Last week I wrote a post for World Alzheimer’s Awareness Day, not knowing that an awareness day (or rather, an awareness week) existed for FTD. FTD stands for frontotemporal lobe degeneration (or dementia), which is the category which Mom’s dementia falls under. The Association for Frontotemporal Degeneration (AFTD) is challenging all of those affected to make a social media post, sharing our stories and raising awareness along with a picture of our loved one, with the hashtag #ThinkFTD. You know me-awareness is my middle name!
For those of you who have been following my blog for the past 5 years, you probably have a good understanding of what this disease looks like. If you are new to my blog, you can view my archived posts, dating back to my mom’s diagnosis in 2012. In a nutshell, Alzheimer’s is not the same as FTD! Alzheimer’s accounts for over 50% of all dementias, while FTD makes up roughly 20% of all dementia cases. Semantic dementia (Mom’s variation) is one of the rarest forms of FTD.
The warning signs of FTD include personality and behavior changes, trouble finding words, lack of apathy, and obsessive behaviors…just to name a few. It is difficult to diagnose and is oftentimes misdiagnosed as depression or other personality disorders. In fact, the average time it takes to find a diagnosis is 4 years. It took us over 2 years and 6 specialists to finally get a diagnosis, after the doctors in our medical clinic assured us that “it isn’t Alzheimer’s and it isn’t dementia.” Knowing what we know now, we can see that it all started about 5 years before her diagnosis in 2012, at age 50. The doctors were only right about one thing: it wasn’t Alzheimer’s.
My dad and I were just talking last night about our road to diagnosis. We were thinking back on all of the odd things that Mom said and did in the years leading up to her diagnosis. How did we not know? In all fairness, we did know that something was wrong, but dementia wasn’t on our radar; she was way too young. Had I known anything about FTD at that time, we would have known what we were dealing with much sooner and saved ourselves years of frustration and hurt feelings. But how could we have known?
Please take a minute to share this post. You never know what friends you might have who are going through changes with a parent or loved one and are lost as to what is going on. Help raise awareness!
To learn more about FTD, please visit www.theaftd.org
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