Loss and Alzheimer's Disease

Lin E. Noyes

Introduction

When I teach body mechanics to new staff members at the day center, we talk about what to do when someone starts to fall. The rule is: Protect the head and ease the person to the ground. It is counterproductive to try to stop the person from falling because both the caregiver and the person falling will get hurt. 

     When helping a person descending into Alzheimer's disease, we should follow similar advice: We should cradle the humanity of the person as he or she falls into Alzheimer's disease because, like cradling the head in a fall, the humanity is what is important to protect as the disease progresses. We can't stop the descent, but we can preserve a person's dignity and humanity throughout the ravages of the disease. 

     When the first ripples of awareness about Alzheimer's disease (AD) and other similar dementias crept into our sight 20 years ago, these diseases were thought to strip away a person's human essence, bit by bit, until there was nothing left. This concept is well described by Cohen and Eisdorfer (1986):

Loss of sight, hearing, an arm, or a leg challenges a person to cope with significant change. However, the victim of Alzheimer's disease must eventually come to terms with a far more frightening prospect-the complete loss of self. (p. 22) 

This view of "the Alzheimer's victim" predominated and is evidenced in the focus on caregiving and helping the families of AD patients in the early 80s because it was believed that nothing could be done for "the victim." Being an Alzheimer's patient was like being a passenger on a very bad journey, on which haloperidol and banishment to the nursing home were the only things that could be done to ease the descent of the victims into oblivion. 

     Our evolving understanding of the losses of AD mirrors the growth of research and knowledge about the disease over the last 20 years. It also reflects an increasing awareness of how the disease affects the person who is diagnosed with the illness and his or her family caregivers.

     It has been said that if you know one person with AD, you know one person with AD. Keeping in mind that each person is very different and that symptoms may present differently from one person to the other, this chapter begins with a discussion of terminology and then turns to describing loss as it occurs to people in the early, middle, and later stages of AD. Finally, it offers health care professionals some suggestions to help people who are experiencing these losses.

From "Victim" to "Person"

Our language reflects our values and beliefs. The use of the term Alzheimer's victim in the early 80s reflected a lack of knowledge about the disease and about what could be done to help the person whose life had been sacrificed to AD. Later in the decade we used the terms Alzheimer's patients and Alzheimer's residents, which reflected a growing awareness that at least these people needed care even though the emphasis was on the disease rather than the person.

     In the late 80s and early 90s, people diagnosed with AD began to describe what it's like to have this disease. We began to hear more about public figures who were diagnosed with or had died from AD. This knowledge made it harder to think about them as victims or patients and made us acknowledge that it is indeed a person who gets AD. Diana Friel McGowan's book, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's (1993), is a revelation of what people in the early stages of Alzheimer's experience. This passage from McGowan's book shows how her humanity, her "self," is affected by the disease: 

As I march-or am dragged-further into Alzheimer's disease, I am less ashamed of my more primal urges. Consequently, I am also far less judgmental of others for theirs. Perhaps it is a result of premature dementia but I think not. It is more likely the realization that I am probably coming toward my final stretch-that I have experienced many "last times" without understanding they were, indeed, the last time. This knowledge enables me to savor life more openly and ravenously. I appreciate all good things more, whether they be trusted friends, cherished memories, nature's beauty-or physical pleasures. (p. 87)

     It was only in the middle to late 90s that the depth of losses brought by AD became apparent, as people were diagnosed earlier and earlier in the disease process, some with exquisite insight into what was happening to them. People much further into the disease process began to express their personal losses, and caregivers began to contemplate how their actions affected the person and his or her experience with Alzheimer's disease. The use of the term person with AD reflected the belief that it is a person of value who experiences AD. Accepting the reality that being a person is more than remembering and being able to use brain functions helped normalize our view of people with Alzheimer's disease. 

     This expanded view of people with Alzheimer's sheds light on the dimensions of loss of the disease. There are three kinds of losses in AD. The first is caused by brain deterioration and results in decreased cognition and function. The second kind of loss arises from people's awareness of what the disease is doing to them as human beings. The third and greatest loss occurs when a person loses the recognition by others that he or she is a fellow human being.

     In discussions of Alzheimer's disease, we often find it useful to speak of the three stages-early, middle, and late-that typify the progressive nature of the disease. While this can be helpful in discussing the disease in general, we need to recognize the individual nature of the illness. In any individual case, clear evidence of stages may be absent. Each person with AD will show a unique pattern of decline.

Losses in the Early Stages of Alzheimer's

Even before a person is diagnosed with AD, losses begin to appear. Sam, a fellow in our early stage support group, told me he could attribute many of his early symptoms of AD before diagnosis to stress or being overworked, but the day he could not fill out his time sheet, which he had been doing for 15 years, hit him like a hammer in the middle of his forehead. He could no longer deny that something was terribly wrong. 

     This initial awareness that something was very, very wrong still ranks as the greatest loss he had experienced in the three years he has had the disease. For it was in that moment that he realized that his life had changed and would never be the same. His loss of the memory of how to fill out the time sheet was miniscule compared to what the loss of that little memory would mean in his life. Today, even though his words are few and his thoughts are sketchy, he still tries to tell about the day he couldn't fill out his time sheet and shakes his head as if he were remembering the worst day of his life.

     Paula lost her confidence in herself in the early days of her dementia even though her mini-mental scores remained normal for several years. Knowing that she was highly intelligent and experiencing trouble with the math needed to do simple bills made her very sad. She knew she was sliding into dementia, and while she was eager to fight it and advocate for herself and others who had Alzheimer's, she became overwhelmingly sad. Issues of continued independence in making business deals, driving the car, and even walking her daily four-mile course by herself were points of contention between her husband and herself. She would argue that she knew she was slipping but was not ready to give up these things that meant so much to her.not yet.

     These arguments led to the loss of her husband as a confidant, a lover, and a friend because in her view, he was not helping her, just trying to take things away from her. The warmth and comfort they gave one another were lost to both. Her suspiciousness led to her alienating her friends over time as she accused them of siding with her husband. While she was aware on some level that she was doing this, she could not stop it and she mourned the losses.

     The time before and after diagnosis, and into the first couple of years of the illness, people's lives revolve around themes of loss: loss of their roles and responsibilities, loss of their future, fear of loss of their past, and the inevitable loss of independence and purposefulness. Along the way, as people begin to lose cognitive functioning, many people are fully aware of their loss. 

Losses in the Middle Stages

Jack had been attending our day center for two years as a member of our midstage group. He had to be shown to the bathroom each time he needed to use it, had to be reminded about eating, and needed some cueing to finish a meal. He had apraxia (loss of the ability to carry out familiar, purposeful movements), which complicated his ability to put on his coat or use his silverware. The one thing he still enjoyed was fitting various colored rubber pieces into a grid to make a doormat. He was quite proud of each doormat design he made and showed them to everyone who came into the room. 

     His ability to communicate was hampered by serious problems finding words. It could take five minutes to find out that he wanted to know when his wife was coming to pick him up. On the other hand, he laughed at jokes and groaned when they weren't particularly funny. He still maintained his awareness and general orientation; he knew when he was at the day center and recognized his wife and the center staff (not necessarily by name). For the most part, he found such satisfaction doing the doormats and felt so supported in his environment that he accepted our cues and redirections fairly easily. 

     One day he came out of the men's room crying, sobbing inconsolably. He kept saying over and over, "Now it's gone too!" It took me a while to figure out what the "it" was, but finally I discovered that he could no longer manipulate the zipper on his pants to urinate by himself. He was reluctant to accept help but didn't like the alternative any better. 

     Once again, while there was a loss of function due to Alzheimer's disease, the real loss occurred in Jack's perception of what the function meant to him as a man and as a person. Because we were all matter-of-fact in our approach and respected his privacy as much as we could, he was not embarrassed and was able to maintain his stature at the center.

Losses in the Later Stages

Marge was about 80 years old when she came into our late stage program and was fairly advanced in her illness. She continued to live at home with her daughter, son-in-law, and their nine children. She came to the center three days a week to give the daughter a chance to spend time alone with the younger children.

     Marge could put finger food in her mouth and swallow but needed help with liquids and items requiring a spoon or fork. She was incontinent and didn't like taking help at changing times. She uttered the same words or phrases over and over again. She walked through the center, calling out what seemed to be nonsense to the staff. She would have walked out the door but for the staff keeping a close watch on her. 

     Marge's calling out behavior became increasingly difficult to manage and became disruptive to the rest of the participants at the center. It seemed to increase in the afternoon. I asked the daughter if she had this behavior at home. The daughter acknowledged that she did, but just for a short time in the afternoon right before the school bus arrived with the majority of the family's children. I asked the daughter what happened after the kids got home, and she said they all sat around the TV and ate dry cereal for a snack. The calling out behavior may well have stemmed from the loss of Marge's afternoon routine, the loss of TV companions, and the loss of her crunchy cereal. Most of all, her feelings of being safe and feeling connected to other human beings were missing from her center routine. Since she could no longer participate in many of the activities, she may have felt lost in the afternoons. Needless to say, when Marge began calling out, she was led to the couch, seated snugly between two other participants, and given her crunchy cereal. 

Helping Strategies

Tom Kitwood's book, Dementia Reconsidered: The Person Comes First (1997), provides a framework and a challenge to the caregiver to see the person first and then acknowledge both the losses and the wellness of the person. He states that a person doesn't lose his personhood because he has dementia. He defines personhood as "a standing status that is bestowed upon one human being, by others, in the context of relationships and social being. It implies recognition, respect and trust" (p. 8). 

     A humanistic framework such as Kitwood's assumes that the disease affects brain cells and behavior but does not erode the personhood of an individual. It assumes that a person, regardless of the level of disability, has the right to be treated with dignity, respect, and caring. Finally it assumes that, at some level, all interactions and stimuli in the environment of a person with AD have some effect on that person even when we believe the person is beyond perceiving.

Early Interventions

People in the early stages need support, education, and help to plan for their future. They need to feel that although they stand at the edge of losing control, there are ways they can extend their wants and desires into the future by making decisions about what they want to happen as the disease progresses.

     Support groups give people in the early stages of AD the opportunity to see others who are experiencing similar losses and thereby decrease their sense of isolation. Support group can be a place where people can say how angry it makes them when they can't find their cars in the parking lot and how stupid they feel when they can't open the locks on the doors. They talk about medications they have tried and research projects and news they have heard about AD. Group members provide a sounding board for each other to discuss situations that are going on at home. Because they are in the group, they give and receive support; they have roles and responsibilities within the group. 

     After the first early-stage support group we held, I asked the people attending the group if they thought it was useful. They all agreed that it was. One man responded that being at that group had given him hope-not hope that he would get better but hope that it wasn't going to be as hard as he had thought. 

     People in the early stages need education to clear up the myths about what Alzheimer's disease is like and what is likely to happen to them as the disease progresses. They need to hold onto their hope that they will not become "like their father was" and that they will have opportunities to learn about research and new treatments. They also need to learn what they can do to keep themselves as healthy as they can be and to keep their minds working for as long as possible. For example, physical exercise benefits their well-being not only by helping their physical condition but also by improving their mood. Cognitive exercises may improve cognitive functioning for a while (Quayhagen, Quayhagen, Corbeil, Roth, & Rogers, 1995). People with AD also get a psychological boost from knowing that they can actively do something to fight the effects of the disease. Staying connected to people and involved in life not only stimulates the brain but energizes the person. 

Middle Stages

Keeping in mind that respect and dignity should be maintained regardless of the stage in the illness, caregivers are challenged by the middle stages of AD, when the person's daily living skills are evaporating. The goal here is to encourage the person to do as much of a task as he or she can do and to step in only when necessary. Sometimes the caregiver acts as a coach, other times the caregiver is an assistant, and occasionally the caregiver has to do most of the task for the person. Unnecessary losses occur when the caregiver does what the person can still do-even if the caregiver can do it more rapidly. The person loses not only the ability to do the task but also his or her sense of satisfaction and usefulness.

     Purposeful activity and routine replace the person's loss of initiative and ability to remember the sequence of events. Failure-free activities that also challenge the person promote feelings of industry and mastery. Art and music therapy can help a person tap into creativity and imagination. The sense of art and beauty does not seem to diminish as rapidly as words, memory, or problem solving. Humor also keeps the person connected to others. 

     People in the middle stages of AD may also begin to forget who they are and what has been important to them. Caregivers ought to know the person's background and be able to tell the person his or her own story. Saying something as simple as "Tom, you take your coffee black, right?" or "Yes, your wife, Susie, will be here at 4 o'clock" can help a person stay connected to his own life. When people and their stories are separated, they become patients or victims again; they are recognized only by their accumulation of losses.

Late Stage AD

People in the later stages of AD are increasingly dependent on their caregivers for all their activities of daily living. Their need to feel connected to other human beings and to interact with their environment has not diminished. When all meaningful speech is gone, people may relax or be comforted with singing, listening to music, or being in motion. Nonverbal communication (voice tone, eye contact, body language) becomes very important and can express care, concern, and respect. Smiling and using a soothing tone of voice help a person feel safe. 

     Sometimes the ability to understand lasts longer than a person's ability to speak. Since it is impossible to assess what a person understands, it is best to assume that he or she understands everything. Before beginning to help, tell the person what you are about to do. The words and the tone address the humanity, even if the words are not fully understood.

     Physical touch and sensory stimulation help minimize the feeling of being disconnected from the environment. Exercise (even passive range of motion) diminishes the discomfort of stiff joints. Hand and leg massage can improve circulation and provide the human touch that everyone needs. 

     Even in the very late stages of AD, when people may have to be fed by the caregiver, meal times should be more than simply taking in nutrition. Telling the person what he or she is eating or whether a food is hot or cold can heighten the sensory experience of a meal. 

     Underneath it all, people with Alzheimer's have needs and desires common to every human. They feel scared in new surroundings, they long for something familiar. They want to do things well and be appreciated. They want to express their opinion and be able to make choices and have influence in their arena of companions. They want to understand and feel understood. They want others to know their story; they want to be reminded of their loved ones and the things that were important to them, even when they can no longer remember by themselves. 

     The greatest losses encountered by people with Alzheimer's are not necessarily caused by the disease. Often, they are caused by the failure of others to recognize the person's humanity. Recognizing a person's humanity, using strategies to minimize the losses caused by Alzheimer's disease, and helping the person live life to the fullest should be the goal of all those who care for people with Alzheimer's disease.

Noyes: Chapter Six

Cohen, D., & Eisdorfer, C. (1986). The loss of self: A family resource for the care of Alzheimer's disease and related disorders. New York: Penguin Books USA. 

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Philadelphia: Open University Press.

McGowan, D.F. (1993). Living in the labyrinth: A personal journey through the maze of Alzheimer's. San Francisco: Elderbooks.

Quayhagen, M.P., Quayhagen, M., Corbeil, R., Roth, P., & Rogers, J. (1995). A dyadic remediation program for care recipients with dementia. Nursing Research, 44 (3), 153-159.

Additional Reading

Fazio, F., Seman, D., & Stansell, J. (1999). Rethinking Alzheimer's care. Baltimore: Health Professions Press.

Noyes, L.E., Daley, P., & French, K. (2000). Community-based services help people in the early stages of Alzheimer's disease and other cognitive impairments. American Journal of Alzheimer's Disease, September-October, 309-314. 

Noyes, L.E., & Wexler, M. (2001). Caregiving at a glance: for professionals assisting people with Alzheimer's disease and related illnesses. Falls Church: Alzheimer's Family Day Center Publication.

Snyder, L. (1999). Speaking our minds: Personal reflections from individuals with Alzheimer's. New York: W.H. Freeman & Co.

Volicer, L., & Hurley, A. (1998). Hospice care for patients with advanced progressive dementia. New York: Springer Publishing Co.

This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Editor,  © Hospice Foundation of America, 2002.