Association for Frontotemporal Dementias

Past Caregiver Conferences

Each year the number of conferences dedicated to educating and supporting caregivers increases providing hundreds of families and professionals with access to cutting edge information.   Whenever possible, AFTD will present materials from these conferences here for those who were unable to attend.

2013 Conferences

AFTD hosted its Education Conference and Annual Meeting in Salt Lake City, UT on April 12, 2013.  Approximately 203 people from across the country attended; Dr. Norman Foster of the University of Utah gave the clinical address entitled FTD Overview, Trends and Developement [1].  Darlene Ryan, former caregiver and AFTD board member, gave the keynote address: Reflections from a Survivor.  Click here for the conference program [2].  Click here for the slides on the clinical trials presentation [3].

2012 Conferences

AFTD hosted its Education Conference and Annual Meeting in Atlanta, GA on April 27, 2012.  Approximately 180 people from across the country and Canada attended; Dr. William Hu of Emory University gave the clinical address entitled FTD: 2012: Progress and Challenges.  Tim Langmaid, Sr. Managing Editor of CNN Medical, gave the keynote address: It’s More Than a Relationship.  For the conference program and breakout materials, click here. [4]  To listen to the audio of Dr. Hu’s clinical address, click here [5].

AFTD co-hosted the 2nd Annual FTD Caregiver Education Conference in Raleigh, NC with Alzheimers North Carolina, Cope Eldercare and UNC Department of Neurology on July 25.

Morning Presentation:

FTD Genetics: for Patients and Families [6] - Kirk Wilhemlsen, MD, PhD, University of North Carolina

Breakout Sessions:

Hospice and Pallative Care for Frontotemporal Dementia [7] - Debra Blue, MD, Medical Director, Hospice of Wake County

Approaches to Behaviors – More than Medications [8] - Melanie Bunn, MS, RN, GNP, Dementia Training Specialist, Alzheimers NC

Practical Communication Strategies for Individuals with PPA/FTD [9] - Kelly J. O’Brien, MD, CCC-SLP, Speech-Language Pathologist Clinical Supervisor, Speech Pathology & Audiology, UNC Hospitals

Partners in FTD Care [10] - Lisa P. Gwyther, MSW, LCSW, Director, Duke Aging Center Family Support Program and Sharon S. Denny, MS, Program Director, AFTD

Empowering Your Caregiving: Learning to Advocate for Your Loved One [11] - Amy Smith, MS, LRT, CTRS, Divisional Memory Care Specialist, Brookdale Senior Living

Afternoon Presentation:

FTD: Improving Outcomes and Outreach [12] - Daniel Kaufer, MD, Chief of Cognitive and Behavioral Neurology & Director, UNC Memory Disorders Clinic, University of NC-Chapel Hill

2011 Conferences

AFTD co-hosted the 1st Annual FTD Caregiver Education 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 [13] by Alice Watkins, executive director, Alzheimers North Carolina, Inc. and Sharon S. Denny, M.A., program director, AFTD

Frontotemporal Degeneration: Translating Research into Practice [14] 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? [19] by Melanie Bunn, M.S., RN, GNP

AFTD hosted its Annual Meeting and Caregiver Conference in Boston, MA on June 10.  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 [20]

Keynote Address

Dr. Bradford Dickerson – Keynote Address [21]: 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 [22]

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 [23]

Early Onset Dementia – Zeina Chemali, M.D., MPH [24]

Genetics of FTD: Should You Worry? – Susan Dickinson, M.S [25].

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 [26]

Navigating Through a Day – Judith Pare, Ph.D. (c), M.S.N., RN [27]

Children’s Responses to Anticipated Death [28]

Families with Children and Teens [29]

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 [30]

2010 Conferences

Webinar with Dr. Brad Boeve – April 29, 2010
AFTD and CurePSP co-sponsored a web-based training with neurologist Brad Boeve, MD, chair of AFTD’s Medical Advisory Council. He addressed “Cognitive and Behavioral Issues in PSP, CBD, FTD and PPA.” The Webinar remains available through the CurePSP [31]website or download Dr. Boeve’s slides. [32]

Fort Worth Caregiver Conference, Fort Worth, Texas – May 21, 2010
The Fort Worth caregiver support group and the University of North Texas Health Science Center presented the first FTD educational conference in the U.S. South Central region. A copy of the conference agenda can be found here [33]. Slides from many of the conference presenters are also available including those of Anne Lipton, MD [34], who provided an overview of FTD, Barbara Hardy, RN [35], who spoke about the role of care facilities, Paul Higgins, MEd, and Elizabeth Taylor, PhD [36], who discussed strategies for helping teens and children cope, Doris Svetlik, RN [37], who discussed FTD symptom management, AFTD Founder and AFTD Executive Director Helen-Ann Comstock and Susan Dickinson, MS [38], respectively, who provided an overview of AFTD, its growth and recent initiatives, and AFTD Founding Member and Keynote Speaker Lisa Radin [39], who delivered Strength for the Journey – Empowering Care Partners.

7th International Conference on FTD, Indianapolis, Ind. – October 6-8, 2010
The first day of the 7th International Conference on Frontotemporal Dementias, held October 6-8 in Indianapolis, featured a program for caregivers on FTD diagnosis, medical management, legal and financial issues, and support services. Caregiver program presenters (several listed here with links to their presentation slides) included: AFTD Medical Advisory Council (MAC) Member M.-Marsel Mesulam, M.D. [40], of Northwestern University, who presented A Guided Tour of Frontal and Temporal Lobes; MAC Member Ian R.A. Mackenzie, M.D. [41], of the University of British Columbia, who presented Molecular Genetics and Neuropathology of Frontotemporal Dementia; Kimberly A. Quaid, Ph.D., of Indiana University, who presented Genetic Counseling for Frontotemporal Dementias; MAC Member Tiffany W. Chow, M.D. [42], of the University of Toronto, who presented What Are the Different Initial Presentations of Frontotemporal Dementia?; MAC Chair Bradley F. Boeve, M.D. [43], of the Mayo Clinic, who presented FTD and PPA: The Journey to Diagnosis; Greg Jicha, M.D. Ph.D. [44], of the University of Kentucky, who presented Medical Management of Frontotemporal Dementia; Arne Brun, M.D., Ph.D., of Lund University, Sweden, who presented The Hope for Therapies: Historical Aspects; MAC Member Michael Hutton, Ph.D. [45], of Eli Lilly & Co., UK, who presented Present, Future: The Hope for Therapies;  Pelagie M. Beeson, Ph.D., of the University of Arizona, who presented Managing Language Symptoms; Clarissa Rentz, of the Alzheimer’s Association of Greater Cincinatti, who presented Managing Difficult Behavioral Symptoms Associated with FTD; attorney Claire E. Lewis [46], who presented Planning for Incapacity; Darby Morhardt, M.S.W., L.C.S.W. [47], of Northwestern University, who presented Accessing Community Based and Long Term Care Services; and  AFTD Executive Director Susan L-J Dickinson, M.S., and Program Director Sharon S. Denny, M.A. [48], who presented AFTD: Making Connections and Building Resources.

The 7th International Conference on FTD was led by MAC Vice Chair Bernardino Ghetti, M.D., of Indiana University, who served as conference president. The conference included in-depth presentations and discussions on emerging discoveries in the science and medicine of FTD from researchers from countries all over the world and as far away as Japan, Australia, Sweden and The Netherlands.

2009 Conferences

University of Pennsylvania, Philadelphia, Penn.  – July 10, 2009
In this, Penn’s 3rd bi-annual Caregiver Conference, experts in the field of FTD addressed medical causes and treatments as well as management of patient needs ,and legal and financial issues.  Sylvia Mackey, wife of noted former football player with features of FTD, was the keynote speaker.

Northwestern University, Chicago, Illinois  –  August 10, 2009
Tiffany Chow, MD, Assistant Professor of Neurology and Psychiatry, University of Toronto, was the featured keynote speaker during this second annual FTD and PPA Caregiver and Professional Education Conference.  Sandra Weintraub, Ph.D. presented information on current research at Northwestern’s CNADC.  The day also included facilitated education and support sessions.  Conference information is available through the Northwestern University’s Feinberg School of Medicine website here [49].

Boston Caregiver Conference, Boston, Massachusetts – October 29, 2009
This  was the first caregiver conference held in the Boston area, hosted by Massachusetts General Hospital FTD Unit and the Association for Frontotemporal Degeneration.  Topics included genetics, communication in PPA/FTD, managing difficult behaviors, and managing caregiving.  More information about this and future conferences can be obtained by emailing ftd.boston@gmail.com. A copy of the conference agenda can be found here [50].

New York City Area FTD Consortium, New York, New York – November 20, 2009
The Consortium is a group of nine medical centers whose goal is to improve the diagnosis and clinical care for FTD and related diseases, as well as to promote clinical and laboratory research on FTD. This day-long conference featured general sessions on genetics, medical management and dealing with FTD behavior, as well as breakout sessions on various aspects of care management.  

2007 Conferences

University of Pennsylvania, Philadelphia, Penn – June 22, 2007
The second bi-annual FTD Caregiver Conference at Penn drew over 230 caregivers interested in hearing the most current information on diagnosis, care and treatment of frontemporal degeneration.  John Trojanowski, MD, University of Pennsylvania delivered an optimistic review of progress in research that will advance work on new drugs and treatments.  

2005 Conferences

University of Pennsylvania, Philadelphia, Penn – November 11, 2005
More than 200 caregivers and 40 health professionals from across the U.S., Canada and Scotland attended the first FTD Caregiver Conference at Penn.  Topics presented during the conference addressed the broad array of medical, care management and legal and financial issues FTD caregivers face daily.  Dr. Dan Gottlieb, a family therapist and media personality was the keynote speaker.