The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying

1 The Moral Challenge of Alzheimer Disease: Defining the Task

I The Moral Challenge of Alzheimer Disease Defining the Task one 1 Seldom does human experience require more courage than in living with the diagnosis and the gradual decline of irreversible progressive dementia . While the body of a person with dementia often will remain strong for a number of years, mental capacities as well as the accumulated competencies and memories of a lifetime painfully slip away. This slippage is less emotionally traumatic for affected individuals only when they begin to forget that they forget. Some people with Alzheimer disease (AD), the major cause of such dementia, live for two decades after initial clinical symptoms appear, although most live on for no more than seven or eight years. It is easy to understand why many fear dementia as much as or even more than cancer, for with cancer self-identity is usually not at stake and physical pain can in most instances be controlled without compromising mental lucidity. The person with cancer will retain his or her autobiography , or life story, and the sense of temporal continuity between the past, the present, and the future, but the person with AD will eventually outlive much of his or her brain. The progressive destruction of the brain before the death of the body is a more vexing social, ethical, and economic issue than is death itself. How can affected individuals and their caregivers maintain “the courage to be” before the foreboding specter of dementia? Among the most urgent questions of our time is whether human beings have the moral and ethical signposts in place to point toward a future in which 2 I The Moral Challenge of Alzheimer Disease those who are so forgetful will be treated with dignity. I will attempt to define such signposts, although words can neither fully express nor adequately honor the moral voices of caregivers and their loved ones. An author can merely reflect on the emotionally wrenching stories of moral altruism and love as dementia breaks into the previously routine lives of individuals and families, like a tidal wave disrupting everything in its path. The person with dementia is eventually swept away, while caregivers look back and feel forever changed by their experiences. Without a cure for AD, the aging society and lengthening life span is a very mixed blessing for too many of us. A commonly heard summary of the epidemiological studies is this: by age 65, about 2–3 percent of people have probable AD, and this percentage doubles every five years, so by age 75 about 12–14 percent have probable AD. Right now, we are living on average into our middle and late 70s. For those who live to be 80, their probability of having AD is closer to 25 percent, and for those 85 and older, studies suggest that somewhere between a third and a half may be affected. It must be stated immediately that most people, by about age 70, have some slowing of cognition and weakening of memory, but this is not dementia. As one of my neurologist friends, Joseph M. Foley, M.D., states the difference between normal age-related forgetfulness and dementia , “It’s okay to forget the name of the restaurant where you had lunch today, but it is not okay to forget that you had lunch at a restaurant . Or, it’s okay to forget where you parked your car, but it is not okay to forget that you have a car that is parked.” Between normal age-related loss and dementia is a condition called mild cognitive impairment, which usually leads to dementia. It was generally easier 200 years ago to “honor thy father and thy mother” or to care for a spouse, because people lived much shorter lives, often dying well before the age of 50. With medicine to rescue us from the jaws of death and with sanitation and public health, we now live much longer on average. There were always those people who, like John Adams and Thomas Jefferson, lived into their 70s or 80s, but they were relatively rare. Today it has become not only more challenging and important for adult children to fulfill obligations to parents but also more difficult for society to meet the massive needs of elderly persons, so much so that we now hear of debates over “intergenerational justice” and “fairness between the young and the old.” These are serious matters that no civilization in world history has yet had to grapple...