Insights on Stigma, the Persons with FTD Advisory Council

Despite growing efforts to educate the public about dementia, the stigma surrounding an FTD diagnosis still runs deep. In this session, members of AFTD’s Persons with FTD Advisory Council will explain how that stigma affects their lives, their personal relationships, and the isolation it brings. Attendees will gain a greater appreciation of the first-person experience of the stigma associated with FTD.

[robinberkley]

Thank you so very much for sharing this information. I praise all of those on the council for their courage.

[tomemberley]

Thanks to all of you for sharing your thoughts and experiences. Thank you for educating us on what you experience daily and how we can all become better listeners and minimize the stigma associated with FTD.

@KevinRhodes, thank you for continuing to educate me and for all that you do.

[sandiwong]

Thank you all for sharing your stories. I agree with Bob, the word “dementia” is misleading. People “think” they know what dementia means, i.e. forgetfulness, child-like, unable to answer questions, etc, and they make assumptions about what you can or cannot do. I wish they understood that brain cells are dying, and its a terminal disease.