2011 Conferences

2011 Conferences

1st Annual FTD Caregiver Education Conference: AFTD co-hosted this conference in Raleigh, NC with Alzheimers North Carolina, Cope Eldercare and UNC Department of Neurology on July 12.  Three breakout sessions were available to caregivers.

Welcome and Introductions by Alice Watkins, executive director, Alzheimers North Carolina, Inc. and Sharon S. Denny, M.A., program director, AFTD

Frontotemporal Degeneration: Translating Research into Practice by Daniel Kaufer, M.D., chief of cognitive and behavioral neurology & director of the UNC Memory Disorders Clinic at UNC-Chapel Hill, director of the Carolina Alzheimers Network

Breakout Sessions

What Do You Want Your Caregiving Journey to Look Like? by Melanie Bunn, M.S., RN, GNP


AFTD’s Annual Meeting and Caregiver Conference in Boston, MA:  Held on June 10, 2011, approximately 170 people attended; Dr. Bradford Dickerson gave the keynote address: Frontotemporal Degeneration: New Tools for Early Diagnosis and Monitoring Set the Stage for Treatment Trials.  AFTD also unveiled its film It Is What It Is, a documentary that chronicles the lives of four families affected by FTD.

Opening Plenary Session

Opening Address by Elinor Lipman: The Beginning, the Middle, the End: An FTD Wife’s Story

AFTD Highlights

AFTD Welcome/Highlights by Beth Walter & Susan Dickinson

Keynote Address

Dr. Bradford Dickerson – Keynote Address: Frontotemporal Degeneration: New Tools for Early Diagnosis and Monitoring Set the Stage for Treatment Trials

In-depth Breakout Sessions

Sessions were designed for caregivers based on their relationship to the person diagnosed.  Participants selected the breakout that best fit their situation.

Spouse/Partner of Person Diagnosed by Paul Raia, Ph.D.; Nicole McGurin, M.S. with AFTD Regional Coordinator Kathy Ullrich For people losing a spouse or partner to FTD; not intended for the patient-caregiver couple.  Explore the loss of companionship and intimacy, taking on new roles in the relationship, etc.  Includes panel discusssion.

Living and Transforming with Loss and Grief

Adult Children of Person Diagnosed by Zeina Chemali, M.D.; Elaine Silverio, RN; Stacey Schamber, LCSW with Matt Sharp, M.S.S.,  AFTD For people in their 20s – 40s with a diagnosed parent. Explore balancing independence with the parent’s needs, long-distance caregiving, changing family dynamics, and the heritability of FTD.

Adult Children of Parents with FTD – Stacey Schambler, LICSW

Early Onset Dementia – Zeina Chemali, M.D., MPH

Genetics of FTD: Should You Worry? – Susan Dickinson, M.S.

Parenting while Caring for a Diagnosed Spouse by Judy Pare, RN; Sharon Denny, M.A. and Aly Negreira, B.A. For people with children and teens in the home. Address needing to do it all while being emotionally present for everyone. Explore how to talk with your children, support their resilience, and care for yourself.

Talking with Children and Teens

Navigating Through a Day – Judith Pare, Ph.D. (c), M.S.N., RN

Children’s Responses to Anticipated Death

Families with Children and Teens

Extended Family and Friends of Person Diagnosed by Brad Dickerson, M.D.; Daisy Sapolsky, CCC-SLP and Emily Levy, M.B.A. Understand and value different roles in the care of both patient and caregiver. Facilitators will cover a broad range of topics, making this the best session for social workers and other professional caregivers.

Additional Resources

FTD Resources