“Karla DeMoe Hornstein is the only one of the six DeMoe children of Tioga, a small oil town in western North Dakota, without a mutated gene for early onset of Alzheimer’s.

“That distinction has left Karla, 58, essentially the guardian of an extended family in which each member has a 50% chance of inheriting a genetic mutation that leads to early Alzheimer’s. It claimed their grandmother, their father, an aunt and uncle. In the past few years, her brother died at 54 and sister at 56 of causes related to Alzheimer’s. Another brother lives in a nursing home and two others, ages 54 and 45, have the mutated gene but continue to work, showing no noticeable signs of illness.

“As power of attorney, Karla, a retired secretary, has had to take away her brothers’ car keys and move them into nursing homes. As advocate, she searched online for leading Alzheimer’s researchers and helped get relatives into clinical trials with drugs they hope will slow and possibly arrest the development of Alzheimer’s for themselves, their children and others.”

LTC Comment (from Stephen A. Moses, President, Center for Long-Term Care Reform):
An Alzheimer’s diagnosis at any age is difficult, but a family facing a 50% probability of early onset is a whole new dimension of personal tragedy.

How Alzheimer’s Defined a Family

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