15 things no one tells you about Alzheimer’s disease

You probably know someone who has Alzheimer’s disease. The most common dementia, Alzheimer’s affects up to 70% of all people with dementia. This means family and friends may have to assume a new role – the role of a caregiver for an ageing relative. (Although early-onset Alzheimer’s can occur in people younger than age 65, according to the Alzheimer’s Association.)

There are rewards and challenges when you become a caregiver for someone with Alzheimer’s disease, including a risk of caregiver burnout. We asked experts what caregivers and other people should know about this memory-robbing condition.

“Sometimes people say and do things that are out of character,” says Ruth Drew, director of information and support services at the 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 behaviour,” says Drew. “The circle of life reverses itself and sometimes the child becomes the parent,” notes Gail Pearson, a memory care unit manager at a facility for dementia sufferers.

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“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.”

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“Delusions can turn on a dime,” notes Pearson. Patients may say sexually inappropriate comments because they have no filter, she says. According to the Alzheimer’s Association, delusion tends to occur in the middle-to-late stages of Alzheimer’s.

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.

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“Confusion becomes the central way of thinking,” notes Crystal Polizzotti, healthy ageing program manager at an aged care facility. Polizzotti notes that there are about 15 steps to taking a shower that we don’t even think about. But, a person with Alzheimer’s may find impossible to complete these steps. 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.

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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Caregiver Martha Oliver notes that her husband likes to change his outfit several times a day and often has no idea what season it is. “He wants to put on a jacket in the summer,” she says. Although he sometimes talks gibberish and has difficulty communicating, says Oliver, “he has deep feelings. He tells me a million times a day he loves me.”

Humming a tune may help an Alzheimer’s patient when they are in distress, notes Jeff Allen, the life enrichment coordinator at an aged care home. “If a person with Alzheimer’s is yelling or agitated, you may be able to redirect them with music,” says Allen.

“There are many positive things that happen that take people by surprise,” notes Anne Weisbrod, the director of social services at a nursing home. “People who have been angry and frustrated may become affectionate and demonstrative. It is great for both the resident and their family,” she says.