Every 65 seconds, someone develops Alzheimer’s, and their family and friends must become caregivers. Experts share the 15 things no one tells you about the challenges—and rewards.

Your loved one may do wildly inappropriate things

Senior woman with walking stick being helped by a female nurse at home. Full length shot of female doctor with elderly patient at nursing home.JACOB LUND/SHUTTERSTOCK

“Sometimes people say and do things that are out of character,” says Ruth Drew, director of Information and Support at Alzheimer’s Association. She recalls the time a woman—who had always been very proper—began taking off her clothes from the waist down. One of the residential care facilitators suspected that there was something going on and had her tested for a urinary tract infection—which turned out to be the problem. “You need to play detective and discover what is triggering the behavior,” says Drew.  “The circle of life reverses itself and sometimes the child becomes the parent,” notes Gail Pearson, Memory Care Unit Manager, Jeffrey and Susan Brudnick Center for Living.

Loss of inhibitions

Pleasant memories. Portrait of old charming couple remembering sweet moments. Woman is looking at husband while laughing. Man is regarding at picture while tenderly cuddling wifeOLENA YAKOBCHUK/SHUTTERSTOCK

“It is not uncommon that my husband opens his zipper. He doesn’t do it to be sexual. He thinks it’s funny,” reports a family caregiver. “He also tries to kiss strangers because he truly believes everyone likes him.”

Expect delusions and hallucinations

15 Things No One Tells You About Alzheimer's DiseaseLOGOBOOM/SHUTTERSTOCK

“Delusions can turn on a dime,” notes Pearson. Patients may say sexually inappropriate comments because they have no filter, she says.

Speech may disappear

Thoughtful retiree looking what going onOLENA YAKOBCHUK/SHUTTERSTOCK

Even though she had been a social worker for over two decades, Tanjulla Tyson-Wearren was surprised when her mother suddenly couldn’t speak. “It was an emotional roller coaster. I was not prepared to never hear her sing a song or say hi,” says Tyson-Wearren. “Even when they cannot speak, there are still ways to connect, “says Drew.

They may forget how to shower

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“Confusion becomes the central way of thinking,” notes Crystal Polizzotti, Healthy Aging Program Manager at Elder Services of the Merrimack Valley. Polizzotti notes that there are about 15 steps to taking a shower that we don’t even think about—but that a person with Alzheimer’s may find impossible to complete. One of the caregivers told Polizzotti that the only way she could get her husband to shower was to go in first. “You have to get creative,” notes Polizzotti.

Alzheimer’s is deadly

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It’s the sixth leading cause of death, Drew points out: “A lot of people still do not understand that Alzheimer’s cannot be prevented, slowed down, or cured.” The Alzheimer’s Association’s Annual Report notes that one in three seniors will die with Alzheimer’s or another form of dementia. Alzheimer’s kills more people than breast cancer and prostate cancer combined.

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