Changes range from confusion to paranoia, violence

Karen Henley rests briefly at the hospital where Karen Henley rests briefly at the hospital where her husband, Mike, has been brought because of trouble breathing as he grows weaker from late-stage Alzheimer's disease. (Aug. 5, 2009) Photo Credit: Newsday / J. Conrad Williams Jr.

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Family members often find behavioral changes in their loved ones to be the most challenging part of caring for someone with Alzheimer's disease. The changes can be subtle, such as overreacting to a mistake or criticism, or more pronounced, such as yelling, making false accusations or inappropriate comments, or even violence.

Those with Alzheimer's and related dementias often become confused and may forget the names of loved ones, as well as everyday items, such as a fork. They may also forget what such items are used for, experts said. They can ask the same questions repeatedly or make the same gestures over and over. They may sometimes become restless and anxious or begin pacing. Some develop paranoia and may have delusions. They may begin hoarding or accusing their caregiver of stealing from them. Sometimes, they refuse to wash or engage in proper hygiene. The person with dementia often has an interrupted sleep cycle and may stay awake at night and sleep during the day. Also many patients often suffer from "sundowning," where they become agitated and restless at the end of the day.

Changes in behavior can be triggered by any number of things, from illness or physical discomfort to overstimulation. Often, experts said, family members should get their loved one examined to make sure there aren't underlying medical or psychological issues causing the behavioral changes. Confusion and delusions, for instance, can be caused by a vitamin deficiency or a urinary tract infection, said Teepa Snow, a dementia care specialist and trainer. Many dementia patients also suffer from depression, she said.

When behavioral changes occur, caregivers need to try and put themselves in their loved one's place, imagining the confusion and conflicting signals their brain is sending them, experts said. For instance, with hoarding, the person may have a fear that they will need whatever they take - food, money, objects - at a later time, or it gives them a sense of security.

With hygiene, they may not understand that they haven't bathed in three weeks because in their mind, they have bathed every day. With toileting, a person may not understand why they are being undressed or who the person is trying to help them and feel they are being violated. A person may begin to wander because they have a desire to feel safe, to "go home" to a place they associate with feeling secure.

Often, the patient is frustrated with an inability to communicate or perform tasks they deem too complicated. It is important for caregivers to examine what may have led to the behavior change, experts said, and look at possible solutions, including the way they respond to the behavior. The caregiver should remember to look at the emotions or feelings behind the action, experts said, rather than simply focusing on the behavior.

"The caregiver really needs to learn how to speak dementia; it's like learning a whole new language," said Darlene Jyringi, who runs the Alzheimer's Disease Assistance Center of Long Island in Stony Brook. "How do you approach the person? How do you talk to the person? What do you do to make situations less frightening, like bathing, like toileting? You need to explain every step of the way."

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