June 13, 2013 at 8:16 PM ET
Just two years ago, Barbara Whitmarsh was a woman who seemed to have it all. She was a highly regarded scientist at the National Institutes of Health. Married for 30 years, she’d raised six children with her beloved husband, John.
But then John Whitmarsh started to notice some disturbing changes in his wife, now 62. It was as if the woman he’d married and lived with all that time was slowly and inexorably fading away.
“Her ability to feel empathy, her personality, it just disappeared over a period of time,” John said. “I would ask her, ‘Is there anything wrong?’ and she would say, ‘No, I love you and everything's fine,’ but she wasn't there. And she said it in that flat way.”
A scientist himself, Whitmarsh knew there was, indeed, something wrong. And he was worried. He asked his wife to see a psychiatrist who eventually diagnosed her with frontotemporal dementia or FTD.
It’s a dementia that generally strikes at an earlier age than Alzheimer’s disease. And its symptoms are different – at least in the beginning – from Alzheimer’s because it originates in a different part of the brain.
It’s also a disease that until very recently doctors thought was rare -- but that view is changing.
“We've begun to realize that frontotemporal dementia is actually more common than Alzheimer's disease in people with degenerative disorders under the age of 60,” said Dr. Bruce Miller, director of the Memory and Aging Center at the University of California, San Francisco.
The Alzheimer’s Association estimates that in people younger than age 65, FTD may account for up to 20 percent to 50 percent of dementia cases.
While Alzheimer’s can eventually lead to behavior problems, it starts with a deterioration of memory as neurons in the hippocampus are destroyed. FTD starts with behavior problems caused by the death of nerve cells in the frontal lobes, then spreads to other areas of the brain, leading to fading memory. As the diseases progress, they become more and more difficult to tell apart.
A key symptom of FTD is a loss of inhibition since the frontal lobes are responsible for judgment, decision making and self-control. Before her illness Whitmarsh watched her weight closely. In just a year she has gained 30 pounds.
Because those early symptoms can be mistaken for psychiatric illnesses, people with FTD are often misdiagnosed, Miller said.
For that to change there will need to be “a paradigm shift in our society,” he added.
“I think traditionally people have thought about behavioral symptoms such as loss of empathy for other people, addiction later in life, disinhibition, as not having a neurological origin. I think that when people begin to realize that when someone in their 50s or 60s suddenly loses empathy for others, becomes disinhibited, becomes profoundly apathetic, begins to overeat, frontotemporal dementia needs to be suspected.”
“It’s a tragic problem because often the first manifestations of the disease are bad judgments and disruption of the family infrastructure happens,” Miller said.
For Barbara Whitmarsh, the brain damage due to FTD has meant living in a locked nursing home, where she moves compulsively and constantly.
As the disease has progressed it also has robbed her of her memory. She seldom recognizes her husband or their children and she rarely speaks.
As with Alzheimer’s disease and other dementias, there is currently no treatment for FTD.
For more information on FTD, please visit The Association for Frontotemporal Degeneration: http://www.theaftd.org/