FAQ’s
What is FTD? How Common is it? And, Is it Treatable?
FTD, or Frontotemporal Dementia, is considered a “rare” neurological disorder by the medical community and there is currently no cure or known treatment. FTD differs from Alzheimer’s disease and other dementias because of it’s early onset (typically around age 50) and the presenting symptoms. FTD attacks the frontal and temporal lobes of the brain which are know to house ones social skills, personality, behavior, processing and language/visual perception. FTD makes up about 10-20% of all recorded dementia cases.
I Think my Loved One has FTD. What Does Diagnosis Entail?
Alot of patience, staying off google, and tons of deep breath. Kidding! (kind of!) Something that is often referred to on the Remember Me Podcast is something along the lines of “well, my loved one was diagnosed in 2020 but the symptoms started about 3 years prior.”
The road to diagnosis is often treacherous.
If you suspect your loved one has FTD, make an appointment with their primary care physician to discuss your concern. You will most likely REALLY need to advocate and push for a referral to a neurologist - don’t give up. That’s where the magic happens.
Once you have your referral, make an appointment and bring your data! Push for the MRI or PET scan. And I mean, PUSH!
Your loved one will typically also have a blood draw and participate in a battery of neuro psych exams. If your loved one is amicable to doing so, a spinal tap is also a good move.
What is the Life Expectancy of Someone with FTD?
It definitely varies, however the average life expectancy typically falls between 7-13 years after onset of symptoms
My Mom has FTD, Does that Mean I’ll get it too?
Loaded question. There is definitely a chance but it’s not 100%. So here’s the thing. There is a genetic component to this disease, however there is only a 50% chance that if your parent develops FTD than you will too. FTD also has sporadic cases (meaning no family history of this disease) that can happen to anyone. Genetics are a really difficult portion of the disease. For more information about genetics, click here
If there is a question that you have that isn’t asked here, click the button below to email us and we will answer!
(If you are wondering something, then it’s likely someone else is wondering the same thing. We seriously encourage you to ask if something isn’t addressed above or below!)
Also..Keep scrolling!
We Have FTD in our Family and I want to Participate in Research, where do I start?
Oh, good! Without research there are no advancements So kudos to you. We first suggest listening to our mini-series all about participating the ALLFTD study (sites all around the US) so you know exactly what it entails. Then, if you’d like to sign up for that specific study, you can click here to be directed to their website. If you’re interested in learning about other research possibilities, click here to be taken to the FTD registry “Find a Study” page.
Are There Stages of FTD?
We like to categorize them as “newly diagnosed” … “in the thick of it” and … “on the other side,” however there are no concrete stages to this disease.
Newly Diagnosed: behavior has changed, family and friends notice a shift, medical community is involved,
In the thick of it: Behaviors are very present, speech is limited, gait and mobility are an issue. This is when you are in the trenches!
On the other side: the person living with FTD has passed.
FTD is progressive (that means it’ll get worse as it evolves) and as the disease advances more care and support will need to be put in place. Typically, a person will ultimately need full time care, be wheelchair bound and need assistance in ADL (activities of daily living).
What is a brain donation? Is it the same as an autopsy?
Brain donation and autopsy differ a bit, but if your family decides to go the route of donation - there will be an autopsy report given with a confirmed diagnosis. The brain tissue will then be preserved and used to advance research. Rachael wrote a blog on this - it can be found here. This decision is very personal and it’s to be made by the family based upon their comfort level.
Is Caregiver Burnout a Real Thing?
Ummm, YES. And it’s unavoidable if you push yourself too hard. We feel like a broken record and we know we’ve said it before, but please - please be aware of your personal limits, please ask for help. And please reach out to us. We are here.