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The cruelest disease you’ve never heard of: Frontotemporal Dementia – 60 Minutes – CBS News

The cruelest disease you’ve never heard of: Frontotemporal Dementia

60 Minutes reports on a disease that a leading researcher says “robs us of our very essence; of our humanity.” Sunday at 7 p.m. ET/PT

What is Frontotemporal Dementia?

Victims are usually in middle age, but some have been in their 30s when they were afflicted with frontotemporal dementia, or FTD, a devastating form of dementia. People with FTD either lose their personality to the degree their own families can’t recognize them anymore or they lose their ability to recognize themselves in a cruel twist to a disease that’s always fatal. Bill Whitaker reports on this little-known form of dementia that steals personalities from people in their prime years and inflicts huge burdens on their families on the next edition of 60 Minutes, Sunday, May 5, at 7:00 p.m., ET/PT on CBS.  

FTD robs people of their personality, judgment, empathy and, sometimes, their speech.  57-year-old Thomas Cox lost interest in his family and job a few years ago and subsequently was fired. He knows he has FTD, but is unaware of its effect on him and his family; he spends much of his time looking at pictures on his cell phone and seems capable of doing little else. “I can blame the disease. I can say that the disease stole my husband,” says his wife, Lori.

Dr. Bruce Miller is a leading researcher of FTD and is working hard to find a cure or therapy for the devastating disease. Whitaker met Cox at Miller’s lab. “This is profound as anything that can happen to a human being. It robs us of our very essence of our humanity, of who we are,” Miller says. He’s studying Cox and others, some of whom can exhibit dangerous or impulsive behavior, like Mark Johnson, whose family found it necessary to put him in an assisted living facility at the age of 39.

Amy Johnson, his wife, tells Whitaker at first her husband became indifferent and could no longer watch their children or hold his job. He also displayed impulsive and compulsive behavior. “He couldn’t stop eating. I started locking the food up… I took his credit card. He’d walk down to the grocery store and steal food,” says Amy. A healthcare worker helped her make the decision to move him out of the house. “Because now when he thinks of something, the part of his brain that tells him ‘that’s a bad idea’ doesn’t work anymore.” Amy must use savings that Mark intended for their retirement to pay the thousands of dollars a month it costs to care for him in the facility where he now lives.

Neither Cox nor Johnson have any real sense that something is wrong with them. But in the other variant of FTD that Miller is studying, the loss of speech and communication, victims can be aware of what is happening. The Very Rev. Tracey Lind, 61, was dean of Trinity Episcopal Cathedral in Cleveland for many years before she began to have difficulty recognizing congregants and finding the right word in her sermons. Then she had an episode that stunned her.  “I was washing my hands and I looked in the mirror and I did not recognize my own face.”

The news has been hard on Lind and her spouse Emily Ingalls, whose caregiver burden will only grow over time. In the meantime, they make appearances to raise awareness for dementia and educate its victims and their families. It’s Lind’s new ministry. “I’m going to face this disease called FTD that I’d never heard of before and I’m going to see what I can do with it,” she tells Whitaker.

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