In the early 1970s, I was working in a retirement home and observed the following: one of the residents slowly walked up to the nurses’ station and asked a question, something like, “What day is today?” The staff person answered and the resident turned around and started walking away.
After about a dozen steps, the resident turned around again, walked back to the nurses’ station and asked the same question. The staff person responded with the same answer, and the resident started to walk away, only to turn around, return, and ask the same question a third time. By this time, the staff person was getting a little annoyed and started raising her voice. After it happened a fourth time, the staff person very loudly told the resident, “I’ve already told you three times. . . ”
I do not know about you, but despite my empathy for the resident with memory loss, I know I have felt that staff person’s frustration on more than one occasion when talking with someone who has dementia.
So what was really happening in this situation? Obviously the resident had dementia and did not remember either asking the question earlier or the staff person’s answer. The problem is that people with dementia do not wear a sign saying, “I have memory loss; I cannot remember what you tell me.”
The best response the staff person could have had was to answer the question each time as if it had never been asked before, because in the resident’s mind, it had not been asked and answered before. However, this does not come naturally and requires some understanding of dementia to adapt our responses. Even professionals can forget and express frustration.
This column is not long enough to give exhaustive information about dementia, but I will try to give some information that will be helpful to those of you who have friends or family members with dementia.
There are a number of different causes for dementia, but the common feature with all of them is memory loss. However, this memory loss is not constant. Since it fluctuates, it is not until you are in a conversation that you will know the person’s memory status. Another feature of memory loss with dementia is that gradually people will regress in time. They may accurately remember things from 50 years ago, but will not remember something from five minutes ago. Because adult children may resemble people in the person’s life from many years ago, it is common for the person with dementia to call them by the name of the person’s sibling, parent, aunt, or uncle they resemble.
An early therapeutic attempt to help those with dementia was called “Reality Orientation.” With Reality Orientation, we were constantly trying to help people with dementia to stay in the reality of the present world. You probably have been in care facilities where there are prominent signs displaying today’s date, weather, season, and holidays. These can be very helpful for those with mild dementia, but are not as effective with those who have moderate to severe dementia.
Just imagine with me for a moment that someone is trying to prove to you that what you “know” to be true really isn’t true; in other words, that your reality is not reality. What would your response be? I would not be surprised if you became argumentative and difficult to deal with. In the same way it is no surprise when someone with dementia becomes argumentative and difficult when we try to make our reality their reality.
Another problem with trying to impose our reality on someone with moderate to severe dementia is that it can cause emotional pain each time we do this. For instance, suppose an elderly woman is saying, “I have to leave to go see my mother,” ( who was born in 1901). The reality is that her mother would be 111 years old at this point, if she were living, and the fact is that her mother is dead. When we tell this elderly woman her mother is dead each time she talks about going to see her mother, she will go through multiple episodes of acute grief.
So, what do we do? Some people advocate answering something like this, “Your mother called and said to stay here because she will be here later.” This is known as a therapeutic lie. It can be very effective, but sometimes can backfire if, for some inexplicable reason, the person remembers the lie and finds out later it was a lie. An approach I like better is to move into the other person’s reality. In the situation of the woman saying she needs to go see her mother, responses would be along this line: “You and your mother are really close, aren’t you? Tell me about your mother.” With these responses you have not challenged her reality that her mother is still living, but you are directing the conversation away from when she will see her mother to experiences and feelings about her mother. Since short-term memory is quite impaired in people with moderate dementia, she likely will forget she wanted to go see her mother as she talks about her, because the conversation about her mother fulfills her need to feel close to her mother.
One thing is certain about dementia. While memory may be impaired, feelings and emotions are not. If I raise my voice or use a disgusted tone of voice, the person with dementia will perceive this as anger, but will not understand why I am angry with him or her. Just take a moment to imagine what it would be like to live in a world where everyone was 20 years ahead of you. Would you feel disoriented? Would you know who the person was when you looked in the mirror? For many people with dementia the world they live in was 20, 30, 50 years ago or more. What they do know is that people who are kind and caring help them feel loved and secure. The more we understand the world in which the person lives, the more we can be that kind and caring person they need.
John Reese
Elder Care Coordinator