Common Themes Among People Diagnosed With Alzheimer’s Disease
1. Denial. Too many people believe that people with Alzheimer’s Disease are not capable of understanding the disease. However, Snyder has found that some may go through periods of denial because of the difficulty in accepting the disease. Bill, a person diagnosed with Alzheimer’s Disease said, "I’m interested in this idea of denial. I think denial is helpful sometimes. You don’t want to carry this all the time. Denial can be very adaptive. It’s a psychological defense; we all use it and it can give us time to accommodate to a circumstance that may be very challenging." It is understandable that there is denial in some cases because of the unpleasant stigmas associated with the disease. James, another patient said, "A degree of denial is essential; like somebody drinking hot coffee, we sip the truth of our condition gently."
There may also be denial due to the fear that the person with the disease may become prematurely dependent. Or they may simply forget that they have the disease. Persons with Alzheimer’s Disease need understanding if they fluctuate between acceptance and denial.
2. Ambivalence in Disclosing Diagnosis. Because there is not widespread understanding of Alzheimer’s Disease, there are often misconceptions about the disease. Some with the disease fear that others will think the disease is contagious. Those diagnosed may also fear the stigma associated with the disease; therefore, they may not disclose it to their friends or family. Betty, a person with Alzheimer’s Disease, said, "when it comes to Alzheimer’s, you’re not sure how people will respond to you, people may brush you away because they're afraid of the disease." Snyder believes the ambivalence begins in the doctor’s office. She contends that when doctors do not appropriately disclose the Alzheimer’s Disease diagnosis to family members, that they are beginning the cycle of ambivalence.
3. Wanting Things to Stay the Same. There are often times when the feeling of: "If things could just stay as they are at one point in time," that those with Alzheimer’s Disease could learn to adjust to the disease. Harry said, "If only it could stay just as it is now; it would be great." Unfortunately, with this disease, it is always changing. Each day is different. One day the person with Alzheimer’s Disease may be able to do something and the next day they may not.
4. Fear of the Future. Among Alzheimer’s Disease patients, there is a fear of losing a sense of self. "What is going to happen to me?" is often the question that arises among those with the disease. One woman said, "I’m almost 71 and I’m not amazed that people die, so it isn’t the death; it’s the loss of oneself while you’re still alive." There are so many tragic images that can lead to fear of losing oneself to the disease. One wife very aptly said, "I’m very much aware that it’s a true medical disease. I realize now, at least in our case, that it appears to be a gradual process so it’s something we have to work our way into and through. So I’m finding it doesn’t mean an immediate personality change or becoming violent like I’ve heard. All this stuff you hear may happen among some people at some level but it’s gradual and you can adjust to it."
5. Day to Day Experiences of Memory Loss. Everyday is a new experience with Alzheimer’s Disease. One person adjusting to the disease said, "I take a step before doing something and ask, ‘Am I the same person? Can I do this?’" There may be daily changes in language and abilities to do certain tasks such as driving or paying bills. One man, who was an editor, said, "I’ll search for a word and I can see it walking away from me; it gets littler and littler, it comes back to me but at the wrong time; I can’t be spontaneous." Bob described his feelings about no longer being able to drive. He said, "losing my driver’s license was like someone cutting off my arm. I lost something that was a part of myself."
6. Changes in Self-Esteem/Self-Concept. Everyone defines themselves by their roles in life or by their characteristics. Those with Alzheimer’s Disease may be in a state of flux about how to define themselves. For example, before Alzheimer’s Disease, a mother may have defined herself by the role she played as the matriarch in the family. A man, who defined himself by his role as a doctor, may now find that that persona is lost. One woman demonstrated her ambivalence about her identity when she said, "sometimes I’m me and sometimes I don’t know who I am, I don’t know. It comes and it goes. You’re not really you, you’ve got someone kind of in back of you." Those with Alzheimer’s Disease need to be reminded that they are still people who will continue to be remembered for the roles and traits that defined them as well as their new roles. In later stages of the disease, providing the person with activities that reflect their previous expertise and interests enhances their peace of mind and autonomy.
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