Betty Nielson never used to like chocolate. Then one day she loved it. Drinking water was never her first choice. Then, all of sudden, she started requesting it all the time.

“It (was) odd seeing her changing her likes and dislikes, seeing her eating habits change,” said daughter Jan Schermerhorn.

The late Nielsen suffered from dementia and resided at Presence Cor Mariae Center in Rockford. Schermerhorn said she had seen other behavioral changes in her mother, too.

“She (was) more vocal about her disapproval where in the past she would have kept things private,” said Schermerhorn, 70, of Rockford.

Richard Apple, senior manager, care navigation and early stage engagement at Alzheimer’s Association Greater Illinois Chapter, said the changes in Nielsen’s behavior are not unusual for people experiencing maladies like dementia or Alzheimer’s disease.

“It’s very common,” he said. “The tricky thing is it can vary in how it shows itself in each person. No one can predict how they’ll act. Every person is unique and how these diseases affect them is just as unique.”

Apple said he experienced changes in his own mother’s behavior when she was battling dementia.

“My mom was always amazed at people who were overweight, but kept it to herself,” he explained. “She never would have said something to hurt people’s feelings. One day when we were out to eat she said aloud, 'Look at that girthy man over there.’ That’s not something she would have said before. Trying to explain to her why it was inappropriate was unsuccessful, so I had to have a strategy to distract her or move her from the topic.”

Behavior changes

For some, the changes are more drastic and worrisome. Ann Graceffa of Loves Park said her aunt, Waltraut “Trot” Hurd, who had served in the U.S. Army as a psychiatric nurse during the Korean and Vietnam wars, began writing checks for large amounts of money for questionable repairs. Worse, her agitation and frustration manifested itself in more aggressive, physical behavior.

“When her mind deteriorated, she started becoming very mean and aggressive,” said Graceffa of her aunt who has suffered from dementia and Alzheimer’s for 15 years. “If someone got in her way when she was frustrated, she would push them over, which is not something she would have normally done. She’d been an intelligent, fun-loving person.”

More than three million cases of Alzheimer’s disease, the most common form of dementia, are diagnosed each year. It is a progressive disease that destroys memory as well as other mental functions. Changes in behavior are typical.

Learning about dementia

One of Nielsen’s roommates at Presence Cor Mariae, who also has dementia, used to wash her paper towels, laying them out on the furniture to dry, so they could be reused instead of thrown away. She took an unusual liking to Schermerhorn when she would come to visit her mother.

“My mother’s roommate would grab my hand and always want me to go to her room with them,” Schermerhorn said. “She always wanted to talk with me, like she knew me, like I was someone in her family.”

Apple said it is important for caregivers to learn as much as they can about dementia so they are not caught unprepared by their unexpected behavior.

“The key for caregivers is to develop understanding of the type of things to expect and steps to how to deal with them,” Apple said. “The more you know about the disease the more you’re prepared so you don’t aggravate the situation. For instance, it’s a mistake to try to reorient them to reality. The patient feels they have a really good reason for what they are doing so they won’t understand what you are trying to do to correct them. They’ll get frustrated, and so will the caregiver if they don’t realize the person is not capable of changing their behavior.”

Dementia can often result from a stroke, and in their guidelines for caring for persons with dementia, the American Stroke Association recommends patience for caregivers when dealing with sufferers.

“If the person is perceiving something incorrectly, do not argue,” Dr. Jean Posner, a Baltimore, Maryland, neuropsychiatrist, wrote in the guidelines. “We are used to trusting what our brains tell us and are likely to continue that trust even when the brain is damaged and no longer sending correct information. Instead of arguing, change the topic.”

Addressing fear

Apple used an example of a patient with a purse.

“It’s important to understand (when) they get fixated on something that they’re losing the ability to understand the environment around them,” he said. “They’re also losing the ability to explain that environment, so their behavior only makes sense to them and no one else. For instance, if they have a purse that they know needs to be safe, they pick (an) unusual place to put it and then, because dementia affects their ability to remember and problem solve, they forget where they put it.”

He said their mind will make up a reason for why the purse is missing. Perhaps the neighborhood kids came into her room and took it. Whatever the reason, it will make perfect sense to them.

“Using logic with them in this situation won’t work and they’ll just become defensive, agitated and not trust you can help them,” Apple said. “As caregivers, we need to look behind the statement, what they are verbalizing, look for real things they worry about. Don’t confront it directly. Help them problem solve and directly address their fear and loss. Maybe do a search and reassure them that you’ll take care of it.”

Graceffa was given the same advice by the staff at Highview In the Woodlands, the Rockton assisted living facility where Hurd resides.

“They explained to us that whenever she is confused, there is no reason to argue, and actually arguing would make them more agitated,” Graceffa said. “What we do now is divert her attention to something else and help her forget her confusion.”