Toronto Star
Dec 23, 2007
Joseph Hall
Health Reporter

A disease that steals the self

Frontotemporal dementia attacks areas of the brain where key parts of the personality reside

As always, Diane Schaef is impeccably turned out.

Her blue-grey cashmere sweater is accented by a string of pearls, which circle a neck that would surely have been described as regal in earlier times. Her greying hair is stylishly short and beauty-salon neat. Her skin – a genetic gift from her Aunt Doey, they say – is creamy and, at 58, almost flawless.

But it's her eyes that stop you. Black, black eyes. Eyes once incandescent with intelligence, authority and sometimes mirth – eyes now flat and eerily still.

Those disturbing eyes tell her story.

It's a story of descent from happy confidence to crippling self-doubt, of profound personality change, of people stricken in the prime of life, and of a little-known brain disorder called frontotemporal dementia.

"Isn't she beautiful," says her husband, Bruce Schaef, 65, a baritone with the Canadian Opera Company and the artist behind his wife's daily glamour.

"I do it to honour her ways ..." Then tears well up and he turns his gaze away.

Diane Schaef is in an advanced stage of frontotemporal dementia, commonly known as FTD. It's a degenerative neurological ailment that attacks the brain's frontal and temporal lobes, where personality traits and language control largely reside.

It's a disease, says Dr. Tiffany Chow, that attacks men and women equally and can replace a loved-one with a doppelganger stranger. Unlike Alzheimer's disease – which steals memory yet can leave personality intact for lengthy periods – FTD is a body snatcher.

A disease that steals the self

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