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Over the past week, I have been sharing a lot of information about FTD, which stands for Frontotemporal Degeneration (also known as frontotemporal dementia), on my social media outlets. This week is FTD Awareness Week. So what is FTD and why am I sharing about it?
Taken from the AFTD website: FTD “represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.”
FTD is the most common form of dementia in people under the age of 60. The typical age of onset is between 45-64 but I have seen people in my support groups in their 30’s and as young as 28 with FTD. It affects the frontotemporal regions of the brain, which controls behaviors and language. It is a horrible disease that robs you of your whole being and results in loss of life.
Why am I talking about this? Many of you reading this may already know that I lost my mom to this horrible disease a few years ago. She was diagnosed at age 50 (exhibiting symptoms as early as 46) and passed away 5 1/2 years later. If you want to know more about her journey and what this disease looks like, you can watch the short documentary on the right side bar on this site, or you can head over and read my blog, Dementia Diaries.
Today, I writing this post to answer some of the questions that I receive frequently (and have gotten through. comments and private messages on my posts) and to leave you with some resources if you suspect FTD in a loved one.
Frequently Asked Questions
Is FTD the same as Alzheimers? What is the difference between dementia and Alzheimers or FTD?
No, it is not the same. Different parts of the brain are affected. You can click here to read about the differences between Alzheimer’s and FTD, as well as the different variants of FTD (yes, there are different variations! My mom had the semantic variant).
As far as that second question, dementia is an “umbrella” term used to describe a set of symptoms. There are several forms of dementia (or diagnoses for these symptoms); Alzheimers is the most common and FTD is the least common, accounting for only 10-15% of all dementias. Here’s a good visual for you:
What are the early signs of FTD?
Unlike other dementias (which affect memory first), the first signs in FTD are personality and behavioral changes. Most people are misdiagnosed with other mental illnesses first: depression, anxiety, bipolar. They tend to lose their “filter” and might say things in conversation that are very bizarre or out of character. Apathy is another common symptom; they don’t behave appropriately in certain situations. You may also start to notice problems with language and comprehension. Loss of words becomes common.
Is dementia a terminal illness and if so, how do they die of this disease?
The hard answer is yes, it is terminal. As a person’s brain shuts down, so does their body and bodily functions. Eventually they forget how to swallow. Most people either pass away from either aspiration (choking and getting particles in the lungs), which leads to pneumonia, or they quit eating and drinking (which was the case with my mom). Even though the death is marked as pneumonia or “natural causes” (that last one boils my blood…there’s nothing natural about it!) it is the disease that results in these end of life scenarios.
How long can a person live with FTD?
The average life span is 7-13 years after the onset of symptoms. Keep in mind that on average, it takes 2 1/2 years to get the diagnosis because most doctors are not well versed with FTD and misdiagnose it in the beginning.
Is FTD genetic?
Some forms of FTD are genetic and can be handed down to one’s children. There are genetic tests that can be done to determine if you have the gene. So far, they don’t think my mom’s variant is passed down (though it is a genetic defect), but every time a word slips my brain I am worrying if I might share the same fate 🙁
What should I do if I suspect I, or my loved-one, has FTD?
You should always start with your primary care doctor. Ask for a referral to neurology with either a CT scan or an MRI. FTD is very tricky to diagnose. There are different cognitive tests than the usual dementia tests that doctors give and a person with FTD will probably pass the standard tests with no problem. The scans should give some clues, but even with the scans, doctors may dismiss it as dementia. My mom’s CT scan showed shrinkage in the frontotemporal lobes, yet her neurologist said “it’s not Alzheimer’s and it’s not dementia”, and then he sent them on their way with no answers. (by the way, this neurologist was esteemed the “top neurologist” in our area. He was cocky and rude and obviously missed the mark by a longshot). My dad continued the fight. She saw another neurologist, a psychiatrist, and a couple other specialists, all of which passed her off as “fine” and said she suffered from anxiety and depression. If you suspect it’s more than that, KEEP FIGHTING. You have to be your own advocate. Ask to be seen by experts, people who specialize in neurology; go to a university medical clininc. In our case, my dad took her to UCLA. He just called the insurance company and told them he was taking her and they were paying for it. If you aren’t sure where to go in your area, ask around or do a google search for best neurology medical centers.
What resources do you have for FTD?
The two best places to get resources and help for FTD are The AFTD (Association for Frontotemporal Degeneration) and The Alzheimer’s Association. Even though their biggest focus is Alzheimer’s, the Alzheimer’s Association has a lot of resources and can tell you what dementia help is available in your community. The AFTD can help you specifically to understand and find resources for FTD.
I did a lot of research and reading about this disease through the internet and through books. I can’t recommend this book enough. If you have a loved one with any kind of dementia, this book is a MUST READ. It was the first book I picked up and it really prepared me for the road ahead. It was an easy read (not loaded with medical terms that you can’t understand) and tells you what you need to do, every step of the way. Like I said, every dementia caregiver and family member should read this book!!
I also found this book to be helpful. It shares stories of people with FTD to help you understand what is happening in the brain and how to respond to your loved one. It was a good read.
Here are some other books that I’ve seen recommended on support groups. I haven’t read all of them.
Speaking of support groups, I HIGHLY recommend a caregiving support group. Friends mean well and can be great therapy for you, but nobody really knows what you are going through unless they’ve been through it. Networking with others in your same situation helps you know what to expect, it helps to give you ideas when you feel unsure of how to handle a given situation, and it’s just a great place to vent or grieve or whatever you need to do. You can ask your doctor for a referral to one or contact the Alzheimer’s Association, or contact your areas Office On Aging. All places should have referrals for you. I wanted groups that were specific to dementia caregiving and frontotemporal dementia, which was pretty much impossible to find where I live (FTD groups). So, I joined some support groups online on Facebook and they were invaluable to me. I cannot recommend them enough. A couple of good ones to look into are: The Memory People, The Association For Frontotemporal Degeneration (AFTD), Dementia: The Journey Ahead (this is the support group run by the author of the book I recommended), Alzheimer’s and Dementia Support. Those are just a few of the dementia support groups I joined, but there are more and some are specific to which variant you are dealing with. Just enter what you are looking for in the search bar and you’ll find some great groups. There is also an AFTD support group for younger caregivers, like young adult age. That’s a great group for people are raising young families while also caring for a parent with FTD.
One last word of advice to caregivers of a loved one with FTD: make sure to take care of yourself! I can’t emphasize this enough! Caregiver burnout is very real. It is important to take care of yourself. If you are an outsider and know of a friend or family member who is dealing with dementia, reach out to them. See if they are okay; chances are, they aren’t. There may be good days, but there are a lot of bad days and it’s emotionally (and physically) overwhelming. Do whatever is in your power to be a good friend. The worst feeling is feeling like people have forgotten about you and don’t care. Letting people know you care means the world!
I hope this post helped you and answered some of the questions you might have about FTD. As always, feel free to reach out to me if you need support. If you found this post helpful, please share it!
