Where does the fear come from?

Most of the sources of fear that I can think of don't come directly from the experience of people with Alzheimer's at all but from those looking on from the outside.

Our fears may come from the images of Alzheimer's in popular culture, which are almost exclusively of advanced disease: The patient has bursts of anger and paranoia; she wanders aimlessly and can't even recognize members of her own family; he lies mute and helpless in a nursing home bed.

Our fears may come from our observation of severely demented people, staring blankly into our faces, embarrassing us as we don't really know what to say.

Our fears may come from the stories of exhausted caregivers who have been traumatized not only by the terrible emotional and physical stress of caring for utterly helpless invalids but also by the gradual loss of comfort and support from the one they have loved and depended upon for decades. These sources tell us of deep suffering on the part of the caregiver but may not say much about the actual experience of the demented one being cared for.

None of these sources asks the patient directly what it's like to be in his or her mind. And, due to the fear, embarrassment, and shame that surround the disease, no one with Alzheimer's is going to volunteer their stories, either. So we know little about the experience of the disease at all.

We know little about the stages of the disease (many of which are not so scary).

  • Early on, at my stage, no one notices the subtle symptoms and most people aren't going to volunteer anything, either, so we don't hear about early Alzheimer's.
  • As things get worse and memory deteriorates, people learn to hide their disability by faking normalcy (often quite well) or avoiding interactions completely, so we don't know that part.
  • At a more severe stage, the person with Alzheimer's may stay (or be kept) out of sight even though she is still able to contribute.
  • And after still further decline when the patient's memory has gone, it may be very difficult for the patient to be in public despite her capacity for meaningful interaction with others.

The end result is that our fears rarely come directly from the experience of an actual patient but from our imagination, an imagination that has had little real contact with Alzheimer's. What could be more terrible, we imagine, than forgetting the name of a person you know well; repeating the same thing you just said five minutes ago and five minutes before that; standing there mute and unable to join the general conversation; or vegetating in that nursing home bed?

But those are our projections now (as people without dementia) of how we would feel if we were demented. But since we aren't demented, we don't actually know what we would experience or how we would feel. Perhaps we have a distorted picture of the experience of Alzheimer disease.

Here are some counter-examples that do show each of these stages but the images are far different from what we'd expect.

  • I am myself early in the course of the disease and I can still write a blog of my experiences and find my way downtown to go bike-riding to the library with my grandchildren.
  • One delightful movie Friends With Benefits provides images of a later stage of the disease. The father is indeed sometimes confused, but not always, and he ends up playing an important and positive role in his son's life.
  • Joy is a significantly demented woman not really able to interact socially with others, yet she brings meaning and happiness when she visits our hospice.
  • Years ago I saw a documentary in which a daughter and demented mother were dancing joyfully around the room. The daughter later explained that her mother and she had had a terrible relationship most of their lives. Now her mother had forgotten those difficult times (indeed, had forgotten who her daughter even was), and for the first time they could enjoy each other.

Many of the comments in this blog and emails that I'm now receiving write of relationships with people in much more advanced stages, in which companionship, love, humor, closer relationships, and deeper meaning have become possible because of the Alzheimer's. Several people have told me of reconciliation with estranged parents as old hurts are forgotten and both people stay completely in the present.

In fact, we don't know what our experiences of this disease might be.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

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