In March 2007, my husband, Dave, 57, was officially diagnosed with frontotemporal dementia (FTD). I had never heard of FTD, much less a baby boomer with Alzheimer’s or any other related dementia. I thought it was only reserved for those people over 80, with wrinkled skin and bluish-white hair!
Frontotemporal is the second most common form of dementia, under 65, behind Alzheimer’s. Initially, FTD affects the frontal half (frontal and temporal lobes) of the brain, while Alzheimer’s begins in the back half, where most of our memory is stored.
Damage to Dave’s ‘frontal’ lobes, which are responsible for personality, judgment, and emotions, is the reason he withdraws, often with a ‘distant’ or blank look on his face. He has lost his initiative and much of his ability to carve birds, his favorite hobby for more than 35 years. Loud or high-pitched sounds, such as baby cries, sirens, or trucks changing gears on the road, irritate your brain and cause you to shiver with tears. These noises would be the equivalent of 100 nails scraping a blackboard. Dave has also developed rituals and routines, which are quite rigid. For example, Monday is “mowing” day regardless of the weather, Tuesday is “gym” day, Wednesday is “garbage dump” day (and it has to be a given dump), and so on. The frontal lobes help us solve problems and use our common sense. I have to admit that this is one of the hardest areas for me to be patient. Sometimes taking a deep breath or counting to 20 is not enough! Last night was a perfect example. Our young springer spaniel, who has poor bladder control, was excited when our neighbor came to the door and urinated in the hallway. Dave looked at the puddle and even stepped over it, not thinking of wiping it off with a towel. Meanwhile, our spaniel walked back through his little mess, leaving wet paw prints all over the house!
In addition to the changes in the frontal lobe, Dave’s two “temporal lobes” are shrinking and being replaced by fluid. It shows up as large, blackened areas on your CT scan. Since this area is responsible for understanding and recognizing words, faces and their meanings, reading shopping lists, instruction manuals, etc. they are a challenge. The saddest loss is that Dave does not recognize the people he has known for years, not even his first cousins and teachers, who were his colleagues for 25 years. When invited to a party or social gathering, Dave says very little due to his difficulty finding the right words. When he speaks, he will use many words to describe the one he cannot find, known as ‘circumlocution’.
The progression of dementia varies with each person, but is similar to the rate of Alzheimer’s: 5-8 years from the time of diagnosis. Currently, there are no cures or medications that delay FTD; they will only treat symptoms, such as depression or anxiety. Recently, research has shown that frontotemporal dementia has a genetic component; it has something to do with the production of tau protein and chromosome 17. There is genetic testing for our 2 adult children, but I still don’t have the inner strength to deal with it. Interestingly, chromosome 17 is the same for Parkinson’s, and it is the reason why 10% of FTD patients show related symptoms. The classic signs of Parkinson’s – intentional tremors in the hands and the pill rolling with the fingers – appeared in Dave over the past year. This is another reason you don’t spend a lot of time carving and painting your ducks, which require fine and precise hand coordination.
As more baby boomers reach their prime years (40, 50 and 60), you will see a significant increase in “younger” or early-onset dementia. Hopefully, brain research will not only find a cure for Alzheimer’s and related dementia, but more importantly, it will discover how we can maintain a healthy brain, so that we never have to experience this debilitating and progressive condition.
If you have any questions or comments, I’d love to hear from you.