John and Barbara Whitmarsh
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Frontotemporal Degeneration, FTD

In his story, John Whitmarsh shares the high emotional cost of caregiving as he watches the wife he has loved for 31 years disappear into a void caused by a form of dementia called frontotemporal degeneration, FTD.

The disease affects the "frontal temporal lobes" of the brain, the front and sides above and alongside the forehead. One of the most disturbing symptoms of FTD involves the destruction of the area of the brain that gives us our personality. The changes in the patient's behavior can be extreme and unsettling, giving friends and loved ones the feeling that the person they know no longer exists. FTD is a progressive, degenerative disease that slowly destroys a person's ability to relate and communicate. [http://memory.ucsf.edu/ftd/overview]

The symptoms of FTD include:

  • a lack of empathy
  • a lack of impulse control
  • difficulty relating to others
  • memory and cognitive deficits

Another symptom of FTD is aphasia which robs a patient of the ability to express themselves, a vital part of relating to others. "These people have lots of problems speaking and making words. They understand what you're saying but they can't express themselves," says gerontologist Freddi Segal-Gidan. In some patients with FTD there are also pronounced changes in motor skills and coordination.

It is estimated that about 50,000 to 60,000 people in the U.S. have frontotemporal degeneration, representing a small proportion of the 5-7 million people affected by dementia.
[http://www.theaftd.org/frontotemporal-degeneration/ftd-overview]

Dementia is a major symptom of many brain disorders, including FTD and Alzheimer's, but the diseases are different. Alzheimer's is characterized by memory loss while FTD's hallmark is a loss in language and social skills. Also, FTD tends to strike in mid-life, when a person is in their late 40's, 50's and 60's while Alzheimer's is usually diagnosed later in life.
[http://www.dementiatoday.com]

If you are concerned someone you care for may have frontotemporal dementia, the best way to be sure is to consult a doctor and ask for a neurological work up that includes brain imaging.

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Funders
MetLife Foundation The Lippey Family Trust Gladyce L. Foster
California Community Foundation