Making Sense Out of Baby Boomer’s Frontotemporal Dementia

In March 2007, my husband, Dave, 57, was officially diagnosed with frontotemporal dementia (FTD). I had never heard of FTD, let alone a baby boomer having Alzheimer’s, or any other related dementia. I thought it was only reserved for those people over 80–with crinkly skin and blue-white hair!

Frontotemporal is the second most common form of dementia, under the age of 65–behind Alzheimer’s. 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 is withdrawing–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 favourite hobby for over 35 years. Loud or high-pitched sounds, such as babies crying, sirens, or trucks shifting gears on the highway, irritate his brain, causing him to wince with tears. These noises would be the equivalent of 100 fingernails scraping on a chalkboard. Dave has also developed rituals and routines, which are quite rigid. For instance, Monday is ‘cutting the lawn’ day–regardless of the weather, Tuesday is ‘gym’ day, Wednesday is a ‘garbage dump’ day (and it has to be a certain dump) and so on. The frontal lobes helps us to problem solve, and to use our common sense. I have to admit, this is one of the toughest areas for me to be patient. Sometimes, taking a deep breath, or counting to 20, doesn’t cut it! Last night was a perfect example. Our young springer spaniel, which has poor bladder control, got excited when our neighbour came to the door, and she peed in the foyer. Dave looked at the puddle, and even stepped over it, without thinking about wiping it up with a towel. Meanwhile, our spaniel walked back through her little mess, leaving wet paw prints all over the house!

In addition to the frontal lobe changes, both of Dave’s ‘temporal lobes’ are shrinking, and being replaced with fluid. It shows up as large, blackened areas on his CT scan. Since this area is responsible for understanding and recognizing words, faces, and their meanings, reading grocery lists, instruction manuals etc. are a challenge. The saddest loss is that Dave doesn’t recognize people he has known for years–even first cousins, and teachers, who were his colleagues for 25 years. When we are invited to a party, or any social gathering, Dave says very little because of his difficulty finding the right words. When he does speak, he will use many words to describe the one that he can’t find–known as ‘circumlocution’.

The progression for dementia varies with each person, but is similar to the Alzheimer’s rate: 5-8 years from time of diagnosis. Presently, there are no cures or medications, which will slow down 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 tau protein production and chromosome 17. There is genetic testing for our 2 grown children, but I don’t have the inner strength to deal with that yet. Interestingly, chromosome 17 is the same one for Parkinson, and the reason why 10% of patients with FTD, show related symptoms. The classic signs of Parkinson–intention hand tremors and pill rolling with the fingers–showed up in Dave within the past year. This is another reason why he doesn’t spend much time carving and painting his ducks, which require fine and accurate hand coordination.

As more baby boomers reach their prime years–40’s, 50’s and 60’s–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 importantly, 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 would love to hear from you.

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