Personal Experiences with FTD Stigma – Persons with FTD Advisory Council
For persons diagnosed with FTD and their care partners
Expanding on their morning presentation, “Insights on Stigma,” AFTD’s Persons with FTD Advisory Council will take a deeper look at the stigma associated with FTD in this breakout session for persons diagnosed with FTD. Council members will share personal experiences in which they’ve been confronted with stigma, and talk about strategies that they have developed to respond to such scenarios. Attendees will also be able to connect with and learn from others living with an FTD diagnosis.

Care for Caregivers: Helping FTD Care Partners Tend to Their Own Needs – Arlene Schollaert, LCSW
FTD care partners often hear that to provide the best possible care for their loved one, they must make time to care for themselves. But finding that time and taking advantage of self-care opportunities can be extremely difficult. In this session, Arlene Schollaert of Amazing Place, a Houston nonprofit that focuses on dementia care, will identify FTD-specific barriers to self-care, offer strategies to overcome them, and reflect on the impact of grief, loss, and guilt in the caregiving journey.

Genetic FTD Research: A Townhall Discussion – Penny Dacks, PhD (moderator)
Clinical research on all forms of FTD is actively underway. The most advanced research is on genetic FTD, particularly FTD-GRN, with multiple active trials testing experimental treatments that might slow or delay disease. This townhall discussion will encourage attendees to engage in active dialogue with FTD experts who are at the forefront of research into genetic FTD. Attendees can submit questions ahead of time or bring their questions to this interactive session.

Note: To encourage open discussion about a topic that can be sensitive for many, this session will not be live-streamed or recorded.

Primary Progressive Aphasia: Approaches to Treatment – Maya Henry, PhD
Primary progressive aphasia (PPA) is a variant of FTD that affects one’s ability to produce and understand language. In this session, Dr. Maya Henry of the University of Texas at Austin will provide an overview of PPA and how it differs from other common FTD variants. She will also provide an update on research into treatments for PPA, and discuss nonpharmacological interventions designed to slow the loss of language abilities in persons diagnosed.

Building Resilience through Mindfulness – Angela Lunde, MA
Mindfulness can be defined as the act of paying focused, nonjudgmental attention to one’s experience in the present moment. Mindfulness-based interventions have been shown to improve psychological well-being, and, according to preliminary research, can particularly benefit persons diagnosed with dementia and their care partners. But mindfulness does not come naturally to most people. This session explains why FTD care partners may want to devote time to cultivating mindfulness, both to improve their own mental health and to position themselves to provide care and support .

FTD Diagnosis and the Hispanic/Latino Community – Patricia Garcia, PsyD, MS; Alicia S. Parker, MD; A. Campbell Sullivan, PsyD, ABPP-CN
Content targeted to healthcare professionals. Families welcome.
The road to an FTD diagnosis can be long and frustrating, comprising many visits to a variety of healthcare providers over the course of several years. In fact, the average FTD diagnosis takes 3.6 years to obtain after symptoms first appear. But anecdotal data, combined with general information on health outcomes by race, suggest that Hispanic/Latino families facing FTD face an even longer journey. In this session, specialists from Indiana University and the University of Texas at Austin delve into some of the specific challenges faced by Hispanic/Latino families, and highlight approaches that can help increase the rate of accurate diagnoses in this community.