In March 2007, my husband, Dave, age 57, was officially diagnosed with Frontotemporal Dementia (FTD). He had never heard of FTD, let alone a baby boomer having Alzheimer’s or any related dementia. I thought he was only reserved for those people over the age of 80, with wrinkled skin and blue-white hair!
Frontotemporal is the second most common form of dementia, below the age of 65, behind Alzheimer’s disease. Initially, FTD affects the front half (frontal and temporal lobes) of the brain, while Alzheimer’s starts 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to Dave’s ‘frontal’ lobes, which are responsible for personality, judgment and emotions, is the reason he becomes withdrawn, often with a ‘far away’ or vacant look on his face.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 crying babies, sirens, or trucks changing gears on the highway, irritate his brain and cause him to shudder with tears. These noises would be the equivalent of 100 fingernails scraping a blackboard. Dave has also developed rituals and routines, which are pretty rigid. For example, Monday is ‘mow the lawn’ day, regardless of the weather, Tuesday is ‘gym’ day, Wednesday is ‘dump’ day (and it has to be a certain 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 with. Sometimes taking a deep breath or counting to 20 isn’t enough! Last night was a perfect example. Our young springer spaniel, who has poor bladder control, was excited when our neighbor knocked on the door and urinated in the hall. Dave looked at the puddle and even stepped over it, not thinking of wiping it up with a towel. Meanwhile, our spaniel walked back through his little mess, leaving wet paw prints all over the house!
In addition to the frontal lobe changes, Dave’s two “temporal lobes” are shrinking and being replaced by fluid. It shows up as large, blackened areas on the CT scan of him. 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 doesn’t recognize people he’s known for years, even his first cousins and teachers, who were his colleagues for 25 years. When invited to a party, or any social gathering, Dave speaks very little due to his difficulty finding the right words. When he talks, he uses many words to describe the one he can’t 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 slow down FTD; they will only treat the 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 are genetic tests 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 the reason why 10% of FTD patients show related symptoms. The classic signs of Parkinson’s—intentional hand tremors and pills rolling through fingers—appeared in Dave within the past year. This is another reason why he does not spend a lot of time carving and painting his ducks, which requires fine and precise hand coordination.
As more baby boomers reach their prime years (40s, 50s and 60s), 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 just as important, 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.
