“It’s as if I’m a single parent, even though I still have my husband,” says Karen Henley.
Incredibly, at only 36 years old, Karen Henley’s husband Mike was diagnosed with early onset Alzheimer’s disease.

The Henley children, Courtney and Brendan quickly learned that life as they once knew it was gone forever. Karen has become her husband’s primary caretaker.
“She has to help him with everything, like getting in bed, taking a shower, going to the bathroom and even sitting down. It’s not fun to watch him do this, it’s very hard,” says Brendan Henley, Mike and Karen’s son.
Early onset Alzheimer’s disease is much like Alzheimer’s disease in older adults. It’s a progressive, degenerative disorder that attacks that brain’s nerve cells, or neurons, resulting in loss of memory, thinking, language skills and behavioral changes. However, early onset of Alzheimer’s disease is considered rare and generally affects people ages 30 to 60.
“As a young person, to lose the person that you are, which is what Alzheimer’s does, is almost as if someone opens a plug and the person from within is lost,” explains Barbara Vogel, a social worker with the Long Island Alzheimer’s Foundation.
Multiple research studies indicate that genetics play an integral role in developing early onset Alzheimer’s. In fact, Mike Henley’s mother was diagnosed at 45 years of age with early onset Alzheimer’s.
Karen has been relentless in her effort to get help for Mike but she continues to hit a brick wall. “I’ve tried getting him into medical trials, but because of his age, he wasn’t accepted. They would only take patients 65 and older,” says Karen.
Currently, Mike is in the hospital where doctors are trying to regulate his medication. While at home, Karen does her best to be both mom and dad, but Karen and the kids anxiously await Mike’s return home.
“Losing a dad is difficult for the kids. Although he’s still there, they’re still dealing with the loss of a parent,” explains Barbara Vogel.
For Courtney and Brendan, their dad’s early onset Alzheimer’s catapulted them straight into adulthood.
“If we’re trying to do homework, we have to keep our eye on him to make sure that he’s not getting himself hurt or anything. It just makes everything a little bit harder,” says Courtney Henley, Mike and Karen’s daughter.
Social worker Barbara Vogel says the best way young families can cope with a relative’s early on-set Alzheimer’s is to ask for help and be receptive to taking help from people who offer assistance.
“Contact people in your area who can help you with accessing services, finding programs,” says Barbara.
For Karen, she says the support she receives from the Long Island Alzheimer’s Foundation helps her and the children remain resilient.
“Keep praying and keep hope, because you never know when there could be a miracle out there,” says Brendan Henley.
The Alzheimer’s Foundation of America can help you locate local chapter support groups.
For more information on early onset Alzheimer’s disease click here, www.alzfdn.org.

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