“I don’t understand it. My mother thinks our granddaughter is her ‘baby’ daughter. She doesn’t seem to recognize me as her daughter and calls me Inez, which was her sister’s name.”
“My wife does not recognize herself when she looks in the mirror. Sometimes she points ‘at that woman’ in the mirror and then accuses me of having an affair. At other times, she says, ‘That’s an ugly old woman.’ I don’t know what to say or do.”
“My father talks about his Dad coming to take him fishing. When I try to tell him this can’t be true, he just gets mad and accuses me of lying to him. I am at my wits end and don’t know what to do.”
“When I told my aunt that her husband could not come to see her because he has been dead 25 years, she got very upset and cried inconsolably.”
These situations are common when a person has a dementia such as Alzheimer’s disease, and they can be challenging for the caregiver. Such behavior is a reality of the disease, and it needs to be understood--not taken personally. There is no one best approach that is guaranteed to work with every person; however, keep in mind the following principles when dealing with the challenges of caring for someone with dementia.
People in the examples given above are not intentionally being difficult. If you view their behavior as being done on purpose, it will only create a self-destructive pattern of anger and frustration. Try to understand the "why" of the behavior—there is a reason for it. Behavior usually does not occur in a void.
As the disease progresses, trying to convince a person that you are right and he is wrong will usually only create agitation and anger. And, you may only convince the person that you are someone not to be trusted. Try to step into the world of the person with dementia to understand his perceptions, thoughts and feelings. For example, to a woman who no longer recognizes herself in the mirror, it may seem as though another woman is in the house. A tree branch hitting against a window when the wind blows may seem as though someone is “trying to get into my room.” A radio or TV talk show playing in an adjoining room may seem like people are in the next room.
Early in the disease process, Alzheimer’s disease steals the brain’s ability to record information and events. Thus, the person can no longer remember a major event that occurred in their life the day before, information shared, instructions given, or an agreement made just minutes earlier such as agreeing to wait at a specific place while the caregiver goes to the restroom.
As Alzheimer’s disease progresses, it increasingly erases stored memories. “Today” for the person may be what was occurring 10, 20, or 40 years earlier. As a result, the person may talk about a family member or friend, long dead, as if he is alive, and may not recognize the people around him. For example, a man may not know his granddaughter or may think that his daughter, who looks a lot like her mother, is his wife, or that his nephew is his brother.
People with dementia lose their memory, but not their sensitivity to the emotional climate around them. Sometimes a feeling—positive or negative—will remain long after an event has occurred. Emotions are also very infectious, and a person will often mirror the emotions of others. If you are tense, annoyed, or angry, the memory-impaired person may show the same emotion.
Pleasant experiences impact the person’s overall well-being. Sometimes family and friends feel it’s not worthwhile to visit or engage the person in an activity because “it won’t be remembered, anyway.” It’s then important to look at the joy that is created for the moment—the joy experienced may remain long after the actual activity.
An important key in meeting the challenges of caring for someone with dementia is modifying the environment and/or our own behavior—NOT trying to change the person. Trying to reason or rationalize with the person, or expecting him/her to change, are not effective strategies. The disease “steals” these abilities from the person. It’s important, as a caregiver, to remain flexible. For example, if a person resists an activity, such as bathing, try again later. If the person does not recognize herself in a mirror and becomes angry because “there is another woman in the house” or makes accusations of infidelity, one solution is to remove or cover the mirrors.
If the person says something you know can’t be true—for example, “My mother is coming to see me today," and you know her mother is dead—don’t argue about the correctness of what she said. Either let it go or look for the feeling behind the words. If the person seems pleased her mother is coming to visit, you might say something like “Tell me about your mother.” On the other hand, if she is upset, you might use distraction.
The goal is to create a feeling of comfort and to connect with the person in a positive way. Focus on feelings, not facts. If you argue about the “facts,” or try to convince the person she is wrong, you’re likely to make the situation worse and convey that you are unfriendly or not to be trusted. Connect with the person as you would with a friend.
The person with dementia tends to be easily distracted. Use this to your advantage. Often you can interrupt difficult behavior or avoid potential problems by diverting the person’s attention. For example, you might divert the person who “wants to go home” (when he’s already at home) by saying, “Let’s have a dish of your favorite ice cream first.” Avoid statements such as “This is your home” because that is more likely to lead to a disagreement.
For more information about relating to the person with dementia, approaches to specific problems, and the importance of taking care of yourself as a caregiver, download the Oregon State University Extension publication # PNW 314, Helping Memory-Impaired Elders, at http://extension.oregonstate.edu/catalog/pdf/pnw/pnw314.pdf.