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c h a p t e r s i x Dementia Fear and Anxiety An imagined monologue: OK, OK. So you already told me about different kinds of dementia and what it’s like to hear the doctor say, “You probably have Alzheimer’s.” I know that other people are important to us and that I should be grateful for my family and my friends. I do my best to stay in touch with friends, but you know, it’s hard these days with so many pressures on my time. My friend, Mary, doesn’t seem to be doing so well right now. She’s a few years older than I am and she doesn’t seem as sharp as she used to be. She calls me sometimes and talks about the same things in every conversation. At the end of the call, she repeats what she said at the beginning, as if she has no clue we’d already discussed those things. And, yes, I know you think that people need to stick together in communities and that we should get over our pride and learn to depend on one another. I hear that sometimes in church, though of course I’m so busy that it’s hard to get there regularly. You know something? To be perfectly honest, all this stuff sounds good, but you don’t understand. . . . I’ve had a few memory lapses lately. I have three children, and sometimes when I’m with them, I feel like they’re checking me out. I’m terrified I’ll forget something or repeat myself in front of them. In fact, my daughter has started bugging me to see my doctor. I’m scared of what he might tell me. What if I have it, like I think my friend, Mary, does? What will happen to me? In 1948, the year we were born, W. H. Auden’s long poem The Age of Anxiety won the Pulitzer Prize for poetry. Although the postwar years “boomed” with a high birth rate and economic growth (at least in the United States), Auden’s naming of the times rang true for many people. Existentialism’s stark, unapologetic vision of the human condition reverberated through philosophy, literature, and the social sciences, and some said the fruits of its critique of social structures (especially political and religious ones) ripened in the streets of protest in the late ’60s. Now, those who took to the streets, and their brothers and sisters who did not, are living into an old age that is fraught with a new form of anxiety: whether memory and cognitive fitness can be preserved until death. These are the people 94 Aging Together who merrily sang along with the band members of the Who (whose surviving members are now in their sixties) as they boldly declared, “hope I die before I get old.” Now, they are saying, “hope I die before I get dementia.” We have heard variations on this phrase when we tell people who are our age about this book. Sometimes, it seems as if they take a figurative step backward from us, as if even thinking about this topic might be infectious. Even more troubling are descriptions given by persons who are living with the diagnosis. Several have told us about walking into a room where people know about their diagnosis and seeing them move away. We have also heard how individuals diagnosed with a form of dementia are told by well-meaning friends, “Oh, I forget things, too.” In other words, to defend themselves against dementia fear and anxiety, people sometimes minimize its impact on those who are already traveling the dementia road. The very word dementia has become controversial because of the emotional freight associated with it. We were surprised by the strong reaction of a friend who asked about this book and was told the title referred to dementia. “You can’t do that,” she objected. “No one will want to read your book!” In a study conducted in Great Britain, people in the early stage of dementia described their negative reactions to the word dementia because it called up images of being “demented.” They stated no more positive feelings about the term Alzheimer’s disease, as they did not feel “diseased” (Langdon, Eagle, and Warner 2007). Researchers need to be cautious about the terms they use when they recruit people to participate in research. Because many are sensitive to the stigma associated with...

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