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  • Rebekah Wilson, MSW

2016 AFTD Education Conference “Reflect, Renew and Explore”

Approximately 50.000 – 60,000 Americans are thought to be living with a rare form of dementia known as Frontotemporal Degeneration (FTD) or commonly called Frontotemporal Dementia. A disease process which starts in the frontal or temporal lobes of the brain causes initial symptoms in language and behavioral symptoms due to the functions of the areas of the brain first impacted in FTD. Unlike Alzheimer’s disease, which begins in the hippocampal region of the brain, memory is often preserved for individuals displaying symptoms of FTD. Additionally, the onset of FTD symptoms typically occurs in an individual’s 50s and 60s which is much younger than the typical age of onset in Alzheimer’s. With the unique age of impact and difference in initial symptoms (which often causes embarrassment and shame due to the nature of behavioral symptoms), individuals and families impacted by FTD often relay that others don’t understand their unique set of circumstances. They comment that when most people hear “dementia” or diseases impacting the brain, they immediately think of Alzheimer’s disease (the most common form of dementia) and assume that they know about FTD since they may have known individuals impacted by the memory and thinking challenges associated with Alzheimer’s disease.

With FTD being considerably less common than Alzheimer’s disease, those caring for individuals with FTD often feel misunderstood and isolated in their journey. That is what makes support groups and educational programs geared specifically toward FTD so special – it is the first time that many care partners feel that they are NOT alone in this journey. Many caregivers finally get a sense that there are indeed others who understand the path they are walking with their loved one. They feel a hint of excitement of having a community, even if it’s not a community they would have wished to be a part of prior to their loved one’s diagnosis of FTD.

Last Friday, May 13th, the Association for Frontotemporal Degeneration held their 2016 Annual Meeting and Educational Conference in Minneapolis, MN. There were informative presentations among the day’s program including an Overview of FTD Disorders, Research Advances, Impact on Family, a discussion on Young Families, and Practical Tools for Managing Stress. Additionally, there were smaller, interactive afternoon breakout sessions on the following topics: Movement Disorders, Language Disorders, Behavior Disorders, Residential and Facility Care, Comfort Care and End of Life Considerations, and a session for Persons Diagnosed, titled “Supporting Each Other”. A lot of new information was available for conference participants, and many took copious notes during the presentations. However, the most moving part of the day for many was to see over 300 people gathered from the United States and Canada to connect around the topic of FTD. The day began and ended with brief testimonials of her journey with FTD by Susan Suchan, who is living with Primary Progressive Aphasia, a subtype of FTD. There were few dry eyes in the room as the audience witnessed Susan’s courage and commitment to stand in front of this huge conference hall and (despite challenges with language) share her story.

If you or someone you know is impacted by FTD, please contact the Association for Frontotemporal Degeneration ( or contact me @ 901-581-2204.

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