Agenda Set for 2023 AFTD Education Conference
Pre-Conference Sessions Added for In-person attendees
The Association for Frontotemporal Degeneration (AFTD) will bring together people and families affected by FTD at its annual gathering on Friday, May 5, 2023, in St. Louis, Missouri.
Sessions have been announced for those attending the AFTD 2023 Education Conference both in person and virtually, including in-person pre-conference sessions, breakout sessions, and the conference agenda.
AGENDA - May 5, 2023
All sessions listed below are available for everyone. Times listed are Central Daylight Time (CDT), which is 6 hours behind Coordinated Universal Time (UTC).
- 10:00 a.m. Welcome
- 10:15 a.m. Keynote Address: Recent Advancements and the Hope Ahead
Bruce Miller, MD, University of California, San Francisco
- 10:45 a.m. Being Thankful in Our Own Words
AFTD’s Persons with FTD Advisory Council
- 11:15 a.m. Break
- 11:45 a.m. Morning Breakouts
- 12:30 p.m. Lunch
- 1:30 p.m. AFTD Update
Susan L-J Dickinson, MSGC, AFTD CEO
- 1:45 p.m. Promising Paths to Discovery
Qinwen Mao, MD, PhD, University of Utah
Matthew Nolan, PhD, Massachusetts General Hospital
Emiliano Santarnecchi, PhD, Harvard Medical School
- 2:15 p.m. You Are Not Alone: Managing a System That Isn’t Set Up for FTD
Jalayne Arias, JD, MA, Georgia State University School of Public Health
- 2:45 p.m. Break
- 3:15 p.m. Afternoon Breakouts
- 4:00 p.m. Break
- 4:30 p.m. Understanding the Unique Needs of FTD Care Partners
Joseph Gaugler, PhD, University of Minnesota
Allison Lindauer, PhD, Oregon Health & Science University
Darby Morhardt, PhD, Northwestern University
- 5:00 p.m. Closing Session
Every FTD Story Counts: Using Your Voice to Make a Difference
- 5:30-7:00 p.m. Reception
AFTD Comstock Travel Grants are available to help with travel-related expenses for persons with FTD and their care partners who are attending in St. Louis.
PRE-CONFERENCE IN-PERSON EVENTS
Persons attending the conference onsite at the Marriott St. Louis Grand are being offered the following additional opportunities to connect with the community and find support for their FTD journey.
May 4, 2023 - after 4:00 p.m.
“FTD in the Arts” will be held Thursday, May 4, 2023. It will feature various community members sharing their FTD journey through different forms of creative expression. Sessions will begin at or after 7:45 p.m.
- A screening and Q&A for a short film, Pedacito de Carne, directed by Akilah A. Walker and written by Diana Gonzalez-Morett
- A performance of Bob Powers’s play Chasing Rainbows: A Story of Love, Loss, and Finding Purpose
- Other programming to be announced
May 5, 2023 - 8:00 - 9:30 a.m. CDT
In-person attendees also can choose from three sessions Friday morning before the full conference begins:
Familial FTD: Resources, Needs, and Emerging Opportunities session - Does your family have a known genetic variant? Do you want to learn more about the relationship between FTD and your genes (C9orf72, GRN, MAPT, VCP, FUS, or others)? This session will educate families on available resources and current clinical trials. It will also foster engagement with others who have the same concerns, and explain what actions you can take.
Persons with FTD networking breakfast - People with FTD and their care partners are welcome to join members of AFTD’s Persons with FTD Advisory Council at 8:00 a.m. First, pick up items from the continental breakfast and then bring your food and drink to the Landmark 5 room to eat and network with others living with a diagnosis.
Breathe, Move, and Take Care - Corey Esannason, yoga teacher and former AFTD Ambassador, will guide participants through simple yoga poses, breathing exercises, relaxation techniques, and meditation. As the daughter of a parent diagnosed with FTD, Corey recognizes the need for simple and tangible self-care exercises.
Sessions are listed below by whether you are attending in person or virtually.
Morning Breakouts 11:45 a.m.
Building Our Own Toolbox – AFTD’s Persons with FTD Advisory Council
Being diagnosed with FTD can be overwhelming. Where does one begin this journey? Members of the AFTD's Persons with FTD Advisory Council will offer suggestions for navigating these difficult waters, while inviting others diagnosed with FTD to share their own tips and ideas on how to best meet the many changes and challenges that FTD brings. This session is intended for people with FTD to share their experiences with each other. People with FTD may attend with a care partner to provide support and assistance as needed, but we ask any care partners attending to refrain from joining the discussion.
PPA Beyond Language – Becky Khayum, MS, CCC-SLP
Primary progressive aphasia (PPA) is characterized predominantly by the gradual loss of one’s ability to speak, read, write, and understand what others are saying, with other cognitive symptoms potentially emerging as the disease progresses. In this session, speech-language pathologist Becky Khayum will show how PPA affects the brain, review non-language symptoms that may arise, and summarize how person-centered strategies may help to manage these symptoms, allowing the person diagnosed to participate in meaningful life activities.
Understanding and Approaching bvFTD Symptoms – Stacey Barton, MSW, LCSW
Symptoms common to behavioral variant FTD (bvFTD), including apathy, disinhibition, and compulsive behaviors, can present unique challenges for care partners. In this session, Stacey Barton of Washington University’s School of Medicine will identify and describe bvFTD’s more demanding symptoms and talk about approaches to care that support both care partners and the person with FTD.
In-Person & Virtual
What Comes Next: Supporting Kids and Teens After an FTD Diagnosis – Diana Cose; Bree Ruge, CDP
A parent’s FTD diagnosis can upend families, unexpectedly turning children and teenagers into dementia care partners. This session offers insights on research with children and teens who have been care partners and strategies for supporting kids and teens during the FTD journey. Join staff from Lorenzo’s House, an organization that supports families navigating young-onset dementia, to discuss coping mechanisms and strategies for tending to the mental health of children and teens, and ways to maintain self-care along their FTD journey.
Helping Families Get on the Same Page – Gail H. Goodman; Jennifer Heston-Mullins, PhD, LISW
Content targeted to healthcare professionals. Families welcome.
Families confronted with FTD face the critical task of agreeing on the care needs of the person diagnosed, the most appropriate plan of care, and what type of outside help to seek. But given the nature of families, such consensus often proves elusive. In this session, Jennifer Heston-Mullins, a social worker and researcher, and Gail H. Goodman, a family mediator, offer practical approaches to help families successfully communicate about care challenges in FTD, come to agreement, and begin to work together.
Comfort Care, Hospice, and End-of-Life Considerations in FTD – Maribeth Gallagher, DNP
As families navigate FTD’s advanced stages, hospice services – an interdisciplinary approach to care that focuses on maximizing whole-person comfort and quality of life – can provide skillful, compassionate support. This session will provide families with an overview of hospice services, dispel common myths, review evidence-based benefits associated with hospice care, and explore specific considerations for people living with FTD.
Afternoon Breakout Sessions 3:15 p.m.
Yes, And…: How Improv Techniques Can Strengthen Communication in FTD – Ann Marie Mohr, MA
“Yes, and…” is the basic principle behind improvisational acting, teaching performers to accept their scene partners’ ad-libs, and then build on them. This session will provide a positive and open environment for participants to learn how “Yes, and…” and other applied improv techniques can benefit families with FTD, including by diffusing challenging situations, providing greater connection, reducing stress, and improving quality of life.
FTD Strategies in Everyday Life: Improving Home Safety and Well-Being – Sheila Lynch, OTR/L; Amy Sobrino, MSW, LCSW
FTD forces families to reevaluate their home environment. Elements of the home that once seemed harmless could become potential dangers after the onset of certain FTD symptoms, including aggression, compulsive behaviors, or movement difficulties that could lead to falls. In this session, Sheila Lynch and Amy Sobrino of Memory Care Home Solutions will talk about the various modifications and environmental interventions that can help persons diagnosed to safely remain in their homes for as long as possible.
Maintaining Quality of Life by Deciding What’s Most Important – Elyse Everett, MD
Persons newly diagnosed and their families face many difficult decisions about their care goals. Initiating these discussions in FTD’s early stages gives the person diagnosed more autonomy in their future care decisions and provides guidance for health professionals. In this breakout session, Dr. Elyse Everette, a neurologist specializing in palliative care at Washington University, will discuss the importance of determining one’s personal quality-of-life goals in order to guide care planning.
In-Person & Virtual
Sharing Your Experiences to Advance FTD Science – Adrian Eissler; Susan Eissler; Nupur Ghoshal, MD, PhD; Sweatha Reddy; Deb Scharper; Terry Walter
People living with FTD and their loved ones are the authorities on how FTD impacts daily life, and their experience is extremely valuable in furthering the science of FTD. In this session, a panel of experts will explore ways in which you can advance our understanding of FTD and drive research towards a cure, all by sharing your own FTD experiences. The panel will discuss opportunities to get involved, including by enrolling in the FTD Disorders Registry or the ALLFTD natural-history study, and by sharing your story directly with the research community.
Responding to High-Risk Behavior in FTD – Jennifer Pilcher, PhD
No two instances of FTD are exactly alike; symptoms can vary greatly from person to person. Some who have been diagnosed may engage in risky behaviors – including hypersexuality and aggressive tendencies – that can be difficult for families to talk about, worsening the isolation that is too often part of the FTD journey. This session will outline some of the more difficult behaviors in FTD and highlight approaches to care aimed at reducing potential dangers and increasing safety for those in the home and the community.
Improving FTD Care in Rural and Underserved Communities – Andrea Denny, JD, MSSW
For those who do not live near a big city, obtaining an FTD diagnosis and accessing quality care can be prohibitively burdensome and expensive. In this panel discussion, moderated by Washington University social worker and researcher Andrea Denny, participants will discuss emerging and promising practices to improve FTD care in rural and underserved communities, as well as strategies that families living with FTD can use to advocate for their care needs.