Enriching a life with Dementia-part 2

 

In my last post I told you about my husband, Dave, being diagnosed 2 years ago with Frontotemporal Dementia (FTD)at age 57. This form of dementia is the 2nd most common one under the age of 65, yet there is little written about it. In fact it was difficult to find many people blogging about it.

In FTD, the frontal and temporal (side) lobes of the brain are affected initially. The frontal lobe is responsible for our personality, judgment and emotions. In Dave’s case, he has become withdrawn and often has a vacant or blank look on his face. He has lost his initiative to carve birds-his favourite hobby for over 35 years, and is highly sensitive to noise-he winces with tears when he hears higher pitched sounds like babies crying, sirens and even most cell phone tones. I have noticed that Dave has certain routines throughout the week, which are tough to change.  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. Dave’s problem-solving and common sense is becoming more limited and I can tell you that this area really tests my patience! A good example was last night when our young springer spaniel, who has poor bladder control, got excited and peed when a neighbour came to the front door. Dave looked at the puddle and even stepped over it, without thinking about getting a towel to wipe it up. Meanwhile, our spaniel walked through it and I could see her wet paw prints all over the house.

In addition to these frontal lobe changes, Dave has significant damage to his both of  his temporal lobes. It controls how he understands and recognizes words, faces and their meanings. That is why grocery lists and reading a novel is so difficult for him and why he doesn’t recognize many people-even if they were our neighbours for years, or cousins he has known since childhood. If we are in a group of people, Dave says very little because he has problems finding the right words and when he speaks, he will use many words to describe the word that he can’t find. That symptom is referred to as ‘circumlocution’.

As the dementia progresses-it varies for each person, but is similar to Alzheimer’s rate: 5-8 years from time of diagnosis-other symptoms begin to appear. Over the past year, Dave’s personal hygiene is becoming more of a problem. He would wear the same pants for 7 days straight and shower every 5 days, if  I didn’t remind him otherwise. He is losing empathy and doesn’t understand why I would insist that he showers before coming to bed. His leg muscles are weaker and he is becoming shorter of breath, even though he exercises every day.

 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 some of the same 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 one of the reason why he has lost interest in his duck carving and painting, which requires fine and accurate detailing.

I think I have covered most of the general information that I have read and hopefully, you have a better idea of why people with dementia speak and act the way they do . In my following posts, I want to start sharing the lessons and tips that I have found to enrich our life-despite dementia.

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