to lower barriers, it did not include targeted efforts to enhance the diversity of respondents. This underscores that active methods are often needed to ensure more equitable representation.

Participating Latinos had an above-average level of education, were able to access an FTD diagnosis and care, and were motivated to complete the survey, which may not represent Latinos in the general population. Their reported experiences overlapped with other respondents, but highlighted differences included that Latinos had more difficulty accessing accurate diagnoses and had greater challenges with communication.

There remain many questions regarding the lived experience of FTD in Latino populations. Addressing these issues is key to improving diagnosis, care, and access to research opportunities.

The symposium discussed the disparities in risk, early detection, and care of dementia in Latinos. The poster was part of the Psychosocial Factors and Environmental Design category.

Poster authors include FTD Registry Manager Lakecia Vincent, MPH, MCHES; AFTD’s Director of Research Engagement Shana Golembo Dodge, PhD; AFTD’s Senior Director of Scientific Initiatives and FTDDR President Penny A. Dacks, PhD; and Dr. Wheaton who recorded the virtual poster presentation.