Have you heard of FTD? By now most people have heard the terms Alzheimer’s and Dementia. And the two are often used interchangeably. The truth is Alzheimer’s Disease is only one of over 100 different types of dementia.
FTD may not be as common as Alzheimer’s disease. But it can be as devastating. In fact, because it is often misdiagnosed, it can be more devastating for the family.
“Knowing what we were really dealing with helped. At least now we could put together a plan. My sister June and I had never heard of FTD before. The first doctor said mom had Alzheimer’s Disease. It was devastating. But at least there were medications we could give that was supposed to help with the symptoms. Except that they didn’t! She got worse. The behavior was so bizarre. We did not know what to do or where to turn.”
So, What is FTD?
According to the Alzheimer’s Association FTD is described as:
Frontotemporal dementia (FTD) or frontotemporal degenerations refers to a group of disorders. And these disorders are caused by progressive nerve cell loss in the brain’s frontal lobes or temporal lobes. These are the areas behind your forehead or the regions behind your ears.
This disease was originally called Picks Disease. It was named after Arnold Pick, M.D., a physician who in 1892 first described a patient with distinct symptoms affecting language. FTD is also called frontotemporal disorders, frontotemporal degenerations, and frontal lobe disorders.
How is FTD the Same/Different from Alzheimer’s Disease?
- FTD often presents early. It is not uncommon for someone in their early 40’s to be diagnosed. In Alzheimer’s the symptoms tend to show up later in life.
- Memory Loss is usually common in the early stages with Alzheimer’s. With FTD memory loss may not show up until the later stages.
- Behavior and personality changes are seen in both diseases. The difference lies in when they show up. In Alzheimer’s these changes usually occur in the later stages. But in FTD these are often the first changes.
“Brad and I had been married for 20 years. Like any couple, we had our ups and downs. But we got along well. Brad was a solid guy. I mean you could always count on him. He volunteered in the community. He was responsible. Furthermore, he was an amazing Dad! And, we were both active in our church.
Then a series of incidents happened. He picked a fight with someone at work. And he actually punched the guy. It was so unlike him. He lost the job he had for the last 15 years. And he acted as if somehow it was my fault. I tried to get him y to go to marriage counseling with me but he refused.
So, we separated. I was so confused. Six months later he was arrested for getting into a bar brawl. When I bailed him out, he was indifferent and aloof? I knew that something serious was wrong. Somehow, I convinced him to go to a doctor. That’s when we discovered that Brad had FTD.” ~ Dawn
- Patients with Alzheimer’s Disease often wander and get lost. This is not a common occurrence with frontotemporal disorders.
- People with FTD will often have trouble making sense when they speak. And those with Alzheimer’s may simply forget words or names.
- Hallucinations and delusions are relatively common as Alzheimer’s progresses but relatively uncommon in FTD.
- Movement problems are also common in people with FTD. Exercise can keep the joints limber. And weighted walking aids—such as a walker with sandbags over the lower front rung—can help maintain balance.
What You Really Need To Know About FTD
As with many types of dementia, this disease may last a long time. Getting help early on will ensure that you are able to care for someone over time. Getting a proper diagnosis can also mean that you are able to get the right help. Find care staff, doctors, and therapists who are familiar with this disease. What works for the Alzheimer patient may not work here.
In fact, some medication given for Alzheimer’s Disease may actually cause more problems in someone with FTD. The following medications are not recommended for someone with FTD.
Aricept®
Exelon®
Razadyne®
Nameda®
Talk to your neurologist and pharmacist to see if there are other medications that should be avoided. Some over the counter medications may cause problems as well.
Who Can Help?
The first step is to get a diagnosis. If you suspect FTD talk to someone on the Alzheimer’s Association hotline. They may be able to direct you to a neurologist in your area who can test and diagnose.
Find out what resources are available in your area. Check with the Area Agency on Aging. They can help you to find resources.
Join a good dementia support group for caregivers.
You will need the support more than you can imagine. Plus, the people in these groups have a wealth of knowledge. They can point you in the right direction to find doctors, therapists and other resources that can help. You do not have to share your story unless you are comfortable doing so. Just attend and listen. When you are ready to share you can.
Take a Look at Memory Care Facilities.
Even if you think you will never place the one you love. You do not know what the future may bring. By gathering information, you will be prepared. You didn’t plan on this happening to your spouse. Likewise, something could happen to you.
At Sycamore Creek Ranch we are happy to have you tour our home. We are usually full so you may want to add your name to the waitlist. If you are not ready when we call, it’s okay. But if the time does come you will be prepared. And that will make a very difficult decision and a little bit easier.