Ethical Foundations of Palliative Care for Alzheimer Disease

ONE: Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease

mc h a  t e r o n e Darkness Cometh Personal, Social, and Economic Burdens of Alzheimer Disease Richard L. O’Brien, M.D. Alzheimer disease (AD) and related dementias impose immensely heavy burdens on individuals, families, and society. Those with AD suffer terribly, caregivers are robbed of familial and social relationships, families and society pay exorbitant costs for care and lost productivity. m Persons with Alzheimer Disease Dementia is unfathomable to one who has never experienced it. It can be described , but it can be known only to those who have it. The onset and progress of dementia is insidious and progressive. Those afflicted become slowly aware of memory loss and diminution of their ability to concentrate and sustain higher intellectual functions. At first there is worry over failing memory, then fear that disastrous changes are occurring. When they and their families learn the diagnosis and that the outcome is inevitable, that they will continue to deteriorate, lose cherished human relationships, and become increasingly, and ultimately completely, dependent on others, the sense of loss and impending doom is devastating . Once diagnosed, those with AD are frequently depersonalized by others who position them as incompetent, unable to comprehend or to function, having lost personal attributes, having lost their “self” (Sabat, 2001). Persons in early stages of dementia experience frustration, embarrassment, and shame from increasing forgetfulness, inability to find words to express themselves, episodes of not knowing where they are, where they have been, or what they have done, and not knowing for certain to whom they are speaking. You so often feel that you are stupid for not remembering things or for not knowing things. . . . Just the knowledge that I’ve goofed again or I said something wrong or I feel like I did something wrong or that I didn’t know what I was saying or I forgot. (Henderson, Henderson, & Main, 1998) I feel so stupid. . . . I don’t remember what I did from minute to minute. (Hoffman, 1994) One of the problems of having such a bad memory is the unbelievable waste of time spent looking for things. (Shelia, 2000, p. 3) Those in the early stages of AD experience fear, guilt, depression, and despair — I have pushed myself into depression, and feelings of failure, and guilt for the destruction this disease has wrought. . . . I’m tortured with guilt, and yet I’m helpless to change what has happened to me. (Jan/Mina, 2001) especially when they are aware that failing memory and their behavior endangers or hurts their loved ones. My poor dear husband didn’t stop me very much unless it was too outrageous and then I’d get very angry. (Tennis, 1992) The worst feeling is that of not being able to trust yourself. (Shelia, 2000, p. 3) I can still cook and yet without a doubt can be distracted ...and completely forget that I have anything on the stove. (Jan/Mina, 2001) I never cook when alone . . . but I still can microwave. (Tennis, 1992) Uncertainty plagues them. There’s no such thing as having a day which is like another day. Every day is separate. . . . It’s as if every day you have never seen anything before like what you’re seeing right now. (Henderson, 1998) Time seems to run a little differently. (Hoffman, 1994) 8 Health Care Challenge of Alzheimer Disease The shame and the insecurity of never knowing whether they are or have been functioning well or not, of appearing demented to others, frequently leads persons in these early stages to cover their uncertainty by expressions of anger, confabulation, excuses for lapses, and deceit. I’m not sure why I cannot be honest with those around me. (Jan/Mina, 2001) I knew something was wrong with me, but I didn’t want this to be seen by anyone else. I wanted to stay normal. I was always terrified my wife would find out. (Marshall, 1997) Increasing uncertainty of how they function and knowledge of growing more dependent on others renders them much more susceptible to depression than others of similar age who are not in these early stages of dementia. As they continue the spiral into the disease, persons with AD reach a point when they are never certain where they are, whom they are with, what time, day, month, or year it is. Uncertainty, disorientation of time, place, and person gives rise to...