The Loneliness of Frontotemporal Dementia – Up News Info

A common theme emerged, partners became dependent, adults became like permanent toddlers. I learned about adult teething toys. One woman complained that her husband, who was obsessed with putting things in his mouth, could chew the toy through in a day. He broke a tooth on a rock, she told us.

Sarcasm took over the conversation when someone mentioned social media. People have admitted they get jealous looking at photos of “normal” couples on cruises and on the golf course. “Can you really be that happy?” someone asked. Many in the group are experiencing an extreme case of ’till death do us part’. You are alone but connected.

Today there is new hope for people with Karger’s disease. “About a quarter of frontotemporal dementia cases are genetic,” said Dr. Grossman, who directs the Frontotemporal Dementia Center at the University of Pennsylvania. Unlike Alzheimer’s disease, in frontotemporal dementia we often know which gene causes the disease and which toxic molecule is accumulating in the brain. “It allows us to develop rational treatments,” said Dr. Grossman.

This summer, biotech company Alector announced initial results from a drug given to people with frontotemporal dementia, which is caused by mutations in a gene called progranulin.. People with the mutated gene have abnormally low levels of progranulin protein, but those who were given the drug had levels rise to a normal range. Two other studies are ongoing for people with another genetic mutation that causes amyotrophic lateral sclerosis (ALS) but can also cause frontotemporal dementia. The three studies appear to confirm an idea that has been brewing in the broader neurological community for several years: Targeted molecular therapies could be the future of care for people with dementia. Some neurologists question whether dementia should be treated like cancer.

“Because frontotemporal dementia often runs in families, we can get people into a study before they show symptoms,” said Dr. Grossman. “By sequencing genes from a blood sample, we know which family members are likely to get the disease. If we can slow these people’s progression, it’s practically a cure.

But science came too late for Mr. Karger. His symptoms are too severe for ongoing clinical trials and he does not have any of the mutations being studied at this stage. For Ms. Karger, most days feel like a dress rehearsal for widowhood.

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