Did you ever stride purposefully into a room, stand in one spot, and then wonder what you'd intended to do? Lose your house keys or forget where you parked the car? Relax. Occasional memory slips are natural.
Perhaps, though, memory problems are piling up in ways that affect daily life. Or maybe your concerns go beyond forgetfulness. Do you find yourself struggling to follow a conversation or find the right word, becoming confused in new places, or botching tasks that once came easily? Everyone has these experiences sometimes, but if they frequently happen to you or someone you love, they may be early signs of Alzheimer's disease.
This condition strikes fear into people's hearts, with good reason. It is the leading cause of dementia, a brain disorder that robs people of the ability to think, learn, and remember, and, eventually, of their very selves. About 5.4 million Americans have Alzheimer's disease, and estimates suggest it will affect 7.7 million by 2030. Already, it is the sixth leading cause of death in the United States. There is no cure, and available treatments alleviate symptoms temporarily at best.
Better times may be coming. Many new drugs are under investigation. New research is turning up evidence of very early signs of Alzheimer's, offering possible targets for new treatments that could alter the disease's course before more flagrant symptoms appear. And diagnostic guidelines published in 2011 by the National Institute on Aging and the Alzheimer's Association aim to help researchers move closer to early detection and intervention.
Meanwhile, caring for someone with Alzheimer's continues to be one of the toughest jobs in the world. It is stressful, physically and emotionally draining, and very expensive, as almost 15 million unpaid caregivers for people with Alzheimer's and other dementias can attest.
Because the disease is progressive, coping with it requires foresight and careful advance planning. People in the early stages of Alzheimer's often can be partners in that planning, and this comprehensive report can guide you, as well. In it, you'll find hope for people who are struggling with Alzheimer's and practical help for caregivers.
With forethought, patience, knowledge, and support, you can better meet the challenges posed by this disease and improve the quality of your life and that of your loved ones.
John H. Growdon, M.D.
Anticipating the future
Physicians are sometimes reluctant to discuss in much detail what the future holds for someone with Alzheimer's disease. Their reticence is understandable. It's impossible to predict exactly how the disease will affect an individual because the symptoms and rate of progression vary. Some people develop severe psychiatric problems; others do not. A symptom can show up early or not appear until much later.
For some people, the decline is slow and gradual over a decade or longer; others experience a rapidly downhill course that ends in death within a few years. The symptoms are also influenced by the person's intellectual abilities before the illness sets in, and by other health problems, personality, coping skills, and family support.
The five stages of Alzheimer's
For many years, Alzheimer's disease has been described as unfolding in five stages. Each stage represents snowballing symptoms that become apparent to families and caregivers decades after far less obvious changes in the brain have begun taking place.
Stage 1. Memory problems occur. Initially, they may seem like slight absentmindedness and may go unnoticed by others. Some people with Alzheimer's are quite successful at hiding these symptoms, but this becomes increasingly difficult. They may lose or misplace valuable objects. They may not fully absorb what they read or hear, and their performance on the job or in social situations begins to suffer. They may become confused in new surroundings or lost in an unfamiliar part of town. Word-finding problems or aphasia — the inability to use language — may begin at this stage.
The first personality change is usually a loss of spontaneity. People who have Alzheimer's disease may avoid situations that challenge their abilities and may become withdrawn, apathetic, moody, depressed, irritable, or anxious. They typically deny their problems are serious, even to themselves, and may blame others for their failures. The family may assume that the person is under stress or suffering from an emotional problem. A person examined in this early stage of Alzheimer's disease may receive a diagnosis of mild cognitive impairment.
Stage 2. Memory problems are now more obvious to others. Because it's difficult for people with Alzheimer's to retain new information, they may lose the thread of conversations. They sometimes have difficulty recalling current events, such as who the president is, and even bits of information from their own personal history, such as where they attended school. Their ability to perform mathematical calculations suffers, and they may no longer be able to manage their own finances. Depression often becomes prominent at this stage, further hampering the ability to function.
Impaired reasoning and judgment make traveling more difficult. Although people at this stage may be able to find their way around familiar areas, their ability to handle unexpected events is impaired, making driving risky. In addition, dishonest people can now more easily victimize them. People with Stage 2 Alzheimer's can have a striking lack of insight into their problems. They may refuse any assistance with finances, but forget to pay bills; insist on driving, but have a series of fender-benders; continue to cook, but repeatedly scorch empty pots on the stove.
Stage 3. Memory can fluctuate daily or even hourly. People sometimes forget major events in their lives, and yet continue to deny having memory problems. As they try to fill memory gaps, their conversation may become disjointed and contain irrelevant content. Often they are unaware of the date or the time of year.
The continuing deterioration of memory makes people feel insecure, which they may express with paranoia or anger. They may accuse others of hiding things, stealing, or plotting against them. Their emotions are unstable, and their relations with others may be marred by rapid mood swings that have no apparent cause. Episodes of crying, angry outbursts, and agitation may occur.
At this stage, people with Alzheimer's are no longer able to survive without some assistance. Although able to manage many basic activities of daily living, such as using the toilet and eating, they only partially complete some tasks because they cannot remember all the steps involved. Their grooming and choice of clothes may be the most obvious sign of this difficulty. A simple decision, such as which sweater to wear, can be overwhelming.
The decreased ability to think forces the person to withdraw from social activities that require active participation. Undemanding activities such as attending a concert may still be enjoyable, but going to a dinner party would be bewildering. The inability to handle potentially stressful situations causes anxiety, which can trigger catastrophic reactions such as shouting, cursing, or hitting others.
Stage 4. Dramatic changes occur. The person may begin to look ill. His or her language skills are considerably reduced, and memory impairment becomes so profound that everything can seem unfamiliar and threatening. Some knowledge of the past is usually retained, but it is fragmentary.
People tend to be less withdrawn at this stage, but they often develop behavior problems. They have difficulty comprehending what others say or do, which can lead to a variety of emotional reactions, including delusions (accusing a spouse of infidelity or being an impostor, talking to imaginary people, believing the reflection in a mirror is a stranger), obsessive behavior (repeatedly cleaning an object, endlessly removing and replacing the contents of a drawer), agitation (pacing, hand-wringing, asking the same question repeatedly), and catastrophic reactions. Sleep disturbances are common. The patient may awaken at night with hallucinations; feeling frightened and disoriented, he or she may be unable to go back to sleep. Wandering at night can become a major problem.
Another problem for caregivers is the person's fear of bathing, which becomes common by this stage. Problems with movement and coordination also often emerge. The person may walk with slow, shuffling steps and require assistance with bathing, dressing, and eating. Weight loss can occur from difficulties with chewing and swallowing. Incontinence often develops at this stage because people do not remember where the toilet is, cannot manage their clothes, or do not recognize the body's signals.
Stage 5. This stage has been called "the long goodbye." All language skills have been lost, and there seems to be very little left of the person's "self." Behavior problems diminish, and motor skills decline until the person can no longer walk, sit up, chew and swallow food, or control bladder and bowel movements. Brain activity is disturbed, which may result in seizures. As the brain shuts down, the person becomes unresponsive, lapses into a coma, and finally dies.