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
- The Genetics of Dementia with a Focus on FTD by Kirk Wilhelmson, M.D., Ph.D., professor, department of genetics & neurology, UNC School of Medicine and The Big Picture of FTD Research: An Overview of Funding, New Collaborations and the Scoop on Patient and Family Participation by Sharon S. Denny, M.A., program director, AFTD
- Communications Strategies for Primary Progressive Aphasia (PPA) and FTD by Maura English Silverman, M.S., CCC/SLP, Triangle Aphasia Project, Unlimited
- Taking a Step Back: a Problem-Solving Approach to Behaviors by Melanie Bunn, M.S., RN, GNP, dementia training specialist, Alzheimers NC
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
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.
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.
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.
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.